1. What steps he is taking to reduce transport emissions.
2. What steps he is taking to reduce transport emissions.
6. What steps he is taking to reduce transport emissions.
We have set out clear plans within Government to reduce emissions across all transport modes. In my own area of responsibility, this includes last year’s “Road to Zero” strategy for road vehicles and, most recently, our future of mobility strategy specifically focused on creating cleaner and greener transport.
Nuclear, solar, tidal, offshore wind, onshore wind: all are forms of renewable energy that have been cut on this Government’s watch. Forty thousand people die prematurely each year as a result of poor air quality, and we all face the threat of climate change. This reckless approach to emissions must stop, so when are the Government going to end their reliance on fossil fuels and make the switch to electric and hydrogen-powered vehicles?
I am grateful for that question, and delighted by Labour’s recently rediscovered interest in emissions. The hon. Gentleman will know that many of the areas that he mentions—I say this as former Energy Minister—have been colossal successes. In the offshore wind industry, for example, the required levels of subsidy have fallen dramatically over time, as have the costs. As I said, we have the “Road to Zero” strategy. We also have the “Aviation 2050” Green Paper and the “Maritime 2050” strategy, all of which are designed to reduce emissions.
Over the past decade, Bristol has seen a 40% rise in bus use, which is obviously really good, but there is a downside in that buses and coaches contribute almost a quarter of NOx emissions in the city. We have been doing what we can to retrofit the bus stock, but we have just put in a bid for £2.5 million from the clean bus technology fund so that we can retrofit another 170 buses. Will the Government support that?
I am grateful to the hon. Lady for that question on an issue of great importance—reducing emissions from buses. We have done quite a lot of that already. I am sure that the Under-Secretary of State for Transport, my hon. Friend the Member for Wealden (Ms Ghani), will look forward to receiving the bid and will carefully examine it with her officials.
In Kensington and Chelsea, nearly 30,000 children are living with unsafe levels of air pollution. That is repeated across the country. Asthma UK and UNICEF UK tell us that babies born into heavily polluted areas are born with smaller lungs and brains, and are more prone to asthma, while those on steroids will have their physical development curtailed by this debilitating illness. Will the Minister please tackle this national health emergency by setting legally binding limits on particulates across the country, in line with World Health Organisation guidance, and give future generations a chance to thrive?
The hon. Lady will know that we are doing an enormous amount through the clean air fund and the other supported funding that we are giving to local authorities, including by working very closely with Transport for London. She is absolutely right to highlight the importance of this issue. However, I was slightly surprised when I carefully perused the shadow Secretary of State’s speech earlier this week, which discussed emissions in some detail, because I was unable to find virtually any mention of cycling, walking or active travel—an absolutely central part of this discussion. I commend that thought to Labour Members.
While I warmly welcome any initiative that helps to curb emissions, I am slightly concerned that the roll-out of low emission zones across the country will lead to problems whereby motorists, hauliers and delivery drivers are having to comply with different regulations in whatever city they come into. Does the Minister agree that we also need to look into alternative solutions so that we do not just continue to tax the motorist but give them the alternative of buying a new car or paying taxes?
That point is very well made: I thank my hon. Friend. We have been talking to the various industry organisations about this issue. There is a concern that there might be a patchwork of permits as between different cities. It is not clear exactly what each city is going to be implementing by way of a zone. We are working very closely to see if we can minimise any disruption and potentially create a national charging infrastructure.
Further to the question from my hon. Friend the Member for Kensington (Emma Dent Coad), 4.5 million children are growing up in areas with unsafe levels of particulate matter. Over 70% of UK towns and cities have levels that are above the limit recommended by the World Health Organisation. When will the Minister protect our children from toxic air? Under his existing plans, they are likely to persistently face that for another 10 years.
I am slightly surprised that the hon. Lady, as Chair of the Transport Committee, is not aware of the very considerable funding—hundreds of millions of pounds—and the very specific and close work we are doing with cities, many of them Labour cities constructively working with Government on reducing this problem. It is a complex and multifaceted issue, and we are taking it very seriously.
This week the chief executive of the Committee on Climate Change said that tackling climate change “requires the strongest leadership in the heart of government.” But with the Government set to miss their emission reduction targets, it is clear that the Transport Secretary has failed to provide the leadership required. I have a straightforward question for the Minister: do he and his boss believe in man-made climate change, and if so, why are they refusing to act?
I can tell the hon. Gentleman that I am very much persuaded that many of the effects of man have been deleterious to the environment in many different ways, including relating to climate. Of course I share his concerns, but I am surprised that the Labour party is not taking this issue more seriously. How can he make a speech that discusses wide-ranging issues and not merely fails to mention issues of diversity or disability but barely focuses on cycling and walking—a critical set of interventions in which we are investing heavily across the country?
The Minister said there was nothing about that in my speech. I will send him a copy. He needs to read it again, because it was there Talk comes cheap, and what matters are actions. The Transport Secretary and his team have totally undermined carbon reduction measures by slashing subsidies for electric vehicles, scrapping rail electrification, gutting local bus services, allowing fares to soar and underfunding cycling. Will the Minister give an unequivocal undertaking to reverse those damaging cuts and embark on a programme of rapid decarbonisation of transport, or alternatively, will this Government instead go down as the one who chose not to act to protect the planet for future generations?
Far from having failed to read the hon. Gentleman’s speech, I have scrutinised it with almost rabbinical closeness. It is a rather interesting mixture of the good, the incoherent and the baffling. I quite liked some of the stuff about land value capture— I thought that was sensible—but it misunderstands the nature of carbon budgets, the entire purpose of which is to allow the whole of Government to make decisions about how carbon budgets, which we are presently meeting, will be addressed. It is also incoherent in wishing to nationalise the rail service, while also somehow removing Whitehall from the process. I look forward to further details and updates for the House.
3. What recent steps he has taken to encourage cycling and walking.
I thank my hon. Friend for his question. I am delighted to announce that we are making available from today £21 million in new funding to support the national cycle network. I have agreed with Sustrans that it will work with High Speed 2 and Highways England to integrate routes wherever possible and to use the money we have provided to leverage further investment from other sources.
I warmly welcome the extra funding from the Minister. Two weeks ago, the Select Committee on Transport took its active travel inquiry up to Manchester, where we met Chris Boardman, the walking and cycling commissioner. He told us that they are unable to introduce certain safety measures in Manchester, such as mini pedestrian crossings, due to being discouraged by the Department for Transport because those are not recognised interventions. How can the Department do more to devolve safety improvements to local authorities, so that we can eradicate some of the less safe areas of our streets?
That is such an important question. We are working closely across all parts of the Department for Transport to think about improving road safety. I have huge respect for the work that Chris Boardman is doing in Manchester. I have met him on several occasions, as well as Brian Deegan, his chief designer, and we have specifically discussed that issue. There is a tension between national standards and local innovation. We are keen to ensure that both are met in the right way. I will certainly take this up again, because it is an important issue, and we want to see more innovation, particularly in support of road safety.
Cycling and walking are good for the environment and they reduce congestion, support the public health agenda and are great fun. Chris Boardman is doing an excellent job in Greater Manchester, and I am about to appoint an active travel commissioner for South Yorkshire. Will the Minister meet my new active travel commissioner and me to discuss how we can work together to encourage more people to cycle and walk?
It is absolutely right to celebrate what is being done in Manchester. It is also important to celebrate what is being done elsewhere in the country. If Sheffield is taking a lead, that is fantastic. Great work is also being done in Birmingham by the Mayor there, who has just appointed his own west midlands cycling champion, which we welcome.
Many millions of pounds have rightly been spent on providing cycle highways and cycle routes, but there is no requirement for cyclists to use them. Should it not become an offence for a cyclist not to use these highways where they are provided?
The answer to that, I think pretty clearly, is no. The roadway is for all users. Cycling infrastructure is used to try to preserve and protect cyclists. If that had the effect of forcing people into cycle lanes, it might have all kinds of road safety consequences that we would like to avoid.
While I am a big fan of cycling, I am a bigger fan of walking, particularly for my disabled constituents, who tell me that they are really fed up with cyclists on pavements. We do need improvements to cycle lanes, to be sure, but what can the Minister tell us about improving safety for pedestrians, particularly disabled pedestrians?
I think the hon. Lady is absolutely right, and I very much salute her support for disabled people. She can have a word with the Secretary of State and, on her side, the shadow Secretary of State on the issue of disabilities. Walking is a very important part of the same issue. We are in the process of working very hard on a pavement parking review—it is coming towards the end of its work—and we are also working on the question of micro-mobility and how we regulate that. Both those issues are going to bear very closely on the question of how we think about enforcement against cyclists and other users of pavements who make life difficult for walkers.
With the disappointing news in the last couple of days that Oxfordshire County Council has had to remove the B4044 cycle path from its housing infrastructure fund bid, first, will the Minister comment on what he is doing to work across Departments, particularly with the Ministry of Housing, Communities and Local Government, to provide cycling as a way of helping with new housing; and, secondly, will he commit to working with me and Oxfordshire County Council to provide the B4044 bid as a stand-alone bid, so that we can get the cycle path we need?
I am happy to look at that. I met Oxford City Council, including its cycling champion and the leader of the council, just recently on these issues. Let me make one other point, which is that the advent of e-bikes—the Department is supporting them, and further news about them has been given this week—will also open up further housing opportunities around the country in a way that can only be good both for housing and for future personal health.
I apologise to the Minister, because as a consequence of his looking at the hon. Gentleman who questioned him, I did not hear him, but I think he floated the concept of an e-bike. Did he say e-bike?
Yes.
Well, I look forward to further illumination in due course. I am not familiar with this nostrum, but I have a feeling that I am soon going to be. I must say that it sounds very exciting.
At the weekend, I had the pleasure of walking the new South Loch Ness trail with a group of friends, one of whom is getting married, and we managed only to get lost once, which was pretty good given that there was a blizzard. That trail was only made possible thanks to funding from the European agriculture fund for rural development, so what steps are the Government taking to make sure that that kind of funding continues to exist for investment in rural infrastructure that promotes health and wellbeing after the United Kingdom leaves the European Union?
I do not know the particularly circumstances of the route the hon. Gentleman is talking about, but I am sure he will join me in welcoming today’s news of the work on the national cycle network, which is precisely designed to target the kinds of cyclists and walkers he is describing Mr Speaker, on the issue of e-bikes—there is a somewhat “Not the Nine O’clock News” quality about this—an e-bike, m’Lud, is an electronically or electrically powered velocipede, either a pedal bike or a moped, which are differently regulated by the Department in each case.
I am genuinely grateful to the Minister. One learns something new every day, and I am now better informed.
We haven’t for months!
Well, the hon. Gentleman says that we have not learned anything new for months, but I have learned something today—that little titbit from the Minister—and I am deeply obliged to the hon. Gentleman.
I am delighted that the Minister is encouraging more walking. May I urge him, as a Herefordshire MP, to spend some of his Easter holiday on the Long Mynd in the Shropshire hills, an area of outstanding natural beauty, so that he can promote walking to citizens while enjoying our beautiful Shropshire countryside?
I am very grateful to my hon. Friend. I have actually walked Long Mynd on several occasions, and I have also paraglided from the top of Long Mynd. I very much encourage him to contemplate that as a perfectly splendid additional mode of transport enabled by walking.
Based on what the Minister had to say about walking, cycling, e-bikes and all the rest, when will the Government get rid of their ministerial cars and have e-bikes instead?
I welcome that question. The hon. Gentleman will be aware that I am a keen cyclist to and from work. Sometimes cars are required for security and other reasons, but I barely use a ministerial vehicle, and I encourage all colleagues to enjoy the benefits of cycling and walking.
Walking is the most basic form of transport, and a 10-minute walk offers huge benefits to our health and our communities by easing congestion and air pollution. Areas where footpaths and pavements have been improved have seen increases in trade at local shops and a stronger sense of community, but nevertheless, millions of journeys of under a mile are still made by car. When will the Government properly fund their cycling and walking strategy, because the money that the Minister has announced today simply will not cut it?
In 2010 the funding levels that we inherited from the previous Government stood at about £2.50 per person, and they are now about £7.55 per person. We would like to get that spending a lot higher if we can, as we fully agree about the merits and benefits of cycling and walking. However, funding is now three times the amount that we inherited from the Government who had governed for 13 years.
4. What recent assessment he has made of trends in the number of journeys taken by bus.
Local bus journeys remain central to transport choices, accounting for around 59% of all public transport journeys. Numbers of local bus passenger journeys in England have been falling since the 1950s, and they fell by 1.9% in the year ending March 2018.
Bus services provide essential independence and freedom to people with disabilities, yet disabled bus passes allow free travel only after 9.30 am, despite the fact that most people start work before then. Will the Government commit to providing the funding necessary to lift those time restrictions on disabled bus passes?
The hon. Lady raises an important point. Bus passengers and disabled passengers have a close link, and it is right that someone’s ability to jump on a bus is about not just economics but social inclusion. That is why we launched the inclusive transport strategy last year. The concessionary bus budget is around £1 billion, which supports about 10 million passengers. That funding is concessionary and down to local authorities, which have very different packages up and down the country.
My hon. Friend the Member for Bradford South (Judith Cummins) made an excellent point, and on this Government’s watch the number of bus journeys is in freefall. Bus funding has been cut by £645 million a year, yet for many people bus services are a lifeline. When will the Government finally reverse those deeply damaging cuts?
The hon. Gentleman is right to say that bus services are a lifeline because, as I said earlier, not only do they get people to school and work, but they also tackle issues linked to loneliness. He is wrong about funding, however, because around £250 million is paid into bus services, and about £43 million of that goes directly to local authorities. We must understand what is happening up and down the country. In Reading, for example, just like in Bristol, Brighton and Liverpool, bus passenger numbers are up. That is why it is important to understand the powers in the Bus Service Act 2017, which enable local authorities to work with local bus companies and ensure a focus on the services that local passengers want.
5. What recent assessment he has made of trends in the number of passengers flying from British airports.
In 2018, 292 million passengers flew to or from a UK airport. That figure was almost 3% higher than in 2017, and 24% higher than in 2008. The feedback that I have received from airports this year suggests that they expect that growth to continue. The one thing that could bring that growth to a grinding halt is Labour’s plan, which was announced yesterday, to hike the cost of going on holiday.
On 8 February easyJet ended its service between Aberdeen and Gatwick, which was the latest in a succession of cuts to flights between Aberdeen and London. British Airways has reduced services between Aberdeen and Heathrow in recent months, and that is making life more difficult for businesses and individuals across north-east Scotland, including in my constituency. Will my right hon. Friend meet me to discuss the impact that those service reductions are having on the north-east economy, and say what can be done to help alleviate the situation?
I will be very happy to meet my hon. Friend. He knows my concern about the need to guarantee enough capacity for regional connections. It is one of the reasons we have said there will be a bloc of new capacity at Heathrow airport, when it expands, set aside for regional connections. That is fundamentally important to the future of aviation in the United Kingdom.
The Secretary of State highlights the projected increase in passengers, particularly at Heathrow. In recognising that and planning ahead, does he agree that a new southern rail access to Heathrow serving Surrey and southern markets and going, hopefully, via Feltham in my constituency, will be a positive contribution, increasing the speed at which passengers reach Heathrow and reducing congestion?
I absolutely agree: we need both western and southern access to Heathrow. That is an important part of ensuring that the airport can expand in a sustainable way, but it will also make a real difference to the hon. Lady’s constituents who work at the airport.
Air passenger duty not only puts UK airports at a competitive disadvantage, but is a particular challenge to domestic carriers, where passengers end up paying the duty twice. Will the Secretary of State join the “A Fair Tax on Flying” campaign and encourage the Treasury to cut air passenger duty on domestic flights once we leave the EU?
I know how strongly people in regional airports feel about this issue and the intense pressure from around the United Kingdom on the Treasury to look at this again. I know my right hon. Friend the Chancellor of the Exchequer has taken careful note of all those representations. Of course, the one thing that would not help Newquay airport and others is Labour’s plan to hike air passenger duty.
Which? reckons that, if we have a no-deal Brexit, British passengers may well face more than five hours’ wait in airports in this country and on returning to the UK. It recommends that people should take with them not only water and food, but nappies. Does the Secretary of State recognise that there is a real danger in a no-deal Brexit for British passengers? Has he considered yet using the Civil Contingencies Act 2004 to make sure that passengers are protected?
We of course continue to look very carefully at all the potential implications of different Brexit scenarios. What I would say to the hon. Gentleman is that passengers from this country go on holiday around the world, not just in the European Union, and they do not end up waiting for five hours at airports. The reality is that those countries and those airports want British tourists and they will work to make sure that that is possible.
To encourage passenger numbers flying out of Scottish airports, why will the Secretary of State not guarantee public service obligations for additional slots for the new runway at Heathrow?
I have been very clear that the Government will, using the tools at our disposal, ensure there is guaranteed capacity for regional airports at Heathrow. That is absolutely clear Government policy.
The passenger numbers at Belfast City airport and Belfast International airport have been exceptionally good, but connectivity is key. Will the Secretary of State outline what connectivity can be brought to benefit Belfast City airport, Belfast International airport and Londonderry City airport?
I have had regular meetings with both airports since becoming Secretary of State. They have great ambitions to expand their route networks. The commitment I give to the hon. Gentleman is that my ministerial team and I will do everything we can to support their ambitions to attract more international routes and better connections within the United Kingdom.
The rise in passenger numbers has obviously led the Government to become complacent. Long-haul connections from UK airports have not kept up with our European competitors and many airlines are feeling the pinch. Is it not time for the Government to commit to road and rail investment to strategically important airports, so that they can compete effectively?
The hon. Gentleman clearly has not been following too closely what has happened. We have, for example, just opened a new road alongside Manchester airport. We are in the development phase of western rail access to Heathrow. We are taking HS2 to Old Oak Common, creating new opportunities for accessing Heathrow airport, and there are more things happening around the country. I absolutely share his view that we need to improve connections to airports. [Interruption.] He says, “Heathrow”. We have just funded new trains for Newcastle-upon-Tyne Metro, which of course connects to the airport. The Government are investing in connections to our airports.
7. What recent assessment he has made of the potential effect of the UK leaving the EU on the viability of the aviation sector.
Flights between the United Kingdom and the European Union will continue whatever the outcome of EU exit. The Government will continue to work closely with the UK aviation sector as we negotiate our future relationship with the EU, including to maintain the leading position of the sector.
In the event of a no-deal Brexit, flights between the EU and the UK would be capped at 2018 levels, which could result in the cancellation of up to 5 million flight tickets. What assessment has the Secretary of State made of the financial impact on the air travel industry, and of consumers’ ability to emulate the Prime Minister in her ability to walk on water?
I am afraid that the hon. Gentleman is wrong, because a new regulation is now in place that guarantees aviation between the UK and the EU in all circumstances, and it does not include any kind of cap.
14. What bilateral arrangements will be in place if we leave next Friday with no deal?
We had done a lot of work on ensuring that we had good plans for bilateral arrangements, were they to become necessary, but I can tell the House that in the past few days the European Council has confirmed and ratified a regulation to ensure that across the whole European Union flights will continue as normal this summer. That means people can go ahead and book their holidays with impunity and enjoy a good time in their normal destinations.
Wherever people fly in Europe, they have always been protected by good relationships and good air safety, but the Secretary of State must be aware of the scandalous situation in which people are frightened to fly on a certain type of Boeing aircraft. There are leaks indicating that there are real problems that Boeing has not faced up to. It has not grounded the 737 fleet. Planes are crashing and people are dying, and Boeing should be brought to book. Is he going to do something about it?
As the hon. Gentleman knows, this country was one of the first to ground the 737 Max aircraft, which was absolutely the right thing to do. There are clearly some alarming circumstances surrounding the two accidents that have taken place. It is something that Boeing clearly has to deal with. Unless and until the problem is solved, I cannot see countries such as ours allowing those planes to fly again.
Regardless of when we leave the European Union, we must continue to apply the highest environmental standards around our airports. What will the Secretary of State do to continue to reduce the noise footprint around airports, particularly those in very built-up areas, such as London City airport?
We have now appointed the head of the new aircraft noise body, which will monitor noise levels at airports and inform the Civil Aviation Authority when it needs to step in and use its enforcement powers. Of course, with the transition to a new generation of lower noise, lower emission and lower fuel consuming jets, the noise footprint around our airports is now considerably lower than it was a few years ago.
8. What steps his Department is taking to support UK transport-related industry after the UK leaves the EU.
My Department is working closely with the transport industry to ensure that businesses and passengers are prepared for EU exit. We engage frequently with stakeholders to understand their needs, and we have taken action to ensure that we are prepared for all possible outcomes. We have agreed contingency regulations with the EU to ensure that flights continue and that hauliers have access to the EU marketplace in a no-deal scenario. We have also set up new UK safety certification regimes so that we have proper safety standards and rules in place in all eventualities.
Unfortunately, the Secretary of State did not refer to the manufacturing industry in that answer. As Brexit looms, his civil servants will no longer have their lame excuse that they are unable to prefer trains built locally—an interpretation of European regulations that is not shared by any other major country in Europe. Even when a firm built a factory in the north-east, it disgracefully lost a contract to a firm that will build the great majority of those trains abroad. Will this Brexit-supporting Secretary of State finally show some backbone and instruct his civil servants to buy trains made in British factories by British workers?
Of course, the contract to which the right hon. Gentleman refers, which was won by Siemens rather than the other bidders, including Hitachi in the north-east, was in fact let by the current Labour Mayor of London.
When it comes to support for planning, it should be noted that, earlier this month, the chief executive of the Road Haulage Association said: “It’s obvious that government has lost its way…tens of thousands of UK hauliers… are still in the dark. Because of government ineptitude they are simply not ready.” In a similar vein, can the Secretary of State confirm that the no-deal ferry contracts do not allow for a delayed start date? If so, what will be the cost to the taxpayer and his Department of this latest blunder?
If the hon. Gentleman had been listening a moment ago, he would have heard me say that we have now completed interim arrangements. The European Union has introduced interim regulations to ensure that hauliers will continue to have access to the European market, which is the right thing to do. We do not want businesses to be disrupted, and those firms will be able to continue to travel to and from the continent in the coming months, doing the work that they do now.
If the Secretary of State listened to the question, it would be much more helpful than listening to the answer A spokesman for the road freight industry has stated: “Our pleas for clarity have been constant—yet none has been forthcoming.” He also said: “We have never shared Mr Grayling's optimism” Given the £33 million settlement payment to Eurotunnel, a reported £28 million compensation payment to the ferry companies in respect of the no-deal contracts, a shortage of some 60,000 HGV drivers that will be exacerbated by Brexit, and the loss of transport industry confidence, surely the best boost for the industry would be the Secretary of State’s stepping aside.
In the light of the conversations that took place yesterday and the statement from the President of the European Council, I am quite glad that we will have provision in a week’s time—if it is necessary, and I hope that it will not be—to ensure that essential supplies and medicines can come into the country. Of course, if the hon. Gentleman does not want a no deal, his party could climb off its high horse and support the Prime Minister’s deal.
9. What assessment he has made of the potential merits of extending the Tyne and Wear Metro to Washington.
The Department’s call for evidence, issued on 7 February, seeks views on how we can seize the opportunities to build on the success of light rail. I am grateful for the response that the hon. Lady sent to the Department highlighting the potential merits of extending the Metro system to Washington, and we will ensure that her comments are taken into full consideration.
Residents of Washington often feel like the town is an island compared with neighbouring cities and towns. It contains 70,000 of my constituents, 70% of whom use their car to get to work. Does the Minister not agree that investment in transport infrastructure—such as the extension of the best light rail system in the north-east to Washington—would be the perfect way to encourage people out of their cars, reduce congestion, improve air quality and reduce the nation’s carbon footprint? What’s not to love?
As ever, the hon. Lady has made a strong case for the original Washington. We are keen supporters of this local transport system. We are investing £317 million in the Metro renewals and refurbishment programme and a further £337 million in renewing the fleet, as the Secretary of State said a moment ago I am aware that Nexus has identified a number of opportunities to expand the Metro network. It is up to Nexus to build a business case and to seek funding accordingly, but I support the hon. Lady’s basic argument, which is that transport investment is a driver of economic growth and environmental improvement. That is why we are investing so much in our networks across the country.
10. What plans he has to increase funding for the Welsh railway network.
Network Rail’s proposed investment in the rail network in Wales during control period 6—between now and 2024—is £1.34 billion. That builds on the £900 million invested throughout control period 5 since 2014. That constitutes an increase of just under 50%. That investment will build a bigger, better railway for Wales.
Wales contains 11% of the UK railway network, but since 2010 it has received only 2% of the overall funding. Last year it received £177 million, while north-west London alone received £669 million. That is not acceptable. When will the Minister start investing in the Welsh railway network and end this chronic underfunding?
I am keen to see investment in the rail network throughout the United Kingdom. The budget for control period 6 is a record £48 billion, and, as I said a moment ago, the Wales budget for the next five years is £1.34 billion. That is just to tackle the infrastructure; we are also investing in tackling the new franchise—which is run by the Welsh Government—and in rolling stock.
rose—
Order. Although the hon. Gentleman represents Cleethorpes, which if memory serves me correctly is in north-east Lincolnshire, he is also a noted parliamentary celebrity in that he chairs the all-party group on rail and therefore we are interested in his thoughts on this matter.
Thank you for the introduction, Mr Speaker If my residents in Cleethorpes wanted to access the Welsh rail network, the first part of their journey would be to catch the TransPennine Express from Cleethorpes to Manchester and, if they did so, as they were leaving Cleethorpes station they would pass over Suggitts Lane level crossing, which as the Minister knows from his recent visit to my constituency is under threat of closure by Network Rail. Could he use his best endeavours to influence Network Rail to look at all other safety measures rather than closure?
That is truly a trainspotter’s contribution.
I can see, Mr Speaker, why you referred to my hon. Friend as a parliamentary celebrity; that was properly ingenious. I will of course do all I can to help with the Suggitts Lane level crossing issue, and I much enjoyed my recent visit to his constituency and thank him for arranging the roundtable with local businesses.
Whether it is the line down to Wrexham or indeed the north Wales coast line, railways in Chester are hampered by the blockage that is the Hoole bridge in my constituency, which the Secretary of State knows about because he visited it during the 2017 general election. During the next control period, will Ministers make money available to improve and rebuild Hoole bridge?
I am not quite as familiar with the geography of the hon. Gentleman’s constituency as he is, so I will have to do some investigation work and then report back to him.
The welcome investment in the Halton curve has meant that train services from Liverpool to Wrexham will very shortly recommence for the first time on a direct service, but will the Minister investigate with the Welsh Assembly Government and the local authorities the possibility of extending that service up the north Wales coast to Flint and other stations in north Wales for tourism and business purposes?
I will certainly investigate the question raised by the right hon. Gentleman. The £16 million investment in the Halton curve has enabled that new hourly direct service between Lime Street and Chester, therefore making it easier for constituents he serves and others across north Wales to travel, so I will see what we can do to make that easier.
11. What steps his Department is taking to improve road connectivity in the Midlands.
As my hon. Friend will know, Highways England is spending a lot of time and effort thinking about improving the strategic network around the midlands through its investment strategy; smart motorways and junction improvements on the M5 are part of that. I am sure he will also join me in celebrating the recent announcement of our large local major schemes, including the A4440 at Worcester-Carrington bridge.
What plans does the Department have to improve the A46, a vital artery that is key to unlocking economic growth, jobs and housing right across the midlands, and how is the Department working with Midlands Connect in achieving those goals?
My hon. Friend will be aware that we are already investing in the A46 link road phase 1 at Stoneleigh junction and in junction improvements around Coventry. We have also funded Midlands Connect to carry out a full corridor study designed to look at potential improvements, and that is an important piece of work. We expect to receive its corridor investment strategy later this year and will be taking it very seriously.
Will the Minister join me in urging Midlands Connect to have a balance of schemes in the east midlands and not just the west midlands? Perhaps he will commend to Midlands Connect the M1-A38 link road and Codnor bypass as it will be a perfect scheme to prove its commitment to the east midlands.
I thank my hon. Friend for registering that point in the most public way possible. I am not aware of any particular bias in Midlands Connect; I do not think it has one. We work closely with it on any of the schemes that it brings forward.
12. What steps he is taking to reduce rail fares.
The Government have frozen regulated rail fares in line with inflation for the sixth year in a row. In addition we announced the launch of a new 16 to 17-year-old railcard, with up to 1.2 million young people eligible for a 50% discount on rail travel to coincide with the new academic year. Fares revenue is crucial to funding day-to-day railway operations and the massive upgrade programme we are delivering, all of which benefit passengers.
The Office of Rail and Road says that the train operating companies have paid out £1.3 billion in dividends since 2014. Would it not be better to use this money to cut fares, rather than paying fat cats in the private sector?
I should point out that 98p in every £1 paid in fares goes back into investment in the industry. The argument about nationalising the railways is one that we have had here before, and I think it is the wrong approach. The approach that we have taken for the past 25 years has led to a record growth in passenger numbers, a record number of services on our network and a record level of safety across our network. The hon. Gentleman’s suggestion would simply move us back to the 1970s and to a model that failed.
13. What plans he has to improve the resilience of the rail network in (a) Devon, (b) Cornwall and (c) Somerset.
I was very pleased to be in Dawlish last month to kick off the next stage of our programme to make the railway line there resilient against storms and floods. The £80 million investment in the new sea wall south of the station should mean that the line does not get blocked by high tides as it is done in the past, and I look forward to that work being completed later this year. Further work at Dawlish will follow, and we have also completed work around Exeter to provide greater resilience in that area. It is a real priority for this Government to ensure that the rail network in the south-west does not get disconnected by storms and bad weather in the future.
I thank my right hon. Friend for giving me such a positive answer. The news of the £80 million funding for the new sea wall was very welcome for the whole region. As he knows, when the Dawlish line is cut off, the whole of Devon and Cornwall is cut off from the network. Can he confirm that, if the local council gives planning permission for the work, it will be started very quickly, to deliver this much-needed scheme?
I very much hope that the work will commence within a matter of weeks. We will then need to go on and deal with the cliffs, which are a significant issue and will require longer development and consent processes because of the extremely sensitive environment around them. It is my view that we need to sort out the cliffs as well as the sea wall.
15. What powers he has to sanction train operating companies for poor performance.
The Department monitors operator performance closely through the franchise agreement. If performance falls below a predetermined level, we can require the operator to incur expenditure to improve performance for passengers. If an operator delivers consistently poor performance, the Department can intervene to act in passengers’ best interests, and this can include removing the franchise and acting as the operator of last resort.
The Minister will be aware, as will anyone here who is a Southern commuter, that for the past three years Southern has been let off the hook again and again. He will also know that, from next month, train operators will switch to “on time” as a target. Southern is currently hitting that target only 72% of the time. At what point will he call for the company to be sacked?
The right hon. Gentleman is not correct to say that action is not being taken. We have held Govia Thameslink Railway, which is part of the bigger franchise, to account for its role in the disruption last year. I recognise that the quality of service that he expects for his constituents has not been delivered over the past few years, but GTR will not make a profit in this financial year and we have capped the profit that it can make for the remaining years of its franchise. GTR is also paying £15 million into a fund for tangible improvements, in addition to the £15 million that it contributed towards the special compensation scheme.
Further to the question from the right hon. Member for Carshalton and Wallington (Tom Brake), not only should GTR not be making a profit; it should be making a whopping loss for the appalling pig’s ear it has made of our service. After all those sanctions and penalties, how on earth can the Minister justify GTR still having that franchise?
I recognise the frustration that people have experienced in parts of our network, but just bringing the franchise to an end could cause further and unnecessary disruption for passengers and therefore be an inappropriate course of action. The question should be how we can improve our network, and that is the action that we are taking. We are seeing this coming through in performance improvements.
Poor performance is not just down to the operating companies. Peak-time trains between Sheffield and London are running slower than they were a year ago because of the botched timetable changes that the Department brought in. When is the Minister going to reverse those changes so that the journey times for peak-time trains between Sheffield and London can get back to being less than two hours, as they were a year ago?
The hon. Gentleman makes a point about Sheffield, so I will highlight the amount of work happening on the midland main line to improve journey times and passenger experiences up and down the network, including Sheffield.
People in East Dunbartonshire experience an appalling rail service, particularly on the Milngavie line, where only 28% of trains arrive on time. Does the Minister know of any other train line on which performance is quite so poor, or could the Milngavie line be the worst in Britain?
The operation of the rail network north of the border is a matter for the Scottish Government, so I am not as sighted on the matter that the hon. Lady raises. If I start to become very excited about the issue, I may be treading into devolved territory, which may be inappropriate. However, I am aware of lines up and down the country on which performance has not been good enough, which is why we are investing at a record level to improve that performance.
Surplus excitement is undesirable. The Minister has an exciting enough life as it is, gadding about the country on a variety of different train services, and we are indebted to him.
16. What discussions he has had with stakeholders in the aviation industry on remotely managed air traffic control.
Trains to planes, Mr Speaker. The Aviation Minister has held discussions on remote air traffic control tower operations with several organisations, including the Civil Aviation Authority, NATS, operators of airports such as Cranfield, Highlands and Islands Airports, and the Western Isles Council.
Highlands and Islands Airports and the Scottish Transport Minister seem determined to drive the centralisation of air traffic control across the highlands and islands, despite the legitimate safety concerns expressed by its staff and socioeconomic concerns expressed by communities across the region. If they are not going to listen to us, will the Secretary of State ensure that the CAA certainly does when it comes to the sign-off of any scheme?
I know well the team that runs the CAA, and I can give the right hon. Gentleman an undertaking that they would not sign off anything that they believed was unsafe.
T1. If he will make a statement on his departmental responsibilities.
I am pleased to announce today that I have approved more than £54 million of funding for the north-west relief road in Shrewsbury. It is an important route that will take cars away from the town centre, reducing congestion, cutting journey times and improving air quality within Shrewsbury, and it forms part of a £1.8 billion programme in the midlands alone to improve motorways and major roads.
May I take the Secretary of State back a year to when he came with me to Alfreton station in my constituency and saw the need for level access to the south-bound platform? Now that the new funding period is starting, can I get an update on when money will be released to deliver that improvement?
I am aware of that issue, which my hon. Friend and I saw together, and I will ask the Rail Minister to give him an early update.
There are just eight days until the UK leave the EU. No deal or plan is in place; there is simply chaos across the Government. However, it is the chaos across our borders that is my concern today. Will the Secretary of State ensure that the Prime Minister, in making her case to the European Council to avoid a no-deal Brexit and about how essential it is to extend article 50, highlights that a border between the EU and the UK will harm trade and the flow of goods, food and medicines and be catastrophic for the logistics sector?
As the hon. Lady and the House will know, we do not want problematic arrangements at the border. Indeed, the deal that the Prime Minister has reached with the European Union would prevent such problems. The hon. Lady is right to say that there are only eight days left, so why does the Labour party continue to put party advantage ahead of national interest? Labour should support the deal next week, so that we can move forward with a constructive partnership with the EU.
T2. An issue even more taxing than Brexit and the uselessness of Southern rail in Sussex is the continued congestion on the A27, and we are still to get a decision on whether the New Monks Farm development, which will include an IKEA that will attract 2 million passenger journeys a year on to that road, will go ahead. I met the Secretary of State a couple of months ago to ask for an update on further proposals to address the congestion, so when can I have it?
As my hon. Friend will be entirely aware—he is a tireless campaigner on this issue, on which we have met—Highways England is reviewing plans for the A27 in light of feedback from the public consultation. We will hopefully have a chance to review and discuss it with Highways England and, in due course, with my hon. Friend. I look forward to it, but I cannot tell him exactly when it will be.
T3. The Secretary of State was unable to answer a written parliamentary question on the legal costs of Eurotunnel’s court proceedings and the settlement deal. Has he now done his sums, and can he give us the cost to the taxpayer of this whole debacle?
As I indicated in a previous statement to the House, this is being looked at carefully by the National Audit Office, which will publish all the information in due course.
T4. Thatcham Research is launching a consumer vehicle security rating that ranks the vulnerability of new vehicles to keyless car theft. Does the Minister agree that drivers are entitled to know how secure their cars are? What steps can the Government take to ensure that happens?
I recognise my hon. Friend’s expertise and understanding, and I thank him for the question. Of course drivers deserve to know how secure their cars are. The taskforce brings industry, police and the Government together to see what more can be done, which includes reviewing public advice on how owners can secure their vehicles, as well as addressing new and emerging threats. We look closely at what it is doing, and we will continue to do so.
T5. With a shortage of 60,000 HGV drivers in an industry that relies on 60,000 eastern European drivers, and with a predicted 150,000 shortfall by the end of 2020, why will the Department not urgently fund driver training and qualifications?
The haulage industry is, of course, a commercial business, and we expect it to provide training for new employees. The Government have put in place a wide variety of support for training through the apprenticeship levy and through other work by the Department for Education and the skills sector. It is for commercial businesses to deliver the training their staff require, and the Government will always provide whatever support we can to help them do so.
T7. In the past 12 months, 845 road incidents involving horses have been reported to the British Horse Society alone. There will have been many more, but those incidents resulted in 87 horses and four people being killed, as well as many injuries. What steps can the Minister take to improve horse and rider safety on the roads? Will he discuss this with Ministers in the Department for Environment, Food and Rural Affairs to see whether more bridleways can be provided to help alleviate the problem?
This is obviously a very serious matter. I thought my hon. Friend would raise the announcement of the preferred route for the Air Balloon roundabout, but this is even more important. He will be aware that the cycling and walking investment strategy safety review includes consideration of horse riders. As it happens, the Department’s Think! campaign has only just launched a new “learn the ways of the road” campaign, which includes looking out for vulnerable road users, particularly horse riders. The point is well made, and I will talk to DEFRA colleagues about this issue because, as he says, getting horse riders off the road is the best way to keep them safe.
Some of the people of Knowsley are having real problems getting to work. On the one hand, they regularly face cancellations on Northern Rail and, on the other hand, if they have to use the Mersey Gateway to get to work in the morning, they have to pay £900 a year. The Secretary of State has done absolutely nothing to address any of these problems. Is it not about time he moved out of the way and let someone else get on with it?
As the right hon. Gentleman knows, we have been working hard with Transport for the North to improve the performance of Northern Rail. As he will also know, the Mersey Gateway bridge and its infrastructure were done in collaboration with Halton Borough Council to enable a substantial additional facility to be put in place for the north-west.
T8. On Saturday, some 15,000 people had a great day at the midlands grand national in Uttoxeter, bringing much-needed revenue and jobs into my constituency. However, had it taken place on Sunday, racegoers would not have been able to get to Uttoxeter until 2.53 pm. I am delighted that the Minister has listened to my long-running campaign and agreed to bring forward signalling on Sundays in 2021, but that is not soon enough. Will he agree to meet me, and perhaps bring along his cheque book, so we can sort this out for my constituents?
I thank my hon. Friend for that question. Through the next east midlands franchise, passenger services on the Derby to Crewe corridor will benefit from increased capacity, which means that trains will operate with at least one extra carriage to help satisfy local demand. This will be supplemented by additional early and late services, and improved Sunday services. The bids for the next east midlands franchise are currently being considered. Ministers just do not see those bids during that stage of the process, but as soon as there is news, I will share it with him. Of course, we will be delighted to meet him, as I always am. I cannot promise to bring my cheque book just at the moment, but I look forward to discussing the issue further with him.
Dockless bike hire schemes could have been transformative, but too many of those schemes have crashed and burned, leaving a trail of destruction behind them. Despite repeated calls from across this House, the Government have not regulated. Will they soon act?
I thank the hon. Gentleman for that question. Of course dockless bikes are a source of interesting innovation, and it has been important to see how that innovation is playing out. They can be regulated under a variety of local government powers. As we see further developments, we will continue to look at this. They will also potentially be subject to the discussion in respect of the micro-mobility review we are doing at the moment, through the future mobility strategy.
Will the Minister update us on progress on Access for All funding bids, specifically the one I made for Upminster station in my constituency, which would help disabled people at this busy hub to connect to Crossrail in Romford and which has the full backing of the Havering Association for People with Disabilities?
My hon. Friend has made multiple representations on behalf of her constituency. The Access for All funding is about £300 million, and the decision will be made public in due course, around April.
In response to the question from the hon. Member for Banff and Buchan (David Duguid), the Secretary of State committed the Government, on Heathrow expansion, to support regional links. Will he confirm where he expects that support to come from—the Government, local authorities or, in Scotland’s case, the Scottish Government?
There are two points to make. We have various tools at our disposal, including the public service obligation system, to protect routes and sometimes to support them. However, as Heathrow expands and as demand for air travel grows, I do not expect most of those routes to need Government support. This is a question of making sure that the capacity is available for routes that will be commercial.
Headcorn station, in my constituency, is used by more than 600,000 passengers each year, yet it has no step-free access, making thousands of journeys more difficult for disabled passengers. Will the Minister update me on whether Headcorn will receive funding from the Access for All programme?
My hon. Friend raises an important point; a lot of our rail infrastructure is incredibly old, even though 75% of journeys are step-free. The decisions on the £300 million that has been allocated for step-free access are taking place at the moment. I am afraid that I cannot tell her about this right now, but the decisions will be made public in April.
We know that the settlement for the next rail investment period has been underfunded, and my constituents want to see a train station at Parkhead. So when looking at future rail investment, will the Minister agree to look at the case for Parkhead and fund it properly going forward?
This is nonsense; the investment going into our rail network in the next few years is at a record level, and the money coming to Scotland, thanks to the generosity of this Government, goes beyond what the Scottish Government would be entitled to under the Barnett formula. I suggest they use that money wisely, to provide the kind of additional facility the hon. Gentleman is asking for.
Network Rail has demolished the Leyland bridge, with no short-term plan to put a temporary structure in place so that we have not got the inconvenience and great disruption being caused to local residents and businesses. Will the Minister intervene to make sure that Network Rail urgently reviews this and finds a temporary solution to this pressing problem?
I am aware of the issue; my hon. Friend has raised it with me. I simply say to him that I have asked for this matter to be looked at carefully. I do not want improvement works to be done at the disadvantage of his constituents.
Which is the greatest danger to the Secretary of State’s Department—no deal, or no Brexit?
As far as my Department is concerned, we will prepare for all eventualities, and are doing so.
Recent vegetation management alongside the railway has destroyed huge swathes of the Erewash landscape. Will the Minister outline what further steps have been taken to ensure that Network Rail does vegetation management responsibly and does not take the drastic measures it has taken throughout my constituency? It is really affecting the wildlife, as well as my constituents’ wellbeing.
We have been reviewing Network Rail’s environmental performance, and the consequences of the recently published new environmental strategy should follow through all areas of Network Rail’s work. We obviously need to maintain a safe rail network, but we also want to see the embankments and all the Network Rail land deliver environmental benefits. The two are not incompatible. I do not know about the specific area around my hon. Friend’s constituency, but I am happy to look at it. As regards the overall picture, we have seen some real change and progress in this policy area, and it will be a priority for the future.
Electrification is clearly the optimal solution for intensively used rail lines, and the Railway Industry Association has shown that it can be delivered at costs that are 33% to 50% lower than those for past projects, if it is part of a rolling programme. Why will the Secretary of State not electrify the midland main line and give Nottingham the cleaner, greener and cheaper services it deserves?
I am sure the hon. Lady will welcome the fact that under my stewardship, in the past three months the Department for Transport and our transport system has opened three times more electrified railway than the Labour party did in 13 years in office, so I am not going to take any lessons from the Labour party. We continue a programme of modernisation of our rail network, which includes electrification and extra capacity and gets cars off the roads and people on to the railways.
Will my right hon. Friend the Secretary of State update the House on when he expects Crossrail to start running? What investigation has been carried out into the scandal of its finances and budget and the overspending that has taken place?
The new management team at Crossrail is working through the project and will be advising everybody next month, I think, as to when there will be a target opening date. I do not think that information will come soon enough—I know that Londoners, including those represented by my hon. Friend, are hungry for it—but the scheme will be fantastic for London and the rest of the country when it opens. On the financial performance, the budget is managed by Transport for London, and the London Assembly has done some investigation work. In terms of the Department’s role, TfL and the Mayor came to the Department seeking a loan to help with the delivery of the project, and we were happy to help them. A further £2.1 billion has been made available, and that should be enough to see the project through to completion.
My train home on Monday night was cancelled and the train that I was trying to get in on yesterday was advertised as 20 minutes late when I gave up on it. That is just two of the seven trains I have caught so far this week, and it is a regular experience for my constituents. I raise the issue in the Chamber regularly. Will someone just come to the Dispatch Box and tell me, “We hear your pain” and that Ministers are going to do something about the Southeastern rail franchise?
I am acutely aware of the service levels of all our rail franchises throughout the country. I am also aware that 2018 was a difficult year and that some of the problems have continued. At the same time, it is fair to point out that we are seeing a service that is delivering more passengers and more services, at record levels of safety. In respect of the individual services that the hon. Gentleman tried to use, if he drops me a line I will look into them, take the matter up with the rail franchise and find out why the services were cancelled.
We must make the most of all the transport links that we already have. The Cotswold line is in urgent need of further upgrades, including further redoubling, to help with reliability and capacity. Will the Minister meet me so that I can make the case to him?
Yes.
Well done, Minister—very brief!
May I press the Rail Minister again in relation to the Pencoed level crossing in my constituency? I have been asking for almost three years now for Transport Ministers to engage in getting the level crossing closed. The Labour-led local authority and the Welsh Labour Government have put forward funding for a transport plan. Wales Office officials are attending these meetings to close the level crossing. Will the Minister commit to sending officials to the next meeting to work towards closing one of the most dangerous crossings in Wales?
I will certainly make sure that officials are fully engaged on this issue.
On a point of order, Mr Speaker. It was said by the Minister, the hon. Member for Hereford and South Herefordshire (Jesse Norman), that I had made no mention of cycling in my speech to the Institute for Government yesterday. I made five mentions of it, and there were 300 words devoted to the subject. The Secretary of State then added that yesterday Labour announced hiking the cost of going on holiday. Mr Speaker, I do not want to stray into using unparliamentary language, but that is not true. I seek your guidance as to what we can do to ensure that Ministers come to the Dispatch Box to correct the record.
rose—
Well, the Secretary of State appears to wish to say something. [Interruption.] Order. We are not going to continue the debate. If the Secretary of State wishes to correct the record or to explain in a sentence why he does not feel any need to do so, that would be acceptable.
I simply refer to the section of the hon. Gentleman’s speech where he says that air passenger duty has been frozen. He goes on to say: “This is not a sensible approach to transport policy.” So it is exactly what he says.
Well, very well. The matter will have to rest there. I simply say to the shadow Secretary of State that I might well have been intrigued to read the speech anyway, but in light of the fact that there are these five references, which he has just advertised to the House and the nation, I am now impelled to do so. It sounds a diverting read and it will form part of my late-night consumption in the days and weeks ahead and I am deeply grateful to him.
To ask the Secretary of State for Northern Ireland if she will make a statement regarding the extension of her power under the Northern Ireland (Executive Formation and Exercise of Functions) Act 2018 not to hold an Assembly election.
I am grateful for the opportunity to update the House on my progress towards restoring the Northern Ireland Executive and the other institutions established under the Belfast agreement In recent weeks, I have met the Northern Ireland parties and the Irish Government on a number of occasions. In those discussions, all five main parties reaffirmed their commitment to restoring a power-sharing Executive and the other political institutions set out in the Belfast agreement Although we have not yet been able to start a formal talks process, I believe that the five main parties and the Irish Government would be in favour of taking forward a short, focused set of roundtable talks to restore devolution at the earliest opportunity. Any such talks process will involve the UK Government, the five main parties and the Irish Government taking place in full accordance with the well-established three-stranded approach As you know, Mr Speaker, the period for Executive formation was extended by the Northern Ireland (Executive Formation and Exercise of Functions) Act 2018, which lasts until 26 March this year. I am incredibly reluctant to extend that period. The people of Northern Ireland deserve strong political leadership from a locally elected, accountable devolved Government and I am absolutely focused on achieving that outcome. But as we stand here today, there are only three options before the legislation expires next week. The first is an Assembly election, which is a costly exercise that would be highly unlikely to change the political dynamics. The second is an alternative approach to decision making in Northern Ireland, such as direct rule, which I do not believe is in the interests of the people of Northern Ireland—certainly they tell me that it is not what they want The third option is to extend the Act. This gives the political parties more space to come back together in the best interests of the people of Northern Ireland. It also provides the Northern Ireland civil service with the certainty and clarity that they need to continue to deliver public services in the absence of Ministers I have today laid before Parliament a statutory instrument to extend the period for the Act from 26 March 2019 to 25 August 2019. This means that from 26 August this year I will fall under the duty to propose a date for an Assembly election. Both Houses will have the opportunity to debate the instrument in the usual way, and the instrument cannot remain in force unless actively approved by both Houses.
I thank the Secretary of State for her initial response, but I remind the House that it is now well over two years since the Stormont Assembly last sat. In previous periods, we have sometimes had direct rule, but we have most certainly had Secretaries of State and Prime Ministers actively engaged in bringing the parties together Before the passing of the Act last October, the law required that the Secretary of State call an election. There were cynics who said that the reason for the legislation was that the Secretary of State wanted to avoid judicial review and being dragged through the courts to explain why she had failed to call the election. Operating on the bipartisan principle from which all Governments have benefited in the 20-plus years since the Good Friday agreement, we reluctantly accepted last October the need for the legislation. We did that, however, only after consultation and after the Secretary of State had let us know her plans. During the passage of the Act, she promised that she and the Prime Minister would spare no effort to bring the five parties together and get the Stormont Assembly back in operation. In October, it seemed incredible that it would not happen before this March, but five months on I discover through social media—it is unacceptable that consultation takes place through social media—that she plans to extend the period of the legislation I am bound to put this first question to the Secretary of State: has she given up on bringing the parties together? Nobody in Northern Ireland—none of the political parties—says to me they believe she has been sincere or energetic in her determination to get the parties together and the Stormont Assembly back up and running. The right hon. Member for Belfast North (Nigel Dodds) said in The House magazine that “her basic policy approach has been flawed in the sense that she has decided that Northern Ireland could just stand still, leave it to the civil servants. For that, that’s a glaring failure on her part.” Many people agree with that assessment Does the Secretary of State now accept that nothing will happen until after August and that we will drift along once again? If not, and given that she has so little credibility among the political parties, how does she now plan to drive the talks process forward in a meaningful and consistent way, and in a way we have not seen before? What will her best endeavours be, according to the needs of the Good Friday agreement, to move the situation on and bring the five parties together, and how does she intend to involve the authority of the Prime Minister in a way that previous Northern Ireland Secretaries have done with previous Prime Ministers I do not like ever to personalise politics, but I have to say to the Secretary of State that she has seen a massive haemorrhaging of trust in her role in recent weeks and months, because of inadvertent remarks she has uttered and her lack of energy in bringing the five parties together. The Secretary of State for Northern Ireland has to be a figure of both trust and authority. If she is not part of the solution, she becomes part of the problem, so my last question is this: does she honestly believe that she can regain the confidence of the five parties and the people of Northern Ireland and drive Northern Ireland forward?
I have to say I am very disappointed by the hon. Gentleman’s tone—he is someone I respect and have enormous time for I was incredibly disappointed when I saw that my conversations with political parties yesterday had been put out in press releases and ended up on social media. That was not the intention. I made this decision having consulted all five main parties—I spoke to them all yesterday, either face to face or over the telephone—and I also spoke to the Irish Government, and when I had consulted all those parties and said that I was minded to extend the legislation, but only if there was any prospect or possibility of the parties coming together, and they confirmed to me that that was the case, I contacted the hon. Gentleman. I, too, am disappointed that information was on social media before I had had the chance to contact him, but I assure him that I contacted him at the very earliest opportunity after I had made my decision based on my conversations with the parties I do meet the parties regularly, I do speak to them and I do hear from them. I brought the parties together in five-party talks to see whether we could find a way to get a process in place. Parties tell me that they want to do that, so I intend to spend the next few weeks working with them on actions that can be taken so that, when we are able to start a formal talks process, we are able to do so in a way that gives us the best chance of success The hon. Gentleman is right that two years is too long for the people of Northern Ireland to be without Ministers. I know that the parties want to find a way to go back into Stormont, and I want to do everything in my power to ensure that that happens. That is why, extremely reluctantly, I have laid the instrument today—an instrument that he will have 90 minutes to debate on the Floor of the House, and can vote against if he disagrees with it The hon. Gentleman says that he wants to see devolution restored in Northern Ireland, yet he consistently undermines that position by demanding that decisions are taken in Westminster—the very opposite of devolution. He also says that he wants to see Northern Ireland protected in Brexit, but he consistently votes against the only position that protects the Belfast agreement—the deal that is supported by his sister party in Northern Ireland, which would ensure that Northern Ireland does not move into chaos and would not wreck the prospects of any devolution in Northern Ireland. If he wants to start taking actions that match his words, he should do the right thing for Northern Ireland and vote for the deal next week.
I fully understand the need to table the written ministerial statement, but it states quite clearly that the proposed talks should be “short” and “focused”, and I assume that that is more than rhetorical. However, my experience of talks in Northern Ireland is that they are neither short nor particularly focused. Will the Secretary of State explain a little bit more about her thinking on the matter, as what she has written seems to suggest that there is a specific bone of contention within the current impasse in Northern Ireland that can be resolved through the short and focused talks that she envisages?
I thank the Chair of the Select Committee on Northern Ireland Affairs, whom I also notified of the decision yesterday. The reason for the comment about short and focused talks is that I genuinely believe that there is a will to re-establish devolved government. A number of issues need to be resolved, but we will ensure that work is done before the talks start. Let me be clear that I do not want to mislead people in Northern Ireland to think that a talks process will have success if I do not believe that it will. I will therefore only call that talks process if I believe that there will be success, but I believe that the issues can be dealt with through a short, focused process, and that is what I intend to bring forward.
I will call the hon. Member for Dunfermline and West Fife (Douglas Chapman) now, but I am sensitive to the needs of all those who have flights to catch; I will bear that very closely in mind.
Thank you very much, Mr Speaker I thank the Secretary of State for her statement this morning. Talks collapsed more than 12 months ago, and Scottish National party Members want to see their immediate re-establishment. The Secretary of State has told the Chamber many times that restoring devolution is her No. 1 priority, and I am sure the House will hold her to that. Will she therefore give the House a date on which the new, inclusive talks will begin, and tell us why she has presided over such an unacceptable delay? Can she also give us a commitment that the talks will be fully inclusive, including all the communities and parties involved; and what role does she see for the Irish Government in the process? Has she given some thought to appointing an independent mediator to assist in making the process fairer and faster Finally, does the Secretary of State accept that the wider instability caused by her Government through the Brexit process is the general reason that it is so difficult to restore this approach in Northern Ireland? Once we get through this madcap Brexit process, are we going to see faster progress in returning devolved democracy to Northern Ireland, instead of dictatorship from this place?
There is definitely not dictatorship from this House towards Northern Ireland. I am completely committed to devolution and all the institutions established under the Belfast agreement, and that is what we want to see restored as soon as possible. I would expect the talks to be five-party talks, because the best thing for Northern Ireland is for the five main parties to be involved in the talks and then to be able to form an Executive. In terms of a date, as soon as there is more information I will of course return to this House to update it, as I always do The hon. Gentleman is right that there is a very strong role for the Irish Government. It is quite clear that the two Governments have been involved in all talks processes that have been successful, and we would of course ensure that they were involved. On an independent mediator, I rule nothing out. I am looking at a number of options as to how we might restart the talks in such a way as to have the best success The hon. Gentleman talked about Brexit being a distraction. I think that perhaps the bigger distraction in Northern Ireland at the moment is the local elections, for which we will be going into purdah next week.
I think the whole House will want to see a return to devolved government in Northern Ireland, and we wish the Secretary of State well in these discussions. What would the consequences have been had she not taken the difficult but required decision to lay this statutory instrument to enable her to continue the powers that she has?
The reason for the legislation in the first place was that we need to ensure that there is some political cover for civil servants taking decisions. We want to make sure that public services continue to run and that civil servants can take decisions. They cannot change the law and they cannot take major policy decisions, but it is very important that they are able to take decisions on infrastructure, funding for schools and hospitals and so on. The alternative to extending the legislation is, as I set out earlier, one of two things: either a fundamental change in the way that decision making takes place in Northern Ireland—a step that I do not believe is in the interests of the people of Northern Ireland—or the requirement to call an election, which is a very costly exercise that I do not think would see any fundamental change to the political dynamic there.
I thank the Secretary of State for the consultations that she has had with us on this matter. Of course, this is the right thing to do in the circumstances. Regrettable though it is, it is the only possible course at the present time. However, could I suggest that she does something a bit more radical to take the initiative a bit more? What about calling the Assembly together? What about putting it up to the parties as to who is prepared to go into government now and who wants to sit outside? My understanding is that four of the five parties in Northern Ireland would go into government tomorrow, so why not put it up to people? Instead of all the talk about wanting devolution, let us see who will actually vote for it. Please do that.
I thank the right hon. Gentleman for his question. I am aware that he probably has an aeroplane to catch, so I will not detain him any longer than need be. I am looking at what we can do over the next few weeks to get the parties together to start the dialogue and to make sure that when a talks process does start, it has the best possible chance of succeeding.
I understand the reasons for this decision, but we are in a continued appalling situation where decisions are either not being made or being made by senior civil servants without any democratic accountability. What can the Secretary of State do to encourage the head of the civil service to put in place guidance on the transparency of those decisions and of decisions that are delayed or not being made, and on ensuring some consistency in who they meet and how they meet stakeholders and members of the public with concerns?
As the hon. Lady knows—she pushed very hard for this—there is transparency on decisions through reports laid in this place on decisions that have been taken. However, I will look at the points she has made and see whether such further work can be done.
I thank the Secretary of State for what she has said so far. Her decision not to hold the Northern Ireland Assembly elections is understandable, but it leaves Northern Ireland in uncertainty. School budgets are in crisis and waiting lists for operations grow. There is a need to target specific moneys across all Departments in Northern Ireland, but particularly towards Health and Education, as she said. What steps will she be taking to enable financial restrictions to be eased, including on the confidence and supply moneys that my party secured from her party to enable better government and better possibilities and strategies for Northern Ireland?
With specific reference to the moneys secured under the confidence and supply arrangement, those moneys are being released as appropriate by the Treasury, and they are included within the Northern Ireland budget. We legislated two weeks ago to put the 2018-19 budget on a statutory footing, and we will of course do so for the 2019-20 budget later on. Clearly this is not a good situation, and none of us wants to be in this situation, but it is the least worst of the options that are available to us.
The Secretary of State has a difficult job, and I know that the Prime Minister is very busy with other matters, but the reason I was the last direct rule Minister for Northern Ireland is that the then Prime Minister, Tony Blair, and the Taoiseach put the parties in St Andrews hotel in Scotland for an intensive period to come to a conclusion and to do what the right hon. Member for Belfast North (Nigel Dodds) said—to ask “Are you in Government, or are you not?” The answer out of St Andrews came, “Yes, we are.” The challenge is for the Secretary of State to bring the Prime Minister, the Taoiseach and the parties to the table and to put that deadline to them.
I agree with the right hon. Gentleman; I want him to continue to be the very last direct rule Minister for Northern Ireland, and I am determined that we achieve that. But he will know, from his great experience, that St Andrews was the culmination of work that had happened with the parties to bring them together. A lot of work happened before that short, intensive period of talks. I am looking at what work we can do before we bring together the parties in that short, focused talks period.
With the extension that has been announced, the breach of women’s human rights in Northern Ireland will carry on and not be addressed. How long do women in Northern Ireland have to wait for the Secretary of State to do the right thing by them?
The hon. Lady has campaigned on that matter for many years. She has introduced private Members’ Bill, ten-minute rule Bills and so on, and I know she feels very strongly about it. An amendment was made to the legislation on guidance. It is clear that the civil service in Northern Ireland has a duty to monitor the situation with regard to changes in human rights laws and international law, but I continue to monitor it myself.
Further to what has been said about the importance of talks to get the Assembly up and running again, and the point made by the hon. Member for Dunfermline and West Fife (Douglas Chapman), does the Secretary of State feel that it will be vital to have an independent facilitator to chair the process, because the UK Government—rightly or wrongly—may appear to be compromised by their current arrangements in this place with the DUP?
As Secretary of State for Northern Ireland, I am independent of what happens with regard to relationships on voting—those are a matter for Whips—but I am looking at all the options for how we can have success. When I have seen a willingness and a desire to restore devolution, I do not want to bring the parties together and fail to do so. We need to ensure that we have the best chance of doing it, and I will look at all options to ensure that that happens.
On a point of order, Mr Speaker.
It should really come after the business statement.
He is very tempting.
Indeed. Yes, I think I will indulge the right hon. Gentleman because of his natural courtesy.
I do not want to be too courteous, Mr Speaker, because Quentin Letts may accuse me of being your toady and crony This is a serious point of order. You may recall that I asked you on Tuesday about your ruling on the Government not bringing back the same motion and whether, if they change it substantially, with a unilateral declaration, that will change something. I read all over the media last night that some people called “Cooper-Boles” are bringing back an amendment. Apart from the presumption that you would select that amendment, surely under your ruling, it would have to be substantially different, would it not?
I tried to explain to the right hon. Gentleman before that I will deal with these matters in the particular when there is a substantive matter for me to consider. Let me absolutely clear: what I am not going to do is to pronounce before it is necessary to do so on the hoof, on the back of a colleague, however distinguished and much loved, for whom the matter is at that moment especially material. That is not the way to do business here. I will rule as and when it is necessary to do so, and that moment—I say it with all courtesy to the right hon. Gentleman—is not now.
Getting away with blue murder.
I am not going to comment on that, but I am always grateful to the right hon. Member for Gainsborough (Sir Edward Leigh). He referred to newspapers. I really do not take any notice of them—for goodness’ sake, I am trying to concentrate on doing my duty. I am not preoccupying myself with newspaper reports or people who scribble columns. That really is of no significance or concern to me whatsoever. It never has been, and it certainly is not now.
Will the Leader of the House please give us the forthcoming business?
The business for next week will be: Monday 25 March—Debate on a motion relating to section 13(4) of the European Union (Withdrawal) Act 2018 Tuesday 26 March—Consideration of Lords amendments to the Healthcare (International Arrangements) Bill, followed by consideration of Lords amendments to the Offensive Weapons Bill, followed by a debate on a motion relating to section 5 of the European Communities (Amendment) Act 1993 Wednesday 27 March—Motion to approve the draft Food Additives, Flavourings, Enzymes and Extraction Solvents (Amendment etc.) (EU Exit) Regulations 2019, followed by a motion to approve the draft Protecting against the Effects of the Extraterritorial Application of Third Country Legislation (Amendment) (EU Exit) Regulations 2019, followed by a motion to approve the draft Animal Health, Plant Health, Seeds and Seed Potatoes (Amendment) (EU Exit) Regulations 2019, followed by a motion to approve the draft Regulatory Reform (Scotland) Act 2014 (Consequential Modifications) Order 2019 Thursday 28 March—General debate on beer taxation and pubs—[Interruption]—during which beer may need to be served, followed by a general debate on permitted development and shale gas exploration. The subjects for these debates were determined by the Backbench Business Committee Friday 29 March—The House will not be sitting Further to this business statement, as my right hon. Friend the Prime Minister said yesterday, she has written to Donald Tusk seeking an extension to article 50 until the end of June. Any extension requires the unanimous agreement of EU member states and must be agreed by the European Council. The Government will seek to amend domestic legislation to alter the exit date set out in the withdrawal Act in line with any such agreement once it is reached, and will bring forward a statutory instrument accordingly. I will therefore make a further business statement next week, as necessary, to provide time for consideration of the legislation to alter the date of exit Similarly, as my right hon. Friend the Prime Minister said yesterday, the Government continue to believe that the UK should leave the EU with a deal, and we intend to bring forward proposals for a third meaningful vote. The precise nature and timing of this debate will, to some extent, depend on the outcomes of this week’s European Council. I shall therefore make a further business statement next week, as appropriate, to provide time for consideration of a further motion under section 13 of the European Union (Withdrawal) Act As my right hon. Friend the Prime Minister said yesterday, we stand in solidarity with the people of New Zealand, following the appalling attack in Christchurch. I was also horrified to hear that several mosques in Birmingham were attacked last night. This rise of Islamophobia in the UK and across the world is deeply concerning, and we must stamp out this kind of vile hatred wherever we see it. We also send our thoughts and deepest sympathies to those affected by the cyclone in Mozambique, Malawi and Zimbabwe, those killed and injured in Utrecht and those caught up in the terrorist incident in Stanwell Yesterday was the International Day of Happiness, and I do have a number of items that I hope the House will be genuinely happy to hear about. First, the review of the independent complaints and grievance system has officially been launched this week, and I know Alison Stanley will bring her considerable experience to bear as the chair. Secondly, the Joint Committee looking at the draft Parliamentary Buildings (Restoration and Renewal) Bill has published its report today, and I am very grateful for its hard work, and particularly for the chairmanship of my right hon. Friend the Member for Meriden (Dame Caroline Spelman). Thirdly, the first newly restored clock face of Big Ben has been uncovered, and the stunning original blue colouring can now be seen. Fourthly, all parliamentarians will, I hope, be proud and pleased of their efforts with their private Members’ Bills. I can report that 10 have now received Royal Assent in this Session, which is the joint highest total since 2003 As a magnanimous rugby fan, may I very much congratulate Wales on winning the six nations grand slam, Scotland on retaining the Calcutta cup in a breathtaking game at Twickenham on Saturday, and last but by no means least—I am sporting my Northampton Saints jacket today—my own local team on winning the premiership rugby cup? Finally, I would like to wish those celebrating it a very happy Nowruz.
The Leader of the House read out the business for next week, but that is not really next week’s business, is it, since she will come back to the House with some emergency business motions? This is a contempt of democracy and parliamentary democracy. The Prime Minister said she would come back to the House with a meaningful vote—it will actually be meaningful vote 4, because she pulled the vote in December, when Parliament should have had the chance to debate a meaningful vote but did not How will the Prime Minister negotiate with the EU if she does not know the will of the House? What was the point of the statement yesterday, other than to set up a hostile environment between the Prime Minister and the House? The Leader of the House says that the House will not sit next Friday, and that there will be further business. Will she confirm to the House, honestly, whether we will sit on Friday, and whether we will debate the statutory instrument that extends the date of us leaving the EU Last week I asked about dates for Opposition day debates, and the Leader of the House said that there was “incredibly important” business for the week ahead. Opposition days are incredibly important business, and they are central to our democracy. On Monday, my hon. Friend the Member for Bishop Auckland (Helen Goodman) raised a point of order, and you responded, Mr Speaker, by saying that “colleagues would think that it was a democratic and seemly thing to do to ensure that the principal Opposition party had the requisite allocation of days”.—[Official Report, 19 March 2019; Vol. 656, c. 788.] That is why we take great exception to the Prime Minister’s comments that we are not interested in other matters. Week after week I have stood at the Dispatch Box and asked the Leader of the House not just for Opposition days, but for statements and debates on local government, the NHS, social care, education, and cuts to our police services. My colleagues have asked for urgent questions on issues that affect our country. It is not us in Parliament who are contemplating our navels—I have never heard such unparliamentary language about hard-working colleagues from all sides of the House. We sit on Select Committees and Delegated Legislation Committees—that is what we do Let us remind ourselves: the Government had Lancaster House, Mansion House, Florence and Berlin. Each time we begged the Prime Minister for clarity on the negotiations, and each time she said nothing—“I don’t want to give a running commentary; Brexit means Brexit”. She should have given us broad heads of agreement right at the start, so that she could understand what Parliament wanted. The Chequers agreement was put to the Cabinet in July, but the Leader of the House and some of her pals preferred to have pizza parties instead of supporting their Prime Minister. Secretaries of State have resigned—we are now on our third Secretary of State for Exiting the European Union. Ministers have resigned. This is a crisis of the Government’s own making, and the Cabinet is divided Last week, bizarrely, I was in the Lobby with the Prime Minister, but the Leader of the House and seven of her colleagues were in another Lobby—they voted against the Government’s own motion. That included the Brexit Secretary, who wound up the debate by saying: “It is time to put forward an extension that is realistic.”—[Official Report, 14 March 2019; Vol. 656, c. 628.] He then voted to reject his own argument. Does the Leader of the House agree with Cabinet responsibility, and could we have a debate about what it means? It is no good her rounding on her colleagues in Cabinet, and then rounding on my colleagues in the Chamber, saying that she does not agree with them Let me again raise something that is not about contemplating our navels. Interserve, which employs 45,000 staff in the UK and works on £2 billion of Government contracts, has been put into administration. Tussell data shows that Interserve was handed public contracts worth hundreds of millions of pounds in the run-up to its collapse, despite announcing a series of profit warnings—[Interruption.] It is not funny; it is people’s lives. The Government are failing to ensure the viability of their outsourcing contracts Last July the Public Accounts Committee described the NHS’s outsourcing to Capita as a “shambles”, and the National Audit Office found that the £495 million contract to provide recruitment for the British Army had been beset by problems. The probation service has been described as “in crisis” since it was partly outsourced. That is what the public are tired of. A third of Government spending goes on external contractors and suppliers. When can the House have proper scrutiny of the failure of Government outsourcing contracts Last week, the Leader said that children should be in school. Some 1.4 million children and young people took part in the school strike against climate change. They disagree with her. I do, too. This is about education and citizenship. What to do to influence decision makers is vital. This is what 16-year-old Greta Thunberg said: “You cheat when you can because all that matters is to win…We need to start co-operating and sharing the remaining resources of this planet in a fair way.” While the Government have sat contemplating, they could have invested in the Swansea Bay tidal lagoon and in solar power, ended the cuts to feed-in tariffs and initiated a scrappage scheme for diesel cars. That is going to affect climate change I want to mention the funeral service of our dear colleague Paul Flynn tomorrow. My hon. Friend the Member for Rhondda (Chris Bryant) has managed to secure a service in St Mary Undercroft. We thank the chaplain, Rev. Rose Hudson-Wilkin, and you, Mr Speaker, for indicating that you will be there On the second anniversary of his death, we remember PC Keith Palmer and those who died on Westminster Bridge. We think of the amazing people who protect us and who give their lives up to do so I, too, want to echo the words of Prime Minister Ardern. It is up to all of us to reject racism and hatred of anyone who is different. To the people of New Zealand, we are you and you are us. Rest in peace.
Before the Leader responds, and in the light of what the shadow Leader has said about the second anniversary of the death of PC Keith Palmer, I can inform the House that I intend that there should be a one-minute silence tomorrow in the Chamber, supported, I would hope, by people observing our proceedings. The intention is that that minute’s silence will take place at 11 o’clock.
First, I share the hon. Lady’s tribute to PC Keith Palmer. I was delighted to be at the memorial recognition of his great sacrifice and the unveiling of the memorial to him. She is absolutely right to pay her own tribute. I also share in her pleasure that there will be a memorial service for Paul Flynn, a much-missed colleague. I echo her words about the appalling atrocity that took place in New Zealand. It is absolutely horrendous. We all hope that the communities in New Zealand can come together, as they are doing, and we support all those who have been so tragically affected The hon. Lady asks about the meaningful vote next week. She will recognise that, as I said in my business statement, this is a fluid situation and we are waiting for the response of the EU27 to our request for an extension, which the Prime Minister has taken to them in response to the requirement of this House that she do so. As soon as we have a response from the EU Council, I will be able to update the House on when we can bring forward a meaningful vote and a debate next week. But it is certainly the Prime Minister’s intention to do so. Likewise, in terms of bringing forward the statutory instrument, hon. Members will know that, under the EU (Withdrawal) Act 2018, it is required that that statutory instrument be approved by both Houses. It is therefore vital that we find time for that as soon as we can The hon. Lady asks about Opposition days. We have debated a range of secondary legislation this week. I have announced important business for next week, including the section 13 debate on Monday and Lords amendments to two important Bills, the Healthcare (International Arrangements) Bill and the Offensive Weapons Bill. This week, we have had debates on two statutory instruments requested by the official Opposition. I will, of course, continue to consider her requests for further dates I absolutely agree with the hon. Lady that all Members right across the House have a huge interest in matters outside of Brexit. There is no doubt about that. I think the Business question every Thursday demonstrates the range of different interests across the House. All of us share a desire to be able to talk about things not Brexit-related that are so important to people, so I completely agree with her there What I will say about the Prime Minister’s speech yesterday is that what she was seeking to invoke among all parliamentarians was just the absolute reality that in a hung Parliament it is for every Member to seek to support good governance. I think that we can all be proud of the fact that in this Session alone we have introduced over 50 pieces of primary legislation, more than 40 of which have already received Royal Assent. In a hung Parliament, that demonstrates the House’s ability to work together in order to reach consensus, agree concessions and act in the national interest What the Prime Minister is seeking is for all individual Members to recognise that her withdrawal agreement and future declaration offer the means by which we can leave the European Union, in line with the will of the people as expressed in the referendum, but at the same time the significant minority of people who want to remain in the EU will also have their concerns met by a very close future economic and security partnership. I therefore urge all colleagues, right across the House, to consider the Prime Minister’s deal very carefully The shadow Leader of the House asked whether I believe in collective Cabinet responsibility. Of course I do. I have totally supported the Prime Minister’s desire to get a vote through this place. I have always been absolutely clear—in the press and in this Chamber—that I support a withdrawal agreement and a political declaration that deliver the will of the people, but that at the same time continue a close, collaborative relationship with our EU friends and neighbours The hon. Lady asked about Interserve, and she was absolutely right to do so. The Government certainly welcome the announcement that Interserve made last Friday regarding its refinancing, which will not affect the operational part of the company. It will bring the company the stability required to allow it to compete for future business and to continue to deliver good-value public services for the taxpayer. It is in the taxpayer’s interests to have a well-financed and stable group of key suppliers, so we welcome the actions that Interserve has taken The hon. Lady asked about schools and climate change. Let me say again that I absolutely welcome, support and endorse the determination of young people to do everything they can to support all those experiencing the negative effects of global climate change. We should do everything we can to support our environment around us. The United Kingdom ratified the Paris agreement in November 2016. More than 50% of UK electricity came from low-carbon sources in 2018, making it a record year for renewables, under this Conservative Government. We have cut the use of plastic bags by 86%, through our plastic bag charge. We have reduced emissions faster than any other G7 nation. The latest figures show that we have reduced greenhouse gas emissions by 23% since 2010. There is obviously a lot more to do, but I commend all young people who show their passion for the subject. At the same time, I reiterate that education is the best gift that a society can give its young people.
W. B. Yeats said: “Happiness is neither virtue nor pleasure…but simply growth. We are happy when we are growing.” We should therefore all have more to smile about, because the UK has indeed grown, according to the world happiness index—we have gone up the table. Yet so much of our discourse here is either doom-laden or dull, and Government perpetually risk being meanly managerial or meekly mechanistic. So will the Leader of the House arrange for a debate that will enable us to measure Government policy in terms of the difference it makes to quality of life; to gauge the difference it makes to wellbeing? We here must make it our mission to inspire and our duty to enthral. We must dare to dream.
I completely agree with my right hon. Friend. I think that his analysis is absolutely right. If I may say so, I think that all hon. Members, right across the House, come to this place to try to make the world around us a better place. It is vital that we occasionally take the time to consider how well we are doing against that challenge I think that there is much to celebrate. We should celebrate our economy, given that employment is at a record high. We should celebrate the tackling of inequality, given that the real-terms wages of the lowest paid are growing faster than those of anyone else. We should celebrate the Government’s determination to tackle loneliness, to consider more suicide prevention measures, and to invest significant sums in our NHS to support people with mental health problems. I think that what we should seek to do, across the House, is support each other sometimes, and celebrate our achievements.
I thank the Leader of the House for announcing the almost fantasy business for next week Following the Prime Minister’s statement last night, we shall have to have an emergency debate about Members’ security, because I am pretty certain that a few of us are feeling just a little bit more insecure this morning. It was the height of irresponsibility for the Prime Minister to pitch public against Parliament in the current climate, on the back of real issues of intimidation and threats against Members in all parts of the House. This is her Brexit, designed, administered and delivered by her Government. An ugly environment has been created in the last couple of years because they chose to divide the country on this toxic issue to try to resolve tensions within their own party, while refusing to consider any alternatives to their own singular approach. How dare the Prime Minister blame Members of Parliament for this mess? I will never stop fighting for what my country and my constituency voted for. I will stand by them, regardless of the “them and us” climate that the Prime Minister is trying to create. I will tell the House what undermines democracy and erodes trust in Parliament: it is this Government ignoring agreed outcomes in the House. We vote again and again for something and it is then casually dismissed, or we continually reject something only for it to be brought back again and again. For example, where is the legislation that will take no deal off the table, which the House has agreed to twice? Democracy does not mean that it is the Prime Minister’s way or the highway We will be out of the EU a week tomorrow unless something is done. We do not know on what basis that will happen, and we do not know whether there will be an extension. The EU has said that it will grant an extension only if the House passes the dead, defeated deal. When will it come to the House—it will not be on Monday; that is just part of the Government’s obligations—and how will it be significantly different in order to meet your ruling, Mr Speaker? How will it be designed in that respect? This must happen next week, because we are supposed to be out of the EU by next Friday The situation is totally unbelievable. This disaster is part constitutional crisis, part farce, but 100% Tory. How dare the Government try to blame us for this mess?
The hon. Gentleman will not be surprised to hear that I do not share his view at all. Let me say again that this House has a duty to decide what it does want. The hon. Gentleman asked, “Where is the legislation to take no deal off the table?” He knows that the House voted to leave the European Union on 29 March. That is the legal position. How does he suggest that we legislate to take no deal off the table unless it is by agreeing a deal? You cannot legislate to take no deal off the table. The House has already rejected a customs union, a second referendum and a no-deal Brexit, and it has rejected the Prime Minister’s deal. The House has said a lot about what it does not want to do; it needs to say what it does want to do Let me quote the hon. Gentleman’s words back to him. He said that he would never stop fighting for what his country voted for. His country voted to remain part of the United Kingdom.
With regard to the meaningful vote which we are going to have apparently next week—
Or not.
Or not. May I urge the Government to be bold and decisive in order to comply with your ruling, Mr Speaker, and to change the wording significantly so that we can have the vote that we all want? May I suggest that one way forward is by way of the unilateral declaration? A unilateral declaration can of course be changed unilaterally: we do not need the EU to agree. I suggest that we should try to persuade our colleagues in Northern Ireland that, by beefing up this declaration, we can ensure it is not necessary to prove bad faith; we just have to prove that negotiations have broken down and then we can exit the backstop. Also, it should be conditional; we sign up to this treaty on condition that the declaration is not refused by the EU. All we need to prove is that it does not ratify. So let’s be bold, let’s be decisive, and let’s get this vote into Parliament.
I am grateful to my right hon. Friend for his very helpful suggestion and I know this is something he has long campaigned for. As I have said to other Members, the Government will bring back the meaningful vote next week and it will be within terms necessary to enable the House to take a further view on it. But I do really from the heart urge all Members to just consider the fact that we as a House have agreed to undertake to leave the EU and the Prime Minister’s deal enables us to deliver on the referendum while at the same time taking careful account of the 48% of the people of this country who did not want to leave the EU. So what it also delivers is a close economic and security partnership with our EU friends and neighbours. So it really is having our cake and eating it and I urge all hon. Members to give it their very careful further consideration.
This is a day when I do not like being away from home, because back home my friends, neighbours and my whole Haredi Jewish Orthodox community are going bonkers because it is Purim. So may I wish my whole Orthodox Haredi Jewish community a very happy Purim, because they love it; it is a great time of year for them If any Chamber time should become available at short notice, the Backbench Business Committee has applications that would readily fill any void for the use of time. We have just had an application for a debate on the definition of Islamophobia, which I think would be very topical, and there are other applications on the stocks for debates about financial exclusion, the future of access to cash, the closure of courts and the effect on access to justice, reducing the use of physical restraint on children in educational and health settings, which also would be timely and important, and school funding, which is a heavily subscribed application. If any time becomes available even at very short notice we will happily fill that void.
As ever I am very grateful to the hon. Gentleman for prior notice of some of the very important topics that Back Benchers would like to speak about. I think that goes to the shadow Leader of the House’s point that parliamentarians are keen to talk about a huge range of topics. I absolutely support them and pay tribute to them for that. I will of course consider giving the hon. Gentleman time.
On Sunday I again hosted the Contact the Elderly Brechin community afternoon tea at Farnell church. It was a fantastic event at which people put the world to rights—and we also had far too much cake potentially. Will my right hon. Friend join me in celebrating the fantastic work of Irene Heron and Jean Malcolm, two local community champions, and may we have a debate in this place about how we can all work collectively to combat loneliness?
My hon. Friend raises a very important issue. I congratulate her on doing so and on the great charity work going on in her constituency, and I join her in paying particular tribute to Irene and Jean. Loneliness can cause significant ill health, yet up to a fifth of the UK adult population feel often or always lonely. To tackle this pressing public health issue we have established a cross-Government fund dedicated to a cross-Government strategy that has almost 60 new policy ideas from nine Government Departments. So the Government are determined to tackle this. My hon. Friend and many other hon. Members do their own support in their own constituencies and deserve great credit for doing so.
Is the Leader of the House aware that yesterday was the 102nd birthday of Dame Vera? [Hon. Members: “Lynn.”] Yes, Lynn. Sorry; I had a senior moment there. One of her most famous tunes was “Coming in on a Wing and a Prayer” and I have to say that many of us, on all Benches, are a little upset about the Prime Minister’s remarks yesterday. We spend every minute of the day—every waking hour, and stay awake at night—thinking about this dilemma and to undervalue parliamentarians’ dedication and commitment is not good at all for the current discourse May we have an early debate? Many of my constituents want to know about the secret sources of power. They thought they knew about the Cabinet and collective agreements, and about where power lay in the Conservative and Labour parties, but they do not understand why something called the European Research Group is now wielding immense power behind the scenes. They do not understand what the pizza club is and how it can wield such power that it can stop an extension of the period before we leave the European Union. May we have an early debate on this, because going home on a wing and a prayer is not good enough for the future of this country?
I did not know that it was Dame Vera Lynn’s 102nd birthday, and I thank the hon. Gentleman for raising that. However, I did know that today is World Poetry Day. I was tempted to come up with some of my own poetry, but I did not think that the House would be in the mood for it, so I did not bother. I am sure that hon. Members will have their own views on that. The hon. Gentleman makes a serious point, however. I do not believe that the Prime Minister was in any sense seeking to denigrate MPs’ commitment to the issue. She was urging colleagues to consider the duty to make an active decision about what they want to see. In a hung Parliament, that is the challenge that faces us. A Government with a big majority will, on the whole, be able to get their business through, but in a hung Parliament, all right hon. and hon. Members have to give great consideration to good governance. The Prime Minister is urging all Members to consider her deal again, because the reality is, as the hon. Member for Perth and North Perthshire (Pete Wishart) has pointed out, that the legal default position remains that this House voted to leave the European Union on 29 March and the only way we can avoid that is either by extending article 50, as the Prime Minister is seeking to do, or by this House coming up with an alternative solution, which it has so far been unable to do.
I know that there will be a debate on knife crime in Westminster Hall next week, but I wonder whether the Leader of the House could arrange for a Home Office Minister to make a statement about the repellent rise of knife crime? Clitheroe, in my constituency, must be one of the most idyllic and wonderful towns to live in, yet last night, two youths with a knife, one of whom was 16 years old, stabbed another one that they knew. The police inform me that the injury is not life-threatening, and we pray that that is the case, but none the less, if this can happen in a place such as Clitheroe, this tells us that we need to do a lot more, whether through schools, through parents, through greater police numbers or through stop and search. All I know is that if we do nothing, knife crime will rise even further.
My hon. Friend raises an important issue that is often raised at business questions and at other times. We have had several debates on it in the House over the past few weeks, and it is quite right that we do so. He will be aware that the Chancellor announced an extra £100 million in the spring statement for a short-term intervention to ensure that more police officers could be made available through overtime measures to tackle this. We have a serious violence strategy and a serious violence taskforce, and we are bringing in the Offensive Weapons Bill, which will make it harder to get knives. It will contain provisions for a knife crime prevention order, which will be absolutely vital. We are also extending stop-and-search powers and having a landmark review of drug misuse. The Government are taking action at every level, but ultimately we also have to look at prevention, and perhaps the most important part of that is the Government’s commitment to trying to ensure that young people are not tempted into a life of knife crime.
Order. Just before I call the right hon. Member for Cynon Valley (Ann Clwyd), I hope the whole House, and everybody present in the Palace of Westminster, will want to join me in congratulating the right hon. Lady on her birthday.
Hear, hear!
Thank you, Mr Speaker. Has the Leader of the House noticed the alarming headlines about the unprecedented drug shortage linked to Brexit? The chief executive of NHS Providers has reported a shortage of 300 different drugs in one English trust alone. Hospital chiefs are reporting shortages of hundreds of different types of medicine, including drugs used to treat cardiac problems and high blood pressure, so can we please have a debate on the issue? Our constituents need some sort of explanation of how Brexit is affecting the supply of medicines, when previously we had no problems.
First, I wish the right hon. Lady a very happy birthday. Secondly, I hope I can reassure her that the issue with a potential no-deal Brexit would be one of capacity at the different borders. Since the UK is still a member of the European Union, there are no problems with borders and accessibility, but she makes a serious point. I am afraid that I am not aware of those reports, but if there are shortages of medicines, that is a serious issue. We have Health and Social Care questions on Tuesday 26 March, and I encourage her to raise the matter then, but I hope that I can reassure that borders are currently fully open, so I cannot see that the issue would be in any way related to Brexit.
The United Kingdom has a proud tradition of entrepreneurial spirit, and I am sure that it will continue to flourish as we leave the EU. May we have a debate in Government time on the confidence that entrepreneurs have in this Government’s policies?
My hon. Friend makes a good point. Entrepreneurs’ confidence in the policies of this Government should be celebrated by everyone. The number of business ventures started in 2018 rose by 4.7% to over 640,000; there have been 1.2 million more business start-ups since 2010; exports are at a record high; and we are cutting corporation tax to the lowest rate in the G20 and cutting business rates, which is worth more than £13 billion to businesses. Our economy has grown for 24 quarters in a row and is now over 18% bigger than it was in 2010. This Government are dealing with our debts, keeping our economy strong, investing in public services and keeping taxes low for working people.
Hate is on the march. Last night, mosques across Birmingham were attacked, including the Slade Road mosque in Erdington. Fear stalks the Muslim community, but so too does a determination never to surrender to the forces of fascism. I pay tribute to the different faiths across Birmingham that are rallying in support of the Muslim community. Can we have a debate on the importance of celebrating our diversity, standing together in national unity and rejecting anyone who fans the flames of prejudice and division?
I wholeheartedly agree with the hon. Gentleman. As I said earlier, our hearts go out to those who were affected by the attacks on mosques in Birmingham last night. It is absolutely unacceptable to see any form of religious or racial prejudice in our free and open society. I know that many Muslim communities are feeling vulnerable and anxious, but they should seek comfort from knowing that the Government are doing everything we can to tackle hate and extremism. One practical thing that we are doing is doubling next year’s places of worship fund, with the Home Secretary this week boosting funding for protective security to £1.6 million to reassure communities and to safeguard mosques and other places of worship. In addition, a new £5 million fund will provide security training. However, I agree with the hon. Gentleman we must stamp out this type of vile abuse.
This week we have seen record employment numbers, with especially great opportunities for women, for those with disabilities and for young people. I think of the brilliant young apprentices I recently met in Chelmsford when I say that we should never forget that, less than a decade ago under the last Labour Government, there were 1 million young people not in employment, education or training. May we please have a debate in this House on the brilliant opportunities for employment under this Conservative Government and how that compares with the disaster under Labour?
My hon. Friend raises an important point, and there are now 429,000 fewer young people out of work than in 2010, which means that the number of young people out of work has almost halved since the Conservatives came into office. Nearly four fifths of jobs created since 2010 are full time, with 2.6% of our workforce on zero-hours contracts—a reduction over the last year. Employment is expected to be higher than forecast over the next five years, according to the Office for Budget Responsibility, which forecasts 800,000 more jobs to be created by 2023. Those are real reasons to be proud of the success in our economy and the prospects for our young people.
I know that the Leader of the House believes that Members of Parliament should be able to perform their duties without fear for their safety. In recent weeks, like many MPs, I have been accused of being a traitor, and I have received Facebook posts saying that, along with the two other Hull MPs, I should be shot and hanged Does the Leader of the House agree with the Prime Minister’s statement last night, in which she pitted Members of Parliament against the general public? May we please have a debate in this House about patriotism and about how Members on both sides of the House love our country and want to make sure that we get the very best for our country? There is much more that unites us than divides us.
I completely agree with the hon. Lady that colleagues on both sides of the House—she is a perfect example—all want to do the best for our country and our society. I totally endorse her thoughts that MPs need to be treated with respect and given the opportunity to represent their constituents and their country in alignment with their own beliefs and with doing the best they can possibly do. I pay tribute at all times to all Members of Parliament, and I will do everything I can to ensure that we are all able to go about our business and do a good job for our constituents and for our country.
I thank the Leader of the House for what she said in response to that very powerful inquiry from the hon. Member for Kingston upon Hull North (Diana Johnson). I have said it before, in the light of some extremely ominous coverage of Members some months ago, but I will say it again, because it brooks of no misunderstanding or contradiction: none of you is a traitor and all of you are doing your best This should not be, and I am sure it will not prove to be, a matter of any controversy whatsoever. From the Chair, let me say that I believe passionately in the institution of Parliament, in the rights of Members of this House and in their commitment to their duty—I use the word “duty” in the singular advisedly. The sole duty of every Member of Parliament is to do what he or she thinks is right. There is nothing, in my judgment, to be added.
I would like to introduce you to another anniversary, Mr Speaker, but it is not a particularly pleasant one: this is the fifth anniversary of the annexation of Crimea by Russia. Will my right hon. Friend allow us a debate so that we can consider this issue and also continue our condemnation of Russia for its annexation of that part of Ukraine?
My hon. Friend raises a serious issue, and I know that the House and the Government have condemned the annexation of Crimea. It hardly seems possible that five years have already gone by since those terrible events. I encourage him to seek an Adjournment debate or a Back-Bench debate so that all hon. Members can express their support for resolution of this annexation.
The principles that underlie the role of MPs were set out 250 years ago by Edmund Burke: not only to be accountable to and listen to our constituents, but to observe our own conscience and judgment. Those principles were seriously undermined last night by the Prime Minister, in one of the most contemptuous statements that I have ever heard—it is up against some stiff competition. May I ask the Leader of the House, again, whether she agrees with what the Prime Minister said last night?
Is this a Labour Whip’s handout?
Order. Let us grow up. Do grow up, for goodness’ sake. This is not a matter of party political hackery. Let us have some seriousness of purpose and mutual respect. The hon. Member for Leyton and Wanstead (John Cryer) is an experienced Member of the House. He has asked an honest question, to which I know the Leader of the House will honestly reply. For goodness’ sake, let us raise the level.
Mr Speaker, may I just say that your response does not raise the level? I will leave it there.
Order. Resume your seat, Leader of the House. My response sets out the constitutional position that has applied to Members of the House of Commons over generations, and I cannot for the life of me see or believe that there is anything remotely controversial about what I have said.
In response to the point made by the hon. Member for Leyton and Wanstead (John Cryer), what I wanted to say is that I will speak for my own views when I say that I have the highest regard for Members from right across this Chamber. All hon. Members do exactly as they think is right for their constituents and for their country, and it is absolutely right that they should continue to do so. What I think the Prime Minister was urging upon all hon. Members is to recognise that in a hung Parliament it is incumbent on us all to ensure that there is good government, because, by definition, it is important that we all participate in ensuring progress for our country, as indeed we have done through more than 40 pieces of primary legislation in this Session alone, where we have been able to come together in the national interest to make progress on certain areas of legislation, ranging from counter-terrorism to tenants’ fees, all manner of automated vehicles and so on. We have been able to work together to come to a conclusion and make a positive statement about the way the country should go. I think that the Prime Minister was seeking to urge all right hon. and hon. Members to look carefully at the reality, which is that there is a means by which we can deliver on the referendum, while ensuring we keep a close and collaborative relationship with our EU friends and neighbours. Alternatively, the legal position that this House voted for is to leave the EU on 29 March without any other arrangements. What the Prime Minister is seeking for this House to do is to come together to support a way forward. The House has not so far done that.
For inclusiveness, let me say that it is currently not only the festival of Purim, but the Hindu festival of Holi This weekend, we will have the national hospital radio awards ceremony, so may I send my best wishes to Radio Harrow, which has been nominated for eight awards? It comforts patients at Northwick Park Hospital, where many of my constituents have to go. I also send best wishes to Radio Mount Vernon, which is celebrating its 50th anniversary. May we have a debate in Government time on the wonderful work done by volunteers in our hospital radio stations, who provide comfort to patients at the time when they need it?
My hon. Friend is absolutely right to pay tribute to the amazing work done by volunteers in hospitals. He raises the particular issue of those who run hospital radio stations. Having visited local hospitals myself, I have absolutely seen at first hand the warmth and support that they give to people—and, frankly, the distraction that they provide for people who are undergoing painful procedures—so I am happy to join my hon. Friend in thanking them and paying tribute to them for all the good work they do.
Last night, the Prime Minister told the people of the United Kingdom “I am on your side”, but presumably she was not speaking to anyone who voted to remain, such as the majority of the people of Scotland; she was not speaking to Europeans living and working in the UK; and she was not speaking to those who are dissatisfied with her deal. Will the Leader of the House make a statement setting out her views on whether she thinks it is wise or healthy to set Parliament against the people, reject any notion of personal responsibility, and ignore the genuine concerns about Brexit in this House and throughout the UK?
The Prime Minister’s deal absolutely does seek to resolve the issues and concerns for EU citizens living in the UK and for UK citizens living in the EU. It seeks to reassure those who wanted to remain in the EU by securing a close economic and security partnership with our friends and neighbours in the EU. Very importantly, it also delivers on the will of the people expressed in the referendum, which is something that the House has voted to do. My own assessment is that the Prime Minister’s proposal—the withdrawal agreement and the future political declaration—does seek to achieve the very complicated balance of bringing all sides together. We can all point to parts of her deal that we do not like—every single one of us can do that—but it is a compromise that really does seek to provide something for everyone and the best possible combination of outcomes that enables us to deliver on the will of the people.
Almost every week in the Chamber, we hear Members raising issues to do with bank closures in their constituencies. Over the past two months, Santander and now Barclays have announced that they are leaving Cleethorpes. People need financial advice as well as access to banking services. Will the Leader of the House find time for a debate in which we can explore ways to create financial hubs in town centres, to which people can go for advice and to obtain banking services?
My hon. Friend raises an important point about the issue of the last bank in town and access to financial services, which has come up in the Chamber many times, and he is quite right to raise it. Obviously, we recognise that the way people access financial services is changing, with more people going online and so on, but the industry’s access to banking standard requires banks to carry out a number of steps before they close any branches. Some are coming forward with innovative ways to deliver ongoing banking services, and of course the Post Office now delivers access to banking services, very often at more flexible times—for example, at weekends and so on—than a bank was previously able to offer. My hon. Friend raises an important point, and I encourage him to seek an Adjournment debate to talk about the issues in Cleethorpes.
The Leader of the House has said that we should seek a cross-party consensus on the way forward, and I agree with her, which is why I wonder what thought she has given, in respect of her role, to the House voting on options in parallel, so that we can end the game-playing and move forward.
I completely understand the hon. Lady’s desire for many more varied options to be brought forward, and I hugely respect the hon. Lady and her views, but the House has already rejected a second referendum, a customs union, the meaningful vote and leaving without a deal. It is vital that the House comes forward with a proposal that it can support. What the House did support was an extension to article 50, and the Prime Minister is acting on that request and seeking to fulfil the will of the House. I am sure that if hon. Members feel there is a majority for another type of solution, they will come forward with those proposals.
Yesterday, I met some people of Christian faith from Cuba, who expressed concern over the Cuban Government’s attitude to church congregations. Christians represent some 20% of the population in Cuba, and the congregations are continuing to grow. They are now a significant religious minority and group in that country. These people also informed me that the Cuban Government have failed, and refused, to return church properties to Protestant Churches, which is totally unacceptable. Will the Leader of the House agree to a statement or a debate on this important matter?
The hon. Gentleman always raises matters of freedom of religion and he is absolutely right to do so. The situation that he raises around Cuba is very concerning. The UK does, of course, promote tolerance and acceptance of different faiths and beliefs within our own country, but it is also something that we want to see right around the world. We have Foreign Office questions on Tuesday 2 April and I encourage him to submit a question, or to seek an Adjournment debate, so that he can raise this matter directly with Ministers.
The knife angel, a sculpture created from confiscated knives, has again gone on display in Coventry. The sculpture is a stark reminder of the surging levels of knife crime that have infected our city and wrought such devastation on individuals, families and communities. More than anything else, the knife angel symbolises our city’s commitment to tackle violent crime and to encourage all those who carry knives to turn away from violence and aggression and towards peace and reconciliation. Will the Leader of the House join me in encouraging other towns and cities to offer to host the knife angel, and will she arrange a debate in Government time on knife crime and the impact that cuts to public services have had on our ability to tackle this increasing scourge?
The hon. Lady makes an excellent suggestion and challenge to other hon. Members to seek to have the knife angel hosted in their own areas. I know that there are many local police and crime commissioners who are really focused on resolving this appalling issue of the rise particularly in knife crime. She will be aware that the Government are introducing a £200 million youth endowment fund to try to prevent young people from being attracted to a life that takes them down that path of knife crime. The Government are doing everything that we possibly can to try to prevent this, and it is right that all hon. Members seek to do what they can to highlight their concerns about it.
May we have an urgent debate in Government time on the continuing problem regarding the awarding of personal independence payments to people who are disabled or who have long-term health conditions? I have experienced some appalling decisions in recent weeks in my constituency. The Government have promised to try to get a grip on this, but they still have not. May I have an urgent debate on the matter?
I am genuinely sorry to hear that the hon. Gentleman has had some difficult constituency cases. If he wants to raise a particular case with me, of course I will take it up with the Department on his behalf. He will be aware, however, that since personal independence payments were introduced in 2013, some 3.7 million decisions have been made—all made with the desire to help people to lead a more independent life and to be able to choose the kind of support they need. The total number of complaints received is less than 1% of all assessments, and nearly nine in every 10 PIP claimants are satisfied with their experience. We are constantly seeking to review and improve the system. If the hon. Gentleman has specific proposals to make, I encourage him to seek an Adjournment debate so that he can raise them with Ministers.
As a prefix to my planned question and further to the comments from my hon. Friend the Member for Kingston upon Hull North (Diana Johnson), I must tell the House that last week, in common with many other Members on both sides of this House, I received a message, among lots and lots of other messages, saying that my head should be chopped off. I apprehended the Prime Minister last Thursday evening and begged her to “dial down the hate”. I told her that it was in her power to do so. People are frightened not just in this place, but in the country as a whole. The Prime Minister must show some leadership; it is within her grasp. I implore the Leader of the House to pass on that message I have been contacted by many constituents over 75 concerned about the prospect of losing their free TV licence. As the Leader of the House knows, loneliness is a major issue, and for many people the television is, sadly, their only company. The retention of free TV licences for over-75s was in the Conservative manifesto in 2017, so may we have a debate or statement on the Government’s intentions?
First, it is appalling that the hon. Lady, or any other Member, has received such abuse. I can only repeat that I genuinely believe that all right hon. and hon. Members are seeking to do the best they can for their constituency and their country, and I pay tribute to everybody who works so hard for their constituency and country The hon. Lady raises a specific issue about free TV licences for the over-75s. I completely agree that often for people who are lonely the television, as well as a source of entertainment, is a link to the outside world and a way to find a friend in watching friendly programmes. I share her concern, therefore, and encourage her to seek a Westminster Hall or Back-Bench debate so that she can raise it directly with Ministers.
Will the Leader of the House join me in welcoming the decision by FirstGroup to buy five British-built Hitachi inter-city trains? It is great news for jobs in north-east England. Will she also facilitate a debate on the importance of every British-based company, including Transport for London, buying British-built trains?
I am delighted to join the hon. Gentleman in commending the decision to buy British. I am a big fan of doing that wherever possible. Obviously, in return for our being able to export our great British products, we also recognise the need for our own producers to be competitive, which is why we do not always buy British; nevertheless, I absolutely agree with the thrust of his proposal. I encourage him to seek an Adjournment debate to talk directly to Ministers about what more we can do to promote great British products.
I have raised previously with the Foreign Secretary the case of Luke Symons, a constituent of mine being held captive in Yemen. There is some hope that the International Committee of the Red Cross might be able to get him out, but he needs to get somewhere where there is a British embassy so that he can apply for a visa for his wife and bring his son back to the United Kingdom. Can we have a statement from the Foreign Office about this case? Barring that, can the Leader of the House pass on the message to her ministerial colleagues that that is what we need and that we need it swiftly?
I am grateful to the hon. Gentleman for raising his constituency case again in the Chamber—he is absolutely right to do so—and I am sure that my right hon. Friend the Foreign Secretary will be looking into it. If he would like to write to me with more details, I can take it up directly on his behalf, or he could raise it directly with Ministers at Foreign Office questions on 2 April.
Last night, the Prime Minister gave a deeply divisive and undignified speech trying to shirk her responsibility for prematurely triggering article 50 without a plan. In response, a petition to revoke article 50 has now been signed by more than 800,000 people, including 3,500 of my own constituents. When will the Government respect the intelligence of British people, admit we have the unilateral power to revoke article 50 to prevent further damage to our country and provide time to debate this crucial issue before 29 March?
It is the policy of the Government—and indeed of Parliament, which voted to trigger article 50 —to leave the European Union, in line with the result of the 2016 referendum. I say again to all hon. Members that I genuinely think that the Prime Minister’s proposal for the withdrawal agreement and future political declaration offers the compromise we want between leaving the EU in line with the democratic decision taken in 2016 and keeping a close and collaborative relationship with our EU friends and neighbours.
Last week, I met year 10 geography students from Myton School in Warwick. The Leader of the House will be aware that many young people across the country, and indeed the globe, are extremely concerned about climate change. Since I met them, we have had extreme weather events such as Cyclone Idai and flash floods in Indonesia, and reports from the head of the Environment Agency that within 25 years we could have severe water shortages here. I understand we had a debate a few weeks ago, but it was held during the recess week and was poorly attended, because we all had various other commitments. May I urge the Leader of the House to arrange another debate in good time so that we can explore the serious issues of climate change?
I pay tribute to the hon. Gentleman’s young constituents for their commitment to tackling global climate change; they are absolutely right to do so. I am sure that he will acknowledge the UK’s strong record and efforts to tackle global climate change, whereby we have reduced emissions faster than any other G7 nation. The latest figures show that we have reduced greenhouse gas emissions by 23% since 2010. In November 2016, we ratified the Paris agreement, which was the first truly global, legally binding agreement to tackle climate change. Of course there is much more that we should and can do, and I am sure that there will be further opportunities given the clear push from young people right across the country. I will take very seriously the hon. Gentleman’s request for a further debate on global climate change, and see what can be done.
I reckon that I have worked out where everything has gone wrong over the last couple of years in this Parliament. We have discovered today from the Foreign Secretary, and now from the Leader of the House, that a new and rather dangerous doctrine has been developed in the Government that, when there is a hung Parliament, it is the duty of MPs—broadly speaking—to support the Government, even if they do not think that it is a very good idea. That is the essence of it, isn’t it? Actually, it should be the other way around. In a hung Parliament, the Government must listen to the whole House I have a solution, and I think the Leader of the House can help. When Government Ministers are given their copy of the ministerial code of conduct, they should all also be given a copy of the 1936 book, “How to Win Friends and Influence People”. Clearly the Prime Minister did not have a copy last night—not least because it guarantees the reader that it will “increase your popularity” and: “Help you to win people to your way of thinking.” I am sure that if the Leader of the House could leave here later, pop over to the Prime Minister and give her a copy, she would manage to solve everything, because the key to the book is to always smile and never get cross.
Well, where to start? I may as well cut straight to the chase and say that I actually agree with the hon. Gentleman. I am not for one moment saying that all parliamentarians in a hung Parliament should do exactly as the Government say. I agree with the hon. Gentleman that people in a hung Parliament work together. I gave the example of 51 Government Bills having been introduced in this Session, 41 of which have already received Royal Assent. As hon. Members will know, that has happened as a result of great discussion, a huge number of concessions and close collaboration right across the House in order for the Government to achieve a consensus that the House would then support My point is not that parliamentarians have to do as the Government say at all, but that parliamentarians should be looking for what they can agree to. I am advocating the Prime Minister’s deal on the very clear grounds that it offers departure from the European Union, but a close and ongoing relationship with our EU friends and neighbours. That seems the right kind of compromise, which all hon. Members could get behind. Nevertheless, should we get to the point of introducing the withdrawal agreement Bill, which is the piece of legislation that would put into law the decision of the House, I have absolutely no doubt that there would be very close collaboration, and many concessions and discussions, in order to get the legislation through. So I agree with the hon. Gentleman. As Parliament’s voice in Government, it is my great pleasure that I often find myself pleading with Government Ministers to listen to the view of Parliament, and I will continue to do so.
And don’t be cross.
And smile.
And you, Mr Speaker.
And us all. The Leader of the House says that she is Parliament’s voice in Government. Although that is constitutionally the position she holds, she is certainly Government’s voice in Parliament. I think that we have always been very clear about that as well, and we acknowledge that part of her responsibilities.
I have a constituent who only found out after the death of her husband that she could actually get additional state pension based on his national insurance contributions. The Department for Work and Pensions had notified her husband but, for whatever reason, he had not taken action. This means that, although she is now claiming the additional money, she is limited to a maximum 12 months’ backdated claim. Rather than the outdated assumption that the man controls the household finances, can we have a Government statement confirming that the DWP will now always notify both husband and wife, and look at changing the law on the length of period for which such pensions can be backdated?
I certainly agree with the hon. Gentleman that it should never be assumed that one half of a partnership controls the finances for the other. He raises an important constituency case, and I encourage him to write to me so that I can take the matter up with the Department on his behalf.
I ask again: when will the Timpson review of exclusions be published? Last week, I joked with the Leader of the House about how soon it would be, but it is actually no joking matter. When there are undeniable links between exclusions and youth violence, it is crucial that we get this report and that it is published now.
I completely agree, and I again pay tribute to the hon. Lady for her commitment to the issue. I will ask again when the review can be published, and I share her desire for it to be brought forward urgently. She may have seen this morning the suggestion of the Secretary of State for Education that exclusions are not necessarily directly the major cause of some of the knife crime problems that we have seen, and that truancy may be an even bigger issue. It is vital that we look across the piece at what is causing this issue, and that we seek to put measures in place. The hon. Lady is right to chase the report, and I will see if I can do more to push for its publication.
I am afraid to admit that I have been glancing at the internet during these exchanges, and I have to tell the Leader of the House that the website for the Brexit petition to revoke article 50 has now crashed. I wonder whether she can help me to help more of my constituents sign the petition, which had reached 800,000 signatures the last time I looked.
I was made aware this morning that there were some technical problems with the Petitions Committee website that people are working quickly to restore, so I can reassure the hon. Lady that the website will be back up and running as soon as possible. I can also assure her that, should the petition reach more than 17.4 million signatures, there would be a very clear case for taking action. However, it is absolutely right that people have the opportunity to put their views, which can then spark yet another Brexit debate.
My constituent Paul McDonald suffers from macular degeneration, and was given the opportunity by a private company, the London Eye Hospital, to have a new treatment, which the hospital claimed would improve his condition. Having got himself into considerable debt, he has now unfortunately found that his eyesight has become worse as a result of the treatment. The company has gone into administration, and it turns out that dozens of other people feel that they have been mis-sold this treatment. Can we have a debate on what we can do to avoid a repetition of the situation and get some justice for the people affected?
The hon. Gentleman raises a really serious issue. I am very sorry to hear about the problems that his constituent has had. Health questions are on 26 March, and I encourage him to raise the matter directly with Ministers then.
Can we have a debate on the urgent need to bring new hi-tech industries and highly skilled jobs to areas such as the Black Country that have lost their traditional industries? This would enable me to set out the case to develop in Dudley not just a new institute of technology, but a hi-tech campus to provide more apprenticeships, degrees and better-paid, secure jobs in areas such as low-carbon technologies, advanced manufacturing, digital technologies, autonomous vehicles, very light rail, computing and software development.
I commend the hon. Gentleman for standing up for Dudley, as he absolutely would do. As part of the UK’s industrial strategy, we have already agreed 10 sector deals with a range of industries including the aerospace, construction and offshore wind sectors. These deals bring together Government, industry and researchers to ensure that we can build on our success and exploit future opportunities. The Government are doing their bit, sector by sector, to promote the huge opportunities that lie ahead, and I encourage the hon. Gentleman to seek an Adjournment debate so that he can talk to Ministers about the opportunities for Dudley.
The primary 7 pupils at Prestonpans Primary School in East Lothian, where I used to teach, had a debate on Brexit, and it was very friendly and goal-oriented. Indeed, one of the children undertook to write to the Prime Minister, and I know that in due course he will get a response. Given their attitude to that debate, and given the comments by my hon. Friend the Member for Warwick and Leamington (Matt Western) about what young people can do with regard to climate change, could we have an urgent debate on what we can learn from our young people?
I would absolutely welcome such a debate. There is a huge amount we can learn from young people, right across a whole range of topics. I pay tribute to the school pupils in his constituency for their commitment to talking about Brexit. In fact, there was also a debate about Brexit in my daughter’s school, where she was required to stand up for a second referendum. She rang me for some suggestions about what she could say, which I was of course very happy to provide. Many hon. and right hon. Members have provided me with plenty of ammunition in support of that. I do take seriously what the hon. Gentleman says, but in the meantime he might like to seek a Back-Bench debate, because I am sure that lots of hon. Members would like to commend the work done by young people in this country.
Before I ask the Leader of the House a question, Mr Speaker, may I put on the public record how often I am told by the people of 30 nations with whom I often interact how much they admire our opportunity to have a Speaker who stands up for Back Benchers, who defends the standards of Parliament, and who represents the best of British way of doing things with fairness, openness and transparency? Thank you, Mr Speaker.
Thank you.
Scotland is currently consulting on non-time-limited guidance for clinicians to assess access to terminal illness benefits. Can we have more sitting Fridays in order to debate my private Member’s Bill that looks at amending the current time-limited access to terminal illness benefits to bring it into line with Scotland’s proposed, more compassionate guidance?
I certainly commend the hon. Lady for raising this very important issue. She will be aware that the decision to ensure that people did not have to go through constant assessments when they have a terminal illness was based entirely on compassion. She will also be aware that we have Health and Social Care questions on Tuesday 26 March, and I would encourage her to raise her specific point then.
I wonder, Mr Speaker, whether you can imagine the scene at the great Scottish home of the UK’s nuclear deterrent, Faslane naval base, on 29 April 1969, when a crew of submariners slipped out in one of the Barrow-built R-class submarines and thus began Operation Relentless, which has, 24 hours a day, for every single minute, protected the UK from the threat of nuclear blackmail. As the Leader of the House will know, because I know she can do her maths, on 29 April it will be 50 years to the day since Operation Relentless began. Does she not think that there should be a debate in Government time to commemorate this extraordinary achievement? No matter what one thinks of the nuclear deterrent, I know that Members across the House will want to thank all those involved, from the shipwrights across the United Kingdom who built the submarines to the submariners who have served in them. I have already made a conditionally successful application to the Backbench Business Committee. However, the scale of this achievement surely deserves Government time, given the amount of attention that the Navy is giving to this issue over the coming weeks and months.
I am so pleased that the hon. Gentleman has raised this very significant milestone and also given us the opportunity to thank all those who have served, for coming up to 50 years, in protecting our United Kingdom around the world from, as he says, the threat of nuclear blackmail. When I was 13, it was the risk of a nuclear war that made me decide that I was going to become a Member of Parliament, so this very issue has been with me for an extremely long time—longer than I care to think of. I will certainly take his request very seriously and see whether we can find Government time, but I am very glad to hear that he has already got his request in to the Backbench Business Committee.
People in my constituency who formerly worked at the Hoover factory in Merthyr Tydfil are rightly concerned about their reduced pension fund. Given that the Government removed a significant surplus from this pension fund in the past, does the Leader of the House agree that they have a responsibility to support such funds in times of deficit too? Can we have a debate on this issue and the wider issues arising from the Government removing large surpluses from pension pots?
The hon. Gentleman raises a very important issue for his constituency. I know that the profit share that has been agreed with Government in different pension pots has regularly been an issue of concern for Members. I would encourage him to perhaps seek an Adjournment debate so that he can raise his specific concerns directly with Ministers.
In a recent answer to my hon. Friend the Member for Birmingham, Northfield (Richard Burden), a Minister of State at the Foreign Office told him that the UK Government did not normally disclose how they intend to vote ahead of United Nations Human Rights Council meetings. However, this morning, writing in the Jewish Chronicle, the Foreign Secretary has confirmed that they intend to vote against all proposals under item No. 7 relating to the occupied Palestinian territories. Does the Leader of the House agree that if Ministers are telling Members of this House that the Government do not disclose their voting intentions, it is therefore completely inappropriate for them to announce those intentions elsewhere? Will she help to secure an urgent statement tomorrow from the Foreign Office on the Government’s voting intentions at this crucial meeting?
I would certainly agree that it is always preferable for Ministers to come to this House, as is the convention, to make any important statements in the Chamber. I am not aware of the specific circumstances of what the hon. Lady mentions, so I cannot comment on that. However, we have Foreign Office questions on 2 April, and she could certainly raise the matter there, or perhaps seek an urgent question if it is something of a more urgent nature.
I think it is in the interests of the hon. Member for Glasgow East (David Linden) that his Chief Whip be called before him. I call Mr Patrick Grady.
Thank you, Mr Speaker. I can assure you and the hon. Member for Rhondda (Chris Bryant) that Whips always smile and are never cross I want to press the Leader of the House on the issue of the House sitting on the Friday, and potentially the Saturday, of next week. I found it quite astonishing that there had never been a plan for us to sit on what was supposed to have been Brexit day. Given the possibility that we could have crashed out at 11 o’clock next Friday, it is astonishing to think that we might have to wait until the following Monday to respond to that. So are there contingency plans in place? This is particularly important for the staff who help to keep this place running. That is also true of the Easter recess. I am quite happy to sleep in the Lobby if need be to get this mess sorted out, but it is simply unfair to keep the Clerks, the security and catering staff, and everybody else who makes this place work waiting to find out whether there is going to be an Easter recess. When will we get confirmation of these dates, if at all?
I totally share the hon. Gentleman’s desire to make sure that people are given as much notice as possible, but equally to make sure that we do not stand people up unnecessarily. Clearly, there is a fine balance between me announcing that we are going to sit 24/7 for the next three months, just in case, versus me coming back with an announcement as soon as possible should it be necessary. Of course, there would be usual-channels discussions should it be necessary to sit, for example, next Friday. However, I do take his point very seriously. We always seek to ensure that we take full account of the impact on the staff of this place—those who support Members of Parliament but also those who support the smooth running of the House.
I hope that the Leader of the House can help me with a debate on the question of Government consultations. The Home Office issued a consultation on air rifle misuse in October 2017. It closed in February 2018. In the answer to a parliamentary question from me this week, I found that there is still no date for the publication of a Government response to that consultation. I have constituents who have lost people due to the misuse of airguns, and they just want to know what is the Government’s view. Can we have a debate on what is an acceptable period between the end of a consultation to the Government responding to it?
I am very sympathetic to the right hon. Gentleman’s request. If he wants to write to me after the business question, I can ask the Department on his behalf. He will be aware that we have Home Office questions on 1 April, and he could equally raise it then, should he wish to do so.
Can we have a statement from the Government on what “in due course” means? Since January, the Government have been supposed to conclude their review into the provision of parental leave for parents of premature and sick babies. I have lodged numerous written questions, including pursuant questions, and the Under-Secretary of State for Business, Energy and Industrial Strategy, the hon. Member for Rochester and Strood (Kelly Tolhurst), just keeps saying “in due course”. Is that “in due course” as in, “I’ll go and cut the grass in due course”, or as in, “We’ll have a meaningful vote in due course”? This is a serious point. Today, babies will be born prematurely, and parents are still not getting the support they need. Can the Leader of the House arrange for a statement on what “in due course” means and ensure that we support the parents of premature and sick babies?
I know that the hon. Gentleman has a deep personal interest in this matter. I completely understand that he would like a specific date. I can say to him, from the heart, that these things can be quite complicated. When we are seeking to change a law or give a different dispensation, there are often quite a lot of consequential impacts that require consultation, further research and so on. When Ministers say “in due course”, they genuinely mean as soon as all the various aspects can be finalised. Often it is impossible to give a specific date, but if he wants to write to me, I can certainly chase the Department on his behalf.
On a point of order, Mr Speaker. I seek your advice. The Government are supposed to be tackling violence with a public health approach, so I was astonished when my question to the Secretary of State for Health and Social Care asking what progress his Department has made on the implementation of a public health approach to tackling violence was transferred to the Home Office for a written response. My question was genuinely meant for the Secretary of State for Health and Social Care, as I am keen to know whether he endorses a public health approach and what action his Department is taking. The public health approach can be successful only if it is genuinely adopted across the whole of Government.
The hon. Lady has done me the great courtesy of telling me in advance that she wished to raise that matter on a point of order. The short answer, but it is not the only answer, is that it is for Government to decide the Minister and Department answering a question—that is to say, the matter of transfer from one Department to another is within the exclusive cognisance of Ministers. That said, if it is the clear and explicit wish of the hon. Lady to explore the issue from the vantage point that she has described, I think it would be helpful if the Department of Health and Social Care respected that The hon. Lady may find that a direct approach to a Health Minister—a private chat over a cup of tea or on the telephone—would help. If that does not avail her, or if she prefers another approach, I suggest that she goes to the Table Office to explore the options, where the brilliant and dedicated staff will seek to help her. She will not be surprised to know that this is not an unprecedented situation—there have been many such examples over the years—but if she follows my usual advice, which is to persist, I think she will find a way through the thicket.
Further to that point of order, Mr Speaker. Over two weeks ago at Prime Minister’s questions, the Prime Minister said that she would be hosting an emergency summit in Downing Street on knife crime “in the coming days”. As far as I am aware, no invitations have gone out and no summit has been held. Have you been given any indication of a statement to the House about the Prime Minister’s intention to hold such a summit on the urgent and crucial issue of tackling knife crime?
I have received no indication that a Minister plans to make a statement on the matter. I note what the hon. Lady says about a past prime ministerial commitment. To be fair, the Prime Minister has many matters on which to focus at the moment, and I cannot say whether the organisation of this event is in train or not. I note that the hon. Lady is indefatigable and remorseless in pursuit of this subject, which is absolutely right and proper, and she will have opportunities to air the issue in the Chamber in the days to come, especially if she is dissatisfied that the event that she anticipated has not yet been arranged.
On a point of order, Mr Speaker. I wonder whether you have been approached about the security arrangements for Members of Parliament—something I know you take very seriously, as does the Chairman of Ways and Means, who is in the Chamber—following the Prime Minister’s remarks last night, when she seemed to set Parliament against the people on the issues of Brexit. I have noticed a more belligerent tone in some of my communications since last night, and I am sure that other Members of Parliament are starting to experience the same issue. Given the darkening mood that has been created by what the Prime Minister said last night, is there anything else we should be doing to ensure that we take care of our own security?
I am grateful to the hon. Gentleman for his point of order. I will make two points. First, if he has concerns of either a personal or wider nature, it is open to him to approach the parliamentary security director, Eric Hepburn, who will be well known to colleagues; indeed, I would encourage him to do so. Secondly, wholly unrelated to any comment or statement by any Minister or other parliamentarian, I have today a long-arranged meeting with security advisers. That meeting will take place very shortly, and if it is a service to the hon. Gentleman, I will relay the concern that he has expressed and some of the concerns that other Members from across the House have articulated about this matter. If there is a further or better particular that I have to share with the House, I will say so. Otherwise, if he wishes to approach me again next week to seek details of the substance and outcome of my meeting, I will be very happy, as is proper and appropriate, to brief him. I hope that that is helpful.
On a point of order, Mr Speaker. I do not know whether many people in the Chamber are aware, but I am sure you are, that at this moment the 50th Special Olympics are taking place in Abu Dhabi. Shannon McGhee and Jamie Kearns, two former pupils of Kilpatrick School in West Dunbartonshire, where my younger brother went, are part of the UK national team. Can you advise me how we can highlight to not only Shannon and Jamie but the entire team how fantastic we think their endeavours are? More importantly, how can we highlight to the state broadcaster and other broadcasters that receive public funding that their coverage of a truly elite sporting activity is woefully inadequate?
The truth of the matter, as I think the hon. Gentleman knows, is that he has achieved his objective. As an experienced parliamentarian, he has registered his point with skill, eloquence and panache.
The Chair of the Housing, Communities and Local Government Committee, the hon. Member for Sheffield South East (Mr Betts), will speak on his subject for up to 10 minutes, during which I remind the House that no interventions may be taken. At the conclusion of his statement, the Chair will call Members to put questions on the subject of the statement and call the hon. Gentleman to respond to those in turn. Members can expect to be called only once. Interventions should be questions and should be brief. Those on the Front Bench may take part in questioning.
I thank the Backbench Business Committee for making time for this statement. Last Tuesday, the Housing, Communities and Local Government Committee published our 12th report of this Session, following a six-month inquiry into leasehold reform. I thank all the members of the Committee, who agreed the report unanimously; several of them are in their places today. I particularly thank Nick Taylor, our Committee specialist, for his excellent work on this technically challenging subject We are grateful in particular for the work over many years of the all-party group on leasehold and commonhold reform, which has helped to highlight the multitude of issues of concern among leaseholders. It was extremely helpful to have public evidence from the joint chairs of the group, the hon. Member for Worthing West (Sir Peter Bottomley), who I see in his place, and my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick). I also see in his place my hon. Friend the Member for Ellesmere Port and Neston (Justin Madders). We also had written evidence from my hon. Friend the Member for Weaver Vale (Mike Amesbury), who during his time on the Committee strongly advocated such an inquiry—he is also in his place—as well as from my hon. Friends the Members for Brent North (Barry Gardiner), for Feltham and Heston (Seema Malhotra), and for Manchester Central (Lucy Powell), and the hon. Member for Pendle (Andrew Stephenson) The Committee has never undertaken an inquiry that has had such an overwhelming response from individual members of the public. We received over 700 written submissions, mostly from leaseholders who wanted to tell us about their personal experiences. It is clear there is a great deal of dissatisfaction: onerous ground rent terms; high and opaque service charges; unfair and excessive permission charges; alleged mis-selling of leasehold properties by developers; imbalanced dispute mechanisms; and unreasonable costs to enfranchise or extend leases. In the worst cases, people have been left trapped in unsellable homes. More common are leaseholders with opaque service charges and poor levels of maintenance who have no reasonable means to challenge or query how their buildings are being managed. The Committee concluded that “too often leaseholders, particularly in new-build properties, have been treated by developers, freeholders and managing agents, not as homeowners or customers, but as a source of steady profit.” At the very start of our inquiry into leasehold reform, we invited 50 leaseholders to meet us in Parliament to talk about the issues that most concerned them. We listened carefully to their concerns, and when at the end of the session we asked them what they wanted us to recommend in our final report, they responded nearly unanimously, “Abolish leasehold”. We have listened. Leasehold is an inappropriate tenure for houses, and we support the Government’s proposals to prohibit leasehold development of new build houses. With regard to flats, we are unconvinced that professional freeholders provide a significantly higher level of service than what could be provided by leaseholders themselves. There is no reason why the vast majority could not be held in commonhold. Only the most complex mixed use developments and some retirement properties may continue to benefit from some form of leasehold ownership. We call on the Government to ensure that commonhold becomes a primary model of ownership of flats in England and Wales, as it is in many other countries, and to create incentives—and remove the disincentives—for developers and freeholders to ensure that this happens It is right to consider tenure for the future, but much of our evidence was from existing leaseholders who want their concerns to be addressed now. During our inquiry, we heard several accusations from leaseholders, particularly of houses, that they had been mis-sold their properties. A particular concern of a substantial number relates to their accusing developers of reneging on promises made by the sales teams to allow leaseholders to purchase their freeholds at an agreed price after two years. Leaseholders told us their freeholds had been sold on to third-party investors who are not willing to allow leaseholders to purchase their freeholds at the same price as previously offered. One leaseholder told us that the price of purchasing her freehold had increased from £3,000 to £13,000, and another that it had increased from £5,000 to £40,000 Developers denied they had deliberately misled leaseholders, but the number of near-identical stories reflects a serious cross-market failure. We have called on the Competition and Markets Authority to investigate mis-selling in the leasehold sector and to make recommendations for compensation. We know the Secretary of State for Housing, Communities and Local Government has already called on the CMA to do this, and it has refused. We hope our call will act as pressure on the CMA finally to act in the interests of leaseholders It was concerning to hear several reports from leaseholders that they had been advised, incentivised or required by the developer to use a specific conveyancing solicitor who subsequently did not advise them of onerous terms in their leases. We heard that developers had offered free carpets, free lawns, discounts or other financial incentives to use a preferred solicitor. Leaseholders were told that their sale would fall through if they did not complete within 28 days, and that only the solicitor recommended by the developer could be certain to hit the deadline. Consumers must be able to access independent and reliable legal advice when purchasing a property, so we have called on the Government to prohibit the offering of financial incentives to persuade a customer to use a particular solicitor. Concerns were raised about onerous ground rents. Ground rents bear no relation to the level of maintenance or the quality of service provided to leaseholders; that is the function of the service charge. Some developers had imposed 10 to 15-year doubling ground rent terms in the leases of new build flats and houses. Taylor Wimpey has apologised and set up a remediation scheme, albeit with limitations, but others have not. Redrow told us that it had introduced 10-year doubling ground rents on 347 properties, with an average starting ground rent of £400 per annum, which would rise to £12,800 in the 50th year, but it has no plans to remedy these leases There is a growing trend for mortgage lenders to refuse to lend on leasehold properties where the ground rent exceeds 0.1% of the property or will do so. The options for leaseholders with onerous ground rents are limited. We are not convinced by voluntary offers, so what more can be done? One option is to use legislation to amend existing leases. The Government told us initially that they were not able to use legislation in these circumstances. The Secretary of State said that “the nature of contract law means legislation cannot change the terms of leases that have already been signed.” However, we found that it would be legally possible for the Government to introduce legislation to remove onerous ground rents in existing leases and retrospective legislation could be compliant with human rights law. Indeed, the Government propose to reduce the premium payable to enfranchise, which will in effect buy freeholders out of a contractual income stream at a discount. There is little difference in principle between altering the terms of enfranchisement and altering ground rents, and both are likely to be equally justifiable in human rights terms. Freeholders would probably need to be compensated, but that compensation need not necessarily be at full value. Our view is that existing ground rents should be limited to 0.1% of the present value of a property up to a maximum of £250 a year On future leases, the Government initially said that they would require those to be set at a peppercorn or zero financial value, but they have since proposed making £10 per annum a standard cap. It is unclear what value there is for the leaseholder or freeholder in requiring a ground rent of £10. We therefore recommend that the Government revert to their original plan to require ground rents on newly established leases to be set at a peppercorn or zero financial value Although it is fair that freeholders should be able to pass on reasonable costs arising from a change initiated by a leaseholder, many of the permission fees we heard about were plainly excessive and exploitative. Charges such as £3,500 for permission to build a conservatory or making a charge to fit a new doorbell are clearly ridiculous. We have called for permission fees to be limited to the true administrative costs incurred by freeholders. The Government should require this in the lease of new build properties, and legislation should be introduced to restrict such fees in existing leases Furthermore, the growing practice of imposing permission fees in the deeds of new build freehold properties and enfranchised former leasehold properties is an unjustified intrusion on homeowners that many campaigners have rightly referred to as “fleecehold”. We have made recommendations to deal with “fleecehold”, including that the Government should require that permission fees be only ever included in the deeds of freehold properties where they are reasonable and absolutely necessary, although we noted that we could not think of any circumstances in which this would be the case. We have also called on the Competition and Markets Authority to exercise its powers under section 130A of the Enterprise Act 2002 to indicate its view about whether onerous leasehold terms constitute unfair terms and would therefore be unenforceable. Where leaseholders have paid unreasonable fees or ground rents over the course of their leases so far, they should have them refunded by freeholders with interest Our report has made many other recommendations, and we welcome in particular the work being done by the Law Commission on a number of matters, such as enfranchisement, commonhold and other matters.
rose—
No, no.
We feel it is necessary not simply that we have a number of individual recommendations, but that the Government now call on, invite and fund the Law Commission to conduct a more comprehensive review of leasehold legislation as a whole. We have made many other recommendations that I do not have time to go into today, but we look forward to the Government response to our report. Given the weight of evidence we have had from so many individual people—our constituents—up and down the country, we urge Ministers to take our recommendations seriously.
May I say that I own a leasehold flat? In a few years’ time, I may own another one, but I have not had any problems The Chair of the Select Committee, and his colleagues and advisers, deserve enormous thanks and congratulations. In just three months, they had the innovation of the roundtable—I recommend the conclusion of that roundtable to the BBC, and others, who do not yet seem to have covered the detail of the report The hon. Gentleman picked up on issues raised by the National Leasehold Campaign, as well as the knowledge of Bob Bessell, a trustee of the Leasehold Knowledge Partnership, who has developed more than 1,500 retirement properties with no ground rents. He knows, as do we, that ground rents pay for nothing that is of benefit to those in their homes The report’s suggestion of lease-rental is good. Leaseholders should not think that they actually own anything, because they do not. They are effectively tenants, and as we saw with the Grenfell-style cladding, they were supposedly left carrying the cost of replacing that cladding, which is not good enough On behalf of the all-party group on leasehold and commonhold reform, I welcome the campaign to ensure that costs are made equal and that freeholders are not able to put the costs of unsuccessful legal actions on to leaseholders, who then have to pay even though they won a dispute It is important that all recommendations in the report are debated in full, and if we have more such reports, the work of those who have campaigned on this issue, particularly the hon. Members for Ellesmere Port and Neston (Justin Madders) and for Poplar and Limehouse (Jim Fitzpatrick)—he is currently in a meeting about leaseholders, but otherwise he would have spoken today—will be carried through to the benefit of leaseholders.
The point about the costs of legal action not being recoverable from leaseholders is made in our report, and I welcome the idea of a longer debate on that issue—perhaps once the Government have published their response, so that we can take that into account. We ought to pursue the idea of lease-rental more clearly, because people do not wholly own their properties in the way they think they do.
As my hon. Friend knows, I am particularly concerned about older people who have been somewhat duped into these schemes. Does he agree that the Competition and Markets Authority could quickly consider that issue and deal with problems in the sheltered accommodation sector?
Yes. We called for an investigation into mis-selling, as did the Government. Let us hope that, between us, we get that done, particularly for older people who may not have understood some of the difficult complications with those sorts of properties.
I congratulate the hon. Gentleman—I shall call him my hon. Friend—on his chairmanship of the Committee and on steering us towards this excellent report, in which I was pleased to participate. One point that he did not mention, given the time available to him, was the scandal of companies such as Bellway that sell the freeholds of properties to financial companies two years after they built them, without even notifying the leaseholders. Will he urge the Government to close the legal loophole that allows companies to sell properties to subsidiaries or other organisations without even notifying leaseholders and to ensure that leaseholders can buy the freehold at the same price that would be paid by any subsidiary?
Absolutely. It is a complete scandal, and a number of developers have blatantly admitted that they sold on the property and did not tell the leaseholders what was being done. Ultimately, banning new houses from being built as leaseholds solves the problem, but immediately there ought to be a right of first refusal for leaseholders to buy their freehold at a clear and regulated price. The Law Commission is working on that issue, and we support that.
On behalf of the National Leasehold Campaign, I congratulate the Chair of the Select Committee and its members on an excellent, comprehensive report. There is, I think, a sense of vindication among all those who have campaigned on this issue, not least myself, the National Leasehold Campaign, the hon. Member for Worthing West (Sir Peter Bottomley) and my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick), because the Committee has picked up on all the issues that were of great concern to us. When considering the report, I hope the Government will note that the Leasehold Reform Bill is still on the books, which would make the process of enfranchisement simple and easy. Did the Committee come to a view on the agreements that have been reached between some developers and leaseholders for changing the terms of their lease from ground rent doubling to RPI?
We did consider that, and we said that although such voluntary agreements might be a step forward, they were not sufficient and they were not as good as our proposals to restrict leases on existing properties to 0.1% of the value, or £250. Legislation would overturn the current arrangement, and provide a better one for leaseholders.
The scandal of new houses being sold on leases, often to first-time buyers, is present in my constituency in Dunstable and Leighton Buzzard, and involves builders such as Galliford Try, which trades as Linden Homes, Taylor Woodrow and Persimmon. I am concerned about how we get speedy and affordable redress for people caught in that situation, including those Taylor Woodrow victims who are not the original purchasers and to whom Taylor Woodrow are offering nothing. The report states that the Law Commission is not due to provide its final report until later in 2019, and the Committee recommends implementation of these measures within 12 months. That cannot come a day too soon. This scandal should never have been allowed to happen, and I say to my good friend the Minister that we need urgent action please.
The word “scandal” is absolutely right to describe the way some of these developers have behaved. Hopefully action will follow quickly from the Law Commission’s report, and the Committee will keep an eye on that and press for action, as I am sure will other hon. Members. We must keep reminding ourselves that the companies who have done this are hardly hard up. In the last financial year, Taylor Woodrow made profits of £800 million and Persimmon of £1 billion. Those companies are not relying on that money to keep themselves afloat.
I apologise, Mr Deputy Speaker, for standing up too soon—just when I begin to think I know what I am doing, I realise that I really do not I congratulate the Chair of the Select Committee and its members on an excellent report, as well as the all-party group on leasehold and commonhold reform, and the work of my hon. Friend the Member for Ellesmere Port and Neston (Justin Madders). They have managed to deliver cross-party consensus, and the need for reform is clear. Does the Chair of the Committee agree that following the Law Commission’s detailed work into enfranchisement, it is important that a simple formula is set for leaseholders to buy the freehold of their home, based either on a multiple of ground rent, or on a percentage of the capital value of the property?
We need something simple, and the Law Commission has been asked to consider that issue because something as simple as a multiple of ground rent might not be fair. The freeholders who would get the biggest benefit from a multiple of ground rent will be those who made the largest ground rent charges, and it would be perverse if those who behaved the worst were to benefit in that way. We want the Law Commission’s report as quickly as possible and a formula that is as simple as possible but also fair.
I, too, thank the Select Committee for its report, which is long overdue. My constituency has a particular issue with elderly constituents who have moved into blocks for independent living and found that their assets have depreciated hugely. They are not being managed or looked after, but the service charges keep going up, and people cannot afford to leave. They are trapped. Something needs to be done to help those vulnerable constituents, and it seems to me that we need to open up the market for management service companies. Did the Committee consider whether it would be possible to allow leaseholders to set up their own community interest company and take on those responsibilities? Leaseholders would not rip themselves off in the way that they are currently ripped off by some of these unscrupulous companies.
There are circumstances where leaseholders can do that—ultimately, they could move to a form of commonhold, although that requires substantial agreement among themselves, and many elderly leaseholders might not want to go down that road without lots of explanation and help. One of our concerns was that there is not much help or publicity about that process, and that issue could be looked at. Service charges are often terribly opaque, and proper information is not provided. The right to challenge is not explained, and challenge through a tribunal is difficult. Another thing that would help is a simpler housing court system, which we hear the Government are going to introduce. The quicker they do that, the better.
I congratulate my hon. Friend and the Select Committee on the report, which is incredibly hard-hitting. My constituents, such as Pamela Rose Canales and other Camellia House residents who contributed evidence, greatly appreciate it. I believe the report is a game-changer. This issue has been bubbling away in this House, and we now have a real opportunity to fundamentally review and change legislation in this area. May I pick up on three very brief recommendations he has made, and ask how quickly he thinks they could be taken forward The first relates to the prevention of the ability of landlords to recoup their legal fees from those against whom they lose their case. Secondly, in my experience, paying the service charge has not been the issue. People are happy to pay a fair service charge. As my hon. Friend says, the issue is the lack of transparency and justification, and the unpredictable nature of additional charges that can just appear throughout the year. Perhaps with the housing court that he mentioned, changes could come in quickly Finally, how quickly could the Law Commission be asked by the Government to undertake a comprehensive review, bearing in mind that it could take 12 to 18 months? We want the legislative changes to be introduced as quickly as possible.
On the first point, if a leaseholder at a tribunal asks at the beginning for a ruling that, if they win, costs cannot be passed on to the freeholder, the tribunal can so rule. The problem is that many leaseholders do not know about that requirement. The Government could do an awful lot immediately to publicise that Secondly, on service charges, we recommend that a standard format should be brought in, so that all leaseholders know what to expect and all information is given to them in a proper manner. The Government could publish guidance without having to wait for primary legislation. We hope that they will look at doing that very quickly On the Law Commission, I do not know how long it would take it to report, but the Government could make an immediate decision to ask it to produce a report. However, the Law Commission made it very clear to us that it currently does not have the resources in its budget to do that. It would need the Government to offer, and provide, sufficient funding.
The whole system of leasehold and ground rent is a racket, and it has gone on for centuries. It was invented by aristocrats who had stolen all the land from the monasteries in the 16th and 17th centuries. It is a scandal that we, and successive generations of politicians, have continued to allow the thing to exist. Funnily enough, when it came to a moment when there was a dire shortage of housing, the house builders saw an opportunity. It is no wonder that we have ended up with the position we are in at the moment. Would it not just be simpler to scrap the whole system?
I am tempted to say yes. What we said in the report was that we need to move to a whole new approach, where commonhold becomes the default option for flats, we abolish leasehold for houses, and if we put the sorts of restrictions on ground rents and permission fees that we have been talking about, there will not, ultimately, be any incentive for freeholders and that will drive it out of the market. I think the issue is twofold: stopping it on new properties and removing the incentive for freeholders, so their income streams, which are wrongly obtained now, will not be available in future.
I congratulate my hon. Friend and the Select Committee on an excellent report. Like many other colleagues here today, I have many constituents who are affected by this terrible scandal. The Committee rightly addresses how people can get redress and compensation. Clearly, there is still a lot of uncertainty. For those who have already been hit, how they get redress and compensation is a big issue. During his presentation, my hon. Friend said that he does not think retrospective legislation should in any way conflict with human rights legislation. Can he say a bit more about that?
We took evidence on that. There are caveats and conditions on human rights legislation. If there is a general good to be obtained, that can outweigh the particular interest of private owners of property. The Government have already got around that on enfranchisement. They have asked the Law Commission to recommend a simple enfranchisement that could mean that the freeholder receives less compensation when the leaseholder enfranchises. In that case, the Government are already considering reducing the value of enfranchisement to freeholders. That is no different to a recommendation to reduce the value of ground rents to freeholders in principle. That probably needs further work, but we had advice that it is possible. There will be a requirement for some compensation, but it need not be full-value compensation.
I, too, would like to thank the Chair and his Committee, my hon. Friend the Member for Ellesmere Port and Neston (Justin Madders), the hon. Member for Worthing West (Sir Peter Bottomley) and my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick) who have raised this issue consistently in this House, certainly since I have been here The Leasehold Knowledge Partnership has been very helpful to leaseholders and to us on the legal issues. I am really pleased that the report says, rightly, that the balance of power is weighted against the leaseholder. The hon. Member for Rhondda (Chris Bryant) said that this is the modern equivalent of the racket that followed the dissolution of the monasteries. Does the Chair not agree that this is indeed a modern racket, whereby developers, solicitors and financiers, many of them offshore, are deliberately running a racket and organising conferences to share knowledge on how to rip off leaseholders?
Yes. I too thank the Leasehold Knowledge Partnership for its work. My hon. Friend is absolutely right. Houses are being mis-sold in the first place. Then, when people are in a leasehold situation, they are being charged ridiculous amounts for permission fees for things that should be done anyway without the requirement of the freeholder to say yes. Service charges are put in for services that are often not delivered. Freeholders are making money out of that. We heard examples of freeholders contracting for insurance on the property and taking a percentage contribution out of the money they paid over. Those things are completely wrong. The sooner we can change the system, the better.
I would like to put on record my thanks to the Chair of the Select Committee, every Select Committee member, the all-party group and the campaign. Many of my constituents in the Northwich and Runcorn parts of my constituency have been affected, as people have rightly said, by this mis-selling scandal affecting leaseholders. What more can the Government and the Select Committee do to press the Competition and Markets Authority to investigate and recommend levels of compensation? We need action now.
Absolutely right. I will take that up, and I think we can write directly to the CMA as well. Obviously, the Government will get a copy of the report and will respond. We will make sure that the CMA gets a copy as well and responds to it. This is a scandal. Many people’s lives are being blighted by this situation. We need to do everything we can as quickly as we can to rectify it.
I, too, welcome the report. It is a national scandal—that is clear. These people knew exactly what they were doing. These have been sold as financial products. People are making a lot of money out of this and they are preying on many first-time buyers who are keen to get into their homes. We have already heard about the lawyers who were recommended at a discount. People were hoodwinked. They now tell me that it is difficult to sell their homes. They have told me that they do not feel that they actually own their home, but that somebody else owns it. I recognise that it is difficult when people have signed contracts, but that does not mean that we should not do something about it. We need to sort out this scandal for existing homeowners.
Absolutely. We have said that we think there ought to be retrospective changes to the permission charges and the ground rents where they are clearly onerous. The Competition and Markets Authority ought to look at whether those contracts are enforceable, because they are, in many cases, unreasonable. There are two ways we can and should approach that. I am pleased to see that the Minister has sat through this statement on the Government Front Bench, because in the end she is the one who is going to have to deliver a lot of these changes. I think she is hearing very clearly from across the House that there is a real demand that this whole matter be addressed properly by the Government and that they implement the Committee’s recommendations.
It has been an honour to serve on the Select Committee, and may I say how well chaired it is? I thank the APPG for its contribution, and indeed all those who have campaigned on the matter for so long. I was the victim of leasehold many years ago, when I found myself in the straitjacket of the costs of the freeholders. What was clear from the evidence we received was just how far-reaching the problem is. What has been going on is a national scam—the words “racket” and “scandal” have also been used—so we absolutely must get to grips with it as quickly as possible Over the past two years, buyers on one of the recently built estates in my constituency have been told by the salespeople that they would not have to pay as much council tax as others because they would be paying a separate charge for their verges to be looked after. Local authorities now have a responsibility to address that issue with those estates.
We made it clear right at the beginning of our report that there should be a clear explanation from the seller of what extra charges there might be for the future maintenance of areas of open space that have not been taken over by the council. If they are to be managed by a private company, its service charge should be open and transparent, but all that information should also be provided right at the beginning. My hon. Friend is absolutely right that this is a scandal. I referred to 700 pieces of written evidence, but every day we are continuing to get leaseholders writing to us, having seen our evidence sessions on the television or read about them on the website, saying, “Me too; we have been badly treated and we want something done about it.”
On a point of order, Mr Deputy Speaker. May I first say that the House greatly welcomes the way the Chair has run this Select Committee statement, because all the Members who could be here today have managed to get in There are many other Members representing the 10 million people living in the 5 million homes affected by leasehold, so perhaps the Government would consider making an oral statement next Monday or Tuesday so that others can contribute The Government might wish to talk about how they will continue to fund the Law Commission’s work and the extension recommended by the Committee None of this would have happened without the work of Sebastian O’Kelly and Martin Boyd of the Leasehold Knowledge Partnership, so I think that we ought to pay our debt to those outside this House as well as congratulating ourselves inside it.
Obviously, as the hon. Gentleman knows, that is not a point of order for the Chair, but he has certainly put his comments on the record and thanks have gone to the rightful place, because I do not think there is a constituency in the country that is not affected.
I beg to move, That this House has considered services for people with autism Every year, my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan), in her role as chair of the all-party parliamentary group on autism, moves a motion along the lines: “That this House notes that World Autism Awareness Week runs from 1 April to 7 April; observes that autistic people continue to face a number of barriers to full participation in society; notes that it is 10 years since the Autism Act became law; and calls on the Government to improve support for children and adults on the autism spectrum, and ensure that the Autism Act is fully implemented across the country.” My right hon. Friend cannot be with us today. She has asked me to explain that a close family member is critically ill and that she cannot leave their side. Though you, Mr Deputy Speaker, I send the love of this House to our right hon. Friend. She is a formidable champion of this cause, and someone to whom many of us have turned in our own hour of need. The best tribute that I can pay to her is to deliver the speech that she prepared and would have made today. These are her words: “I welcome the Minister to the Front Bench and look forward to hearing what she has to say. My thanks to the Backbench Business Committee for granting this debate as we look forward to World Autism Awareness Week, a full seven days when people across the UK take part in activities to raise awareness of autism. I also thank the National Autistic Society for its ongoing support for the all-party parliamentary group on autism Hon. Members will be aware of my long-standing commitment to improving the lives of people on the autism spectrum, most notably through my role in spearheading the introduction of the Autism Act 2009—which has now been on the statute book for 10 years I was proud to introduce that Bill that became the only Act—which is the only Act dedicated to improving support and services for one disability. It was a landmark in the battle to improve the lives of autistic adults and their families. As a result of the Act, there has been a fundamental shift in how policy is developed and delivered for adults on the autism spectrum. For the first time, legal duties were placed on councils and the NHS to provide support to autistic adults in their local areas. In addition, the Act placed a responsibility on the Government to produce the national autism strategy, to set out its vision—and, importantly, to keep that strategy under review.”
Like my hon. Friend I pay huge tribute to our right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) and all that she has done on the issue for so long. I am listening carefully to my hon. Friend’s excellent speech, and I wonder what he would say to a constituent who wrote to me about her son. She writes: “My son is 21 years old and since leaving education has had nothing to do. He is not disabled enough to qualify for benefits but he is not able to compete for a job. He is caught in the middle.” What more does my hon. Friend think we can do to help people like that young man with their future?
I thank my hon. Friend for his words and for championing his constituents. As he rightly says, some autistic people tend to fall through the gaps. Of course, all local authorities have a responsibility to take note when it comes to autism. We see individuals who are on the autism spectrum but are not receiving help because they might be outside a defined period. The extension of plans up to the age of 25 will go some way towards addressing that, but we still see people falling through the gaps. I will touch on some of the other areas that might address his concerns, or I will at least make calls to those on the Front Bench My right hon. Friend the Member for Chesham and Amersham continues: “This year, it falls on the Government once again to review its strategy and identify what more needs to be done Each of us has about 1,000 people on the autism spectrum in our constituencies and it affects one in 100 people. We each will have many autistic people and their family members contacting us to ask for our help on areas from education to adult support, diagnosis to employment...”
The excellent speech mentioned the Government’s strategy. A perennial problem—it crops up all the time in my constituency—is the speed of diagnosis. The fact is that so many children with autism simply do not get an education. Surely the strategy must try to address that in a much better way than it has in the past.
The hon. Gentleman is absolutely right. Time and again we see that young people have to fail before they can be given the support they need. There are many examples of young people clearly failing when they go to a pre-school, but then they still have to move on to a mainstream school, where they will fail, before they can be given support. It should be blindingly obvious, and councils should look at those plans before children have to start primary school. Often councils say that they are not required to do that, but perhaps they do not know what their obligations really are.
The hon. Gentleman is indeed making an excellent speech. He also referred to parents. What is his view of the extent to which the needs of parents and family members should also be part of the strategy, not least because sometimes they do not understand the experience of their children and how best they can help? Family members also needs respite provision, for example, because of the demands of caring for children with autism. We should also recognise the amazing work that many specialist schools are doing to ensure that children with autism, who also have amazing talents, can express and develop their abilities.
The hon. Lady is absolutely right. A couple of years ago I was very proud to co-author the “Autism and education” report, which she also worked on. It showed many worrying statistics. For example, one in two teachers just did not have the confidence to teach autistic children. Unsurprisingly, 50% of autistic children had a miserable time at school and were not looked at The hon. Lady is right to give credit to the parents, who are on an incredible journey and are struggling themselves. Battling for the support that they need at the same time as providing care is emotionally draining. We all work with those parents, and we have so much respect for them.
I congratulate the hon. Gentleman on securing the debate. I also congratulate the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) on all the work that she has done on this issue The hon. Gentleman is making some important points, but does he share my annoyance about the fact that, unfortunately, autism seems to be one of those invisible disabilities? Many parents talk about the way in which others judge their children, saying that they are just being naughty. That failure of understanding goes to the heart of the problem faced by autistic children and adults, whose contribution to our communities is enormous, individual and highly important. We should be able to open our eyes to all the strengths that they bring to us, and make a space in which they can be understood through the services that the hon. Gentleman is talking about.
The hon. Gentleman has put it beautifully. As he probably knows, a recent survey showed that 50% of autistic individuals and families were scared to go out, and did not go out, because they were worried about how they would be judged. That isolation is a huge challenge for us.
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I will take two more brief interventions, and then I will make some progress.
I am pleased that the debate is taking place in the main Chamber. We had a very moving debate some months ago in Westminster Hall, but this is such an important issue that it needed to be raised here. Unfortunately I shall have to leave soon. The debate was meant to start about an hour ago, according to my diary. I am so sorry not to be able to stay, but I am so pleased that the hon. Gentleman is raising the issue now.
Order. I do not know who told the hon. Lady that the debate would start at that time. Someone must have misled her, because there was no set time for it to start.
In that case, Mr Deputy Speaker, I apologise My local authorities have some excellent care providers and support services, including Parent Carers Voice. Does the hon. Gentleman agree that services for children with autism should be financed through council budgets rather than the responsibility being pushed on to struggling families?
I think that we all face a real challenge. At a time when local authorities are themselves having to watch their budgets, it is the altruistic services—the support services—that tend to go. The challenge I face is that as authorities look just at their statutory obligations, they may end up spending more money to deliver those than they spent on some of the support services beforehand. I have every sympathy with the point that the hon. Lady has made.
May I pay my own tribute to the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan)? The hon. Gentleman is doing a very good job of reading her speech What parents find most frustrating are instances in which a care plan has been agreed and is in place, and the local authority then tries to renegotiate downwards the sum that has been agreed. That causes problems for the parents and, obviously, for the person with autism, but is also causes problems for, in particular, specialist units. Does the hon. Gentleman agree that that is unfair, and the wrong way to go about dealing with this whole problem?
I certainly do. The challenge is to ensure that care plans are flexible enough to be built on, while also including an element of prescription so that there is a proper guide. What must not happen is plans being effectively reneged on when care and support are still needed. The hon. Gentleman made his point very forcefully. He also said that I was doing a good job reading the speech; I will carry on doing my best I was talking about the impact on services, as my right hon. Friend the Member for Chesham and Amersham puts it, “from education to adult support, from diagnosis to employment, transition to transport. We know the many ways that an autistic person may turn to the state—and to us—for support, and how vital it is to make sure it is there to meet their needs The last national strategy ‘Think Autism’ in 2014 included wide-ranging actions. This was underpinned with revised statutory guidance, setting out clear duties on councils and the NHS to deliver on these actions—but we know that many local areas are not meeting all of their obligations. There are also questions about whether the Act goes far enough. As we reach the 10th anniversary of the Act, now is an appropriate time to ask these questions The All Party Parliamentary Group on Autism, which I am proud to chair, is spending this year doing just that. We are holding an inquiry into what has worked, what happens now and, most importantly, what needs to change. We are looking very broadly, to reflect the needs of autistic people,” including in health and mental health; children, education and transition; employment; access to justice; adult support; and public understanding.
I welcome the APPG’s inquiry, and, in particular, the fact that it will look into the way in which adults with autism interact with the criminal justice system. I think that is an area in which the work of the Act could be extended. I pay tribute to the families who set up an organisation called Autism Injustice, and recommend its website, autisminjustice.org, to other Members and to people watching our debate who are interested in that interaction between autism and the criminal justice system.
The hon. Gentleman has referred to adults, but I remember going on a trip with the APPG to a young offenders institution that had tried to establish a wing that was autistic-friendly, and hoped to roll it out across the estate. He is right: a big cohort of the prison population are on the spectrum, and face particular challenges that need to be looked at.
Will the hon. Gentleman give way?
I will give way one more time, but I really should make some progress.
The hon. Gentleman mentioned the issue of employment, which is vastly overlooked. Many employers do not know what adjustments they should make to become more autism-friendly, and people with autism are deprived of work as a result. Will the inquiry be looking at that issue?
A few years ago, Ambitious about Autism produced a big report looking looked at that specifically. I am fortunate to have in my constituency an organisation called Little Gate Farm, which takes people who have finished their education and makes them work-ready. However, it requires employers to give them a chance, and I am always writing to employers urging them to do so Let me give some examples. One young lad was obsessed with washing cars. We matched him up with a garage, and that is exactly what he does. Someone else was given a job in a bookkeeping firm. The big challenge there is ensuring that that young person takes time off, because they have so used to the routine. The initiative has become so successful that people are throwing themselves into work. We must do all that we can, as Members of Parliament, to pair and support people My right hon. Friend the Member for Chesham and Amersham says that we in the APPG “will hold the Government’s feet to the fire to see those recommendations reflected in the new strategy Our need to act is clear. Too many people”— as we have just discussed— “still have to wait too long for a diagnosis—more than three years in some parts of the country. Getting a diagnosis can be a crucial milestone, helping to unlock vital support. Delays in being diagnosed can result in people developing more significant needs, or mental health problems National guidance from the health watchdog NICE state clearly that children or adults suspected of being on the autism spectrum should start their diagnostic assessment within three months of being referred to their local autism team. But we know there is a postcode lottery in waiting times for appointments, with many parts of the country falling far short of the three-month target. Alongside the National Autistic Society, we have been pushing progress on this issue in this very chamber for several years. Valuable research”— carried out by the right hon. Member for North Norfolk (Norman Lamb)— “on behalf of the APPGA shone a further spotlight on these long waits and called for a mandatory minimum waiting time standard. I am pleased to have him on board again leading our inquiry on health and mental health, which heard evidence last week We also know that autistic people too often don’t get the physical and mental health care they need. They face high levels of health inequality, and evidence suggests that people may die early as a result, which has been highlighted by Autistica. It’s vital that all health and care staff receive autism training to ensure that our health service meets their needs and makes the changes and adjustments that it needs to—a key part of the Autism Act. I welcome the Government’s current proposals on mandatory training in autism and learning disability to all health and care staff following the dogged campaigning of Paula McGowan, a mother who tragically lost her son Oliver. It’s vital that this proposal is taken forward and that its impact is monitored. I hope the Minister will devote some time to make sure that this programme makes a difference. I also welcome the inclusion of autism, alongside learning disability, as one of the four clinical priorities in the NHS 10-year plan to improve health services. This is a great step towards ensuring that the NHS supports autistic people as well as it supports everyone else. It sets out actions to reduce children’s diagnosis waiting times, reduce the number of autistic people inappropriately under section in mental health hospitals, and making sure that reasonable adjustments are put in place. But we need more details on how these, and other commitments in the Plan will be delivered (and how they will be funded). I would appreciate if the Minister could update the House on when we can expect to see this much-needed detail I am pleased to see the Government already thinking ambitiously about the future of the strategy. I warmly welcome the Government’s commitment to extending the autism strategy to include children and young people, as well as adults, for the first time.”
My hon. Friend is making an exceptionally powerful speech, and I applaud his role as chairman of the all-party group. It is particularly impressive that he has been able to pick up the role in this debate of my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) in her absence Returning to the question of education, my hon. Friend touched on the subject of young people a moment ago. Does he agree that the Government’s recent announcement of an additional 37 schools across the country to provide special needs support for people, including those on the autistic spectrum, is a welcome recognition of the challenges presented to our education system by the increasing prevalence, regrettably, of autism across our communities I would like to highlight one story in my constituency that points out the need for such schools. It involves a mother of two autistic children, both of whom have to be schooled over 100 miles away from Ludlow, in the heart of my constituency, where she lives. She has campaigned with a local charity and not-for-profit group to open a new school—Overton school, just outside Ludlow, which is currently awaiting its Ofsted accreditation—partly so that other families who have to deal with the same circumstances will not have to travel 100 miles to visit their children.
My right hon. Friend is absolutely right, and I know how much he campaigns to deliver the solution he talks about because I am fortunate enough to share an office with him. He is a great champion of his constituents, and it is welcome news that more schools will be funded. The Minister will have heard his powerful pitch for his constituency. I can also reassure all Members that I am only temporarily sitting in for my right hon. Friend the Member for Chesham and Amersham; she will continue to be the chairman of the all-party group. I will now make progress, as I know others wish to speak My right hon. Friend the Member for Chesham and Amersham continues: “For many families of autistic children, securing the right support for their child at school is a very difficult task—much harder than it should be. I am sure we have all been contacted by constituents who are struggling to get the school provision and support their autistic children need—this may be a place at a specialist school, or support to enable them to thrive and make progress in a mainstream school… There’s one other very important issue that I want to draw to the attention of the House and the Minister. That is the continued inclusion of autism in the Mental Health Act as a mental disorder. What this means is that autistic people and those with a learning disability—particularly those who have behaviour that is described as ‘challenging’—can be detained under the Act when they do not have a treatable mental illness. When this is twinned with a lack of appropriate support, particularly crisis support, to prevent someone being admitted to hospital, we see the numbers of autistic people in these hospitals increase.” I would like the Government to address that challenge and issue I will conclude—I have failed to deliver my right hon. Friend’s entire speech, but she will be delighted that we have had a debate about this and raised awareness, so I finish on the following note. She says: “Autistic people—children and adults—need the right support, at the right time, in their local communities. The wider community needs to have a much better understanding of what autism is and how it affects people. There are things that all of us can do to make our society a more inclusive place for everyone—in World Autism Awareness Week and beyond”, that should be our goal.
Order. Many Members wish to speak, so there must now be a six-minute limit. I would also like to say that our thoughts are with Dame Cheryl, and she has been missed today but she has certainly been well represented.
It is a pleasure and an honour to follow the hon. Member for Bexhill and Battle (Huw Merriman) and, in spirit, the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), who we truly salute today and all of this year as we mark the 10th anniversary of the Autism Act 2009. Both he and she will agree with me that there is still a lot to be done. I am proud to be one of the all-party group’s officers chairing one of the commissions marking that anniversary and measuring progress; the one I am chairing is on employment and autism and that will be the subject of my remarks today. I also thank my staff Mike Davies and Ravina Shah, who lead for me on autism, and the work of the National Autistic Society, particularly our regional rep Henry and the Bristol Autism Spectrum Service According to a recent report by the National Autistic Society, only 16% of working-age people with autism are in full-time employment, and only 32% of people with autism are in any kind of paid employment. That contrasts with the fact that 47% of working-age disabled people are in employment and 80% of working-age people without disabilities are in employment.
Will my hon. Friend give way?
I am sorry, but I am going to try to stick to the time limit. A lot of Members want to speak The 2017 Tory manifesto pledged to see 1 million more disabled people in work by 2027. However, I am not sure that the Government are currently measuring the employment gap for people with autism, so I ask the Minister whether she is able to record the number of autistic people in work in the labour force survey and if not whether some progress can be made. More than half a million people in the UK are on the spectrum, which is more than 1% of the population. More and more people are being diagnosed, with a twenty-fivefold increase in recent years. People often, although not always, need specific help to be able to find and keep a job, so I ask the Minister to urge Jobcentre Plus to provide adequate autism awareness training The National Autistic Society campaign “Too much information” launched in 2016 was the UK’s biggest ever campaign aimed at improving public understanding of autism. The campaign’s report found that 77% of unemployed autistic people want to work and that 40% currently working part-time wish to work more hours. People with autism want to work in a wide variety of roles and respondents to the survey found that ideal work environments vary hugely, from the arts and museum work to scientific research and development. We need to break stereotypes about autism and employment and recognise that the underemployment of people with autism is an issue as well as unemployment More needs to be done to improve the lives of people living with autism. I have changed my own employment practices by altering job descriptions to be more accessible, and I am very proud of the two fantastic members of staff I have employed as a result; they are brilliant. I was also, I believe, the first MP to hold a surgery specifically for people on the autism spectrum. I know others have followed suit, which is fantastic, and no doubt they have done a better job. I am committed to making Bristol an autism-friendly city; I made that commitment when I was first elected My constituents tell me that many people on the autistic spectrum encounter barriers to finding employment. It is right that we do everything we can to end social isolation. One way of doing that is to ensure that autistic people have the same access to employment as everybody else. Employers, trade unions and public services can all play a part in this. Unfortunately, that exclusion leads not only to autistic people feeling left out but to us missing out on their skills and qualities. They have potential which is too often untapped. This is also about their families and the wider economy. We should all pledge to do everything we can to increase the employment of people on the spectrum However, employers say they feel under-equipped and the National Autistic Society survey found that 60% worry about getting it wrong and do not know where to go for support and advice about this. As an officer of the all-party group on autism chairing the commission on employment of people with autism, I will be involving people with autism but there will also be discussions for us there about practical measures and the ways to get people with autism into employment that make sense and fit their potential, but do not discriminate I will continue to campaign for Bristol to become a truly autism-friendly city. I am delighted that so many of Bristol’s employers are so keen to join me in achieving this goal. I have spoken to many employers over the last year or so about that. Every single one I have met has taken various steps to make their employment practices more accessible. So may I ask the Minister what the Government will do in turn to help to close the autism employment gap? If she is not able to answer that today, will she consider coming to our commission inquiry to discuss it further I thank all those people on the autistic spectrum who have not just inspired me but helped me, taught me and frequently challenged me on how I as a politician and an employer can do better. Autism is in my family. My autistic teenage nephew is doing really well and has so much to offer and many talents, but he is going to need employers to understand his autism and that may in turn mean that they need help. So I want every one of us here to take that away from today’s debate: the need to help employers to do better to close the autism employment gap.
It is a pleasure to follow my south-west colleague, the hon. Member for Bristol West (Thangam Debbonaire), in this important debate. The National Autistic Society says that there are around 700,000 people on the autistic spectrum in the UK, which is more than one in 100. This means that autism is part of daily life for around 2.8 million people, when we include their families. I therefore welcome this debate on services for people with autism, and I would like to raise two specific points in my contribution today First, at my surgery last week, I had the pleasure of meeting a chap called Tigger Pritchard, who is the champion for the National Autistic Society in Cornwall. He is running a great campaign to make Bodmin in my constituency the first autism-friendly town in Cornwall, following the example set by the town of Aylesbury in the constituency of my right hon. Friend the Member for Aylesbury (Mr Lidington) Tigger has been sending letters to businesses in Bodmin telling them of the opportunities that they have to help people with autism and their families to become less socially isolated. For example, if shops were to have a period of time in the day when they turned their music down or off, dimmed their lights, reduced till noise and developed staff knowledge of autism, people on the autistic spectrum would have more access to their services. Tigger has had a great response from businesses in Bodmin in the weeks coming up to April, which is Autism Awareness Month. My team and I will be meeting him again so that we can learn a bit more about autism. Should Bodmin manage to become an autism-friendly town, I hope that it will inspire many other communities in Cornwall and across the UK to become more autism friendly The second issue I would like to raise relates to the inquiry into the detention of young people with learning disabilities that is being undertaken by the Joint Committee on Human Rights, of which I am a member. Following the 2011 Winterbourne View abuse scandal, the Department of Health and Social Care’s policy response, “Transforming Care” declared that hospitals were not places where people should live. The “Transforming Care” policy regrettably missed its target to move those who were inappropriately placed in hospital or mental health care to community-based support no later than 1 June 2014. I welcome the renewal of the Government’s efforts to ensure that people with autism are not inappropriately placed in hospital care, and NHS England’s efforts to ensure that a similar scandal does not happen again On 9 January, the Committee heard evidence for its inquiry from the deputy chief inspector of hospitals at the Care Quality Commission, as well as from NHS England’s national director for learning disabilities and its current national clinical director for learning difficulties. In my view, we need to improve diagnosis and help people as quickly as we possibly can, and I welcome the new approach that NHS England has brought to its complaints procedure. It is called “Ask Listen Do”, and it allows feedback from people with autism and their families to be given and received by organisations more easily, and provides opportunities to improve the experiences of people with autism, but there is still more work to do. There is a long-standing problem of families and carers being excluded from care decisions and not given appropriate information, as we have heard from my hon. Friend the Member for Bexhill and Battle (Huw Merriman). Moreover, data from the Assuring Transformation collection shows that, although by the end of October 2018 the number of people in learning disability and autism in-patient settings was down from March 2015, the number of under-18s in those settings had more than doubled, to 250 I encourage people to submit written evidence to the inquiry, so that we can explore how and where we can improve services for those on the autism spectrum. I also want to take this opportunity to encourage all my colleagues in the House to use Autism Awareness Day on 2 April to learn more about autism and to encourage change in their communities to accommodate people on the autism spectrum and their families better. Tigger has kindly offered to come into my office in Cornwall and give us a half-hour training session so that my office can be much more autism aware, and I hope that colleagues will take similar opportunities.
It is a pleasure to follow the hon. Member for North Cornwall (Scott Mann). I congratulate the hon. Member for Bexhill and Battle (Huw Merriman) on opening today’s debate, and I join him in paying tribute to the fantastic work of the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan). I join others in sending our very best wishes to her and her family today I want to focus on children with autism. We know that, from the outset, families face an uphill struggle to obtain the help and support that they deserve, and I pay tribute to the work of a relatively new organisation in Liverpool called Autism in Motion, which seeks to provide a voice for parents. It was set up by three Liverpool mums of children on the autistic spectrum. National guidelines state that people should start their diagnostic assessment within three months of being referred to the autism team, but statistics obtained last year by the right hon. Member for North Norfolk (Norman Lamb) revealed a postcode lottery in waiting times for an initial appointment, with many parts of the country falling woefully short of the three-month target. In some parts of the country, it can take years to receive a diagnosis of autism.
Does my hon. Friend agree that it would be helpful to many families and indeed professionals who are challenged by these circumstances if the Government were able to put more resources specifically into initial teacher training and in-service training to help staff in schools to understand autism better and to support children with autistic spectrum issues better?
My hon. Friend makes an excellent point, and I shall refer later in my speech to the Abbotts Lea special school in Liverpool, which is a shining example of the very best practice that exists in our education system Delays in diagnosing autism mean that many autistic people do not receive the support that they need, which can really harm their life chances. For too many families, securing the right support for their child at school is a hugely difficult task, and can become an all-consuming battle. The passport to receiving this extra support is an education, health and care—or EHC—plan, which is intended to bring together a child’s different needs in education, health and social care. Autism is the most common type of special need for school pupils who have an EHC plan. However, as budgets have been reduced, local councils often struggle to respond to demand, leading to EHC plans being refused or delayed well beyond the 20-week cut-off date by which a decision on whether to approve an EHC plan should be made.
My hon. Friend is making an important point. In my experience—and, I suspect, that of others—the delays in getting an assessment are resulting in some parents having to pay between £2,000 and £3,000 out of their own pocket because they cannot afford to wait such a long time for their children to be assessed.
My right hon. Friend makes an important point. This is one of the many aspects of this challenge that makes life very difficult for the families of children with autism, and we really need to do better by them Even those families who do get a plan are often not given the support they need. A report published by the all-party parliamentary group on autism found that only one in 10 parents were very satisfied with the process of agreeing an EHC plan for their child, with 60% saying that they were dissatisfied. In Liverpool, a recent Ofsted inspection into how Liverpool City Council and the local clinical commissioning group catered for children with special educational needs and disabilities found “significant concerns” and “long-standing issues” in local practice. In particular, the inspection found serious weaknesses in the EHC planning process as well as in the quality of the plans that were being made. In response to these concerns, the city council is required to submit a written statement of action to explain how Liverpool will tackle the areas of significant weakness identified I am pleased that the council is responding with the urgency that that report demands. It has responded positively, but we know that Liverpool is far from unique. In fact, a majority—more than 50%—of the SEND area inspections nationally have resulted in the requirement for a statement of written action. This is a huge national challenge Across the country, devastating cuts in local government funding have contributed to a crisis in funding for children with special education needs and councils are struggling to meet their statutory duties for children with autism. Data from freedom of information requests and council reports show that councils are overspending massively. Overspending on SEND has trebled in the past three years, and it is continuing to increase, with councils having to raid their overall schools budget for millions to respond to demand. Cuts to local authority budgets have further reduced the kind of support that used to be in place for social activities for children with autism and additional support for their families Despite this challenging environment, there are brilliant examples across the country of great support for autistic children and their families. In Liverpool, we have some truly outstanding special schools, and it is not just me saying that: Ofsted says that they are truly outstanding, too. They include three in my constituency—Redbridge, Bank View and Ernest Cookson—which serve children with autism I want to focus on Abbot’s Lea School, which is in fact in the constituency of my hon. Friend the Member for Garston and Halewood (Maria Eagle). The school caters for over 250 students from three to 19 years old, and its philosophy of education is the ASD model. I pay tribute to headteacher Ania Hildrey, who told me this week that she focuses equally on academic progress, specialist therapeutic support and development of life skills. She has transformed its curriculum, and she unapologetically aspires to be the best special school in the world Like so many other specialist schools, however, Abbot’s Lea is being held back from being able to provide the very best service, because local government funding does not go far enough to meet the demand for specialist placements or mainstream support. Ania told me that some of the welcome reforms in the Children and Families Act 2014 have not been implemented as planned, leading to poor school planning and a lack of joint commissioning. Delays in autism diagnosis often mean that schools receive referrals much later than they would like, and that limits schools’ ability to transform pupils’ lives Abbot’s Lea is keen to engage with both Government and the local authority to help shape the provision of education for children and young people with autism. I urge the Minister and her colleagues in the Department for Education to listen and engage with the concerns of brilliant headteachers such as Ania and with families in Liverpool and elsewhere and to work on a cross-Government basis to improve outcomes for children with autism. We urgently need to improve the quality of services provided to children, young people and their families, but that can be achieved only with proper resourcing and by ensuring that the barriers that still exist between our health and education systems are broken down. If we are truly going to make the progress that we all want to see, it is incumbent on us to listen to children and young people with autism, to their parents and families and to professionals, such as Ania Hildrey, who are working so hard to deliver the best in schools in Liverpool and around the country.
I am proud to be a vice-chair of the all-party parliamentary group on autism and to have served as a governor at a special school in Dudley that had a particular focus on autism and Asperger’s. Ten years have passed since my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) steered the Autism Act 2009 through this House as a private member’s Bill, so it is a good time to reflect on not only all that has been achieved, but all that still needs to be done truly to deliver on the promises of that legislation to improve support and services for people with autism and their families In the time available to me, however, I will focus on issues that relate to children with autism. As the hon. Member for Liverpool, West Derby (Stephen Twigg) said, nearly five years after the Children and Families Act 2014 became law, progress on implementing the new SEND system is still patchy at best. According to the National Autism Society, 42% of families are being refused education health and care assessments when they are first requested and more than 70% are waiting longer than six months for support at school As of January 2018, there were 825 pupils in Dudley’s special schools. That compares with, according to the Department for Education, 119,910 pupils with autistic spectrum disorder in state-funded schools in England. Of those, more than 70% were being educated in mainstream schools, and that has huge implications for teachers and teacher training. That is why it is so important that, since 2016, the new teacher training framework has made supporting children with special educational needs, but particularly autistic children, a core part of the initial teacher training. That training and support needs to be stepped up, so that everybody can be confident that every teacher in every school up and down the country is competent and confident working with children with autism. If teachers do not currently have a child with autism in their class, they will at some point, probably very soon in their career The issues of working with, supporting and educating autistic children are very real. As my hon. Friend the Member for Bexhill and Battle (Huw Merriman) suggested, the behaviour of children with autism can be perceived incorrectly. Children on the autistic spectrum can often find themselves being chastised for not behaving in exactly the same way as other pupils. By not behaving in the way that teachers would expect, they can be punished in a way that may be appropriate for the class as a whole, but completely inappropriate given the special educational needs and medical condition of such children Government figures show that autistic pupils are four times more likely to be excluded from school compared with pupils who have no special educational needs. Clearly, there is an ongoing debate about the impact of exclusions, but there can be no doubt that the fact that autistic pupils are far more likely to be excluded has a severe impact on the life chances of children whose life chances are already impacted by their medical condition. That effect is most obvious in opportunities for future work and for training In many cases, the Government are making good progress on the target of getting a million more disabled people into work. However, the employment gap for people with autism is far wider. Just 16% of autistic adults are in full-time work, so it is essential that Jobcentre Plus staff and work coaches properly understand autism and that employers have the full range of support and advice they need to employ autistic people confidently I will conclude as I have done in similar debates by reflecting on the words of Natalie, who was one of the parent-governors at the school where I was a governor. Natalie said of her son Will, who attended that school: “Autism is only a small fraction of our son. It is not everything he is. Will is so much more than the label society has given him. We want him to be accepted, and for him to be accepted equally as a citizen of this country as his peers are.” That is what all parents want for their children. In this 10th anniversary year of the Autism Act, we have a responsibility to do all that we can to make that wish a reality.
It is a pleasure to follow the hon. Member for Dudley South (Mike Wood). I pay tribute to the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) for all her work over the past decade, and I send my best wishes to her and her family at this difficult time. I also congratulate the hon. Member for Bexhill and Battle (Huw Merriman) on starting this debate in her absence My interest in autism comes from the many constituents who have had cause to contact me. Some have autism or have a child or family member with autism and have faced a battle to secure the support and access to services they need. Too often, autistic people and their families face significant battles over a long period and across a range of public services, including education, health, housing and the welfare and benefits system. I have supported many families who have had to battle for assessment and diagnosis. Even when they succeed in getting a diagnosis, they often do not receive additional support. I have helped constituents with autism who are struggling to access the benefits they need, because DWP assessment processes are simply not fit for purpose for people with autism. Most heartbreakingly of all, I have supported constituents whose loved ones are in institutions, long-term hospital care or, as in one case, supported housing where their needs are not being met and where they have in fact suffered abuse and neglect Autism is not a learning disability and it is not an illness; it is a form of neurodiversity. I commend the work within my own party by Neurodivergent Labour, which is working to ensure policy commitments to create a society that works for everyone living with autism and other forms of neurodiversity. Autistic people often have very special gifts and talents, like the young man who spent time doing work experience in my office after his GCSEs last summer and who completed the most brilliant analysis of crime statistics in my constituency I have ever seen My experience is that autistic people are too often being let down across many public services, because schools are often not well enough equipped to meet their needs, because health services are not arranged to be accessible and because there is insufficient supported housing in small community settings, so far too many children and adults with autism are still in long-term hospital accommodation. We must call out the impact of austerity on school provision for children with autism. Teaching assistants have a vital role in providing additional support in the classroom for children with autism, in helping to shape curriculum content to meet their needs and in helping to explain and mediate to manage their anxiety. Schools that are being forced under this Government to make teaching assistants redundant will run a greater risk of failing their students with autism Understanding that challenging behaviour in people with autism is often a symptom of anxiety not a sign of misbehaviour and that the route to addressing it lies in de-escalating and managing fear and anxiety rather than in greater discipline would be transformative in the classroom and prevent many exclusions. The Government have introduced new training in autism awareness for trainee teachers, but there is a huge knowledge gap in the existing workforce that needs to be addressed with properly resourced training for teachers and support staff Austerity is also contributing to increased difficulty with diagnosis and in accessing support post diagnosis. Many local authorities are being forced to raise the threshold for support because, across both child and adult social services, they are struggling to discharge even their basic statutory responsibilities. We need additional resources to be put into diagnosis and post-diagnosis support It has long been reported that there is a very significant under-diagnosis of autism in women and girls, and there is now emerging evidence that, for far too many women and girls, an autism diagnosis happens only after they have been admitted to hospital due to severe mental illness, whether an eating disorder, depression or an attempt to take their own life. This is simply unacceptable. What practical action is the Minister taking to address under-diagnosis in women and girls and to stop a lack of support on living well with autism resulting in an unnecessary deterioration in mental health It is astonishing that, eight years on from Winterbourne View and with “Transforming Care” due to end imminently, we are still living with the scandal of people with autism, a learning disability or both living in long-term hospital accommodation, where far too many of them are still subject to human rights abuses, including prone restraint and neglect This Government have failed to implement “Transforming Care”—there is no denying it and no escaping it. Private psychiatric hospitals, which are no place for any young person with autism to live, have been allowed to expand at huge cost to the public purse, while there has been paltry investment in delivering community-based supported housing in which we know people with autism can thrive. Will the Minister commit to renewed funding to deliver “Transforming Care” today Finally, my constituents Isabelle and Robin Garnett, whose son Matthew I have mentioned many times in this Chamber following his detention at St Andrew’s Hospital, Northampton under the Mental Health Act 1983, where he suffered appallingly, have launched a new campaign this week. #HumanToo is a campaign to give visibility to people living with autism in our community and against the abuse and neglect that far too many have suffered. Such a campaign should not be needed, but, shamefully, it is. I ask the Minister to support this campaign, not just with words but with meaningful action to ensure that every person living with autism has access to the support, services and understanding they need to live well and to fulfil their talents and potential in our communities.
It is a pleasure to follow the hon. Member for Dulwich and West Norwood (Helen Hayes), who opened by saying that autism is about neurodiversity. Autism should probably be included on my list of interests, because I talk about it so often. My son is about to turn 20, and he has been diagnosed with Asperger’s. He is in his first year at university, and he is thriving precisely because, along with his personal courage, he had the great fortune to have teachers who took the time to learn how they could help him stay in a mainstream school. He has proved it is absolutely possible for these mostly young men, but some young women too, to thrive in adulthood and be everything they are born to be I want to raise three points. First, autism is classified as a mental health disorder in the fifth edition of “The Diagnostic and Statistical Manual of Mental Disorders”—an American diagnostic tool that is used globally—which is simply wrong. The Government need to take on that global network of conversations by saying it is unacceptable I have a particular beef about mental health, as everyone knows. Mental ill health is where medicine needs to come in and support people, because mental health is something we all have every day of the week—sometimes it is in good order, and sometimes it is not in such good order. Mental ill health is something specific. Those who are autistic do sometimes suffer from mental ill health because of the pressures put on them by situations they find too difficult to cope with, but they are not suffering from mental ill health by being autistic. Will the Government please do more to take on this international classification, which is simply wrong and drives all the wrong outcomes The visible symptoms of autism include difficulty with social interaction and, indeed, a lack of interest in social interaction. There is some interesting research going on at Stanford University’s school of medicine into why that might be, and there is a particular brain pathway, the mesolimbic reward pathway, that causes people to enjoy social interactions. If the pathway is not stimulated, it may not develop at all There is also work to identify neurological activity between the left and right sides of the brain, and those who are autistic seem to have much less interactivity between the two sides of the brain, which also reduces the social skills that we consider to be neurotypically normal. It is important we tackle this, because we need to get the classification of autism right. If we identify where autism sits in relation to the bit of us that is not like the rest of us, we will start to make policy that fits those with an autism diagnosis Secondly, I am proud to be a member of the all-party parliamentary group on autism, and I am working with the hon. Member for Bristol West (Thangam Debbonaire) on employment, specifically in the military. I am trying really hard to get the Ministry of Defence to let me do some work on why having an autistic spectrum disorder is currently an automatic disbarment from applying to the military in the United Kingdom. I have not looked at whether that is the case globally, but it is a fundamental failure on our part There are many senior members of our military who are clearly on the autistic spectrum, and they are brilliant leaders in their field. Many more young people are now being diagnosed, thank goodness, but they are being disbarred because they are listing themselves as having an autistic spectrum disorder, which should not be the case. We are losing the opportunity to employ the brilliant minds with extraordinary focus that we need in some areas of our military for the nation’s good. I challenge the Minister to help me break through that Main Building wall to see whether we can make some progress Thirdly, like everything, if we get this right at the beginning, we can make better progress. The diagnostic system is just not good enough. I paid a very large sum of money to get my then eight-year-old boy, James, diagnosed through the private system, which gave him and us a tool with which to work. We were very lucky to have great teachers, too, but that diagnosis gives parents a sense of power that they can look after their children We keep struggling on how to make progress, and I raise it again. Will the Minister please sit down with me and others to think about how we could have regional diagnosis centres? It is difficult to ask every single one of our 150 councils to have great teams of psychiatrists and healthcare professionals to get this right. Why do we not have regional centres When pre-school teachers see that young children who are not neurotypical have particular attributes and socialisation issues, and so could clearly be autistic, we could send those children to get a diagnosis very early. That would reduce the huge costs of mental ill health and school exclusions that often result, which the state is picking up. By the time these children are 18, they are often unable to interact with society in a constructive way because they have been battered for too long Can we please consider having regional centres of excellence for diagnosis to ensure we scoop up these young people much earlier and to ensure that we get the very best out of them? Alongside my son, I see many extraordinary young men and women who will bring great value to our country. We need to make sure that we do not lose any more of these children along the way.
May I, too, congratulate the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), who, sadly, cannot be here because of that family situation, on her speech? I also congratulate the hon. Member for Bexhill and Battle (Huw Merriman). I think he would agree that he proved that, as the old song says, there’s nothin’ like a Dame, but he did an admirable job in delivering her speech and in answering interventions from colleagues from across the House I take an interest in this subject, as do many Members, through constituency casework, and I have particularly focused on adults with autism. Understandably, there is often a lot of debate about children with autism, but those children grow up to be adults, and often many of the difficulties can arise when that cliff edge comes and children with autism become adults. Sadly, this often ends up with adults with autism coming into contact with the criminal justice system, as happened in the case of one of my constituents, whom I will not name for obvious reasons. The trait of stimming is shared by many people with autism, but it is not generally understood by the general population. It is the repetitive behaviour of some with autism in order to calm a situation, but it can be misinterpreted sometimes as a criminal action. In the case of my constituent, that led to his being arrested on two different occasions by the British Transport police when he became nervous travelling on public transport. This ended up with his being inappropriately cautioned and that remaining on the record, despite the fact that that caution was later withdrawn, in recognition of the fact that he had not been given the appropriate support that adults with autism are supposed to get when they come into conjunction with the criminal justice system.
What has been highlighted is that travel is also traumatic for people with autism. Will my hon. Friend join me in congratulating Cardiff airport on training its staff to support children and adults with autism when they are travelling through the airport?
I absolutely join my hon. Friend in congratulating Cardiff airport on that. Going through an airport, with its security and everything that comes along with it, is a stressful enough situation for anyone, so the fact that the airport is doing that is very much to be welcomed Lord Bradley, a former Member of this House, produced a report in 2009 on how not only people with autism but other individuals with mental health issues come into contact with the criminal justice system. At the end of last year, he and I, along with some families of adults with autism, arranged to meet the new head of the new Independent Office for Police Conduct to talk about the way the police often deal with adults with autism when they come into contact with them, and with the complaints that then come when those adults with autism have been treated inappropriately and not according to the guidelines originally envisaged by Lord Bradley back in 2009 Michael Lockwood, the IOPC’s new head, is to be given some credit for engaging seriously with this issue. We can see a sea change in attitude on this issue from the new IOPC when compared with the former Independent Police Complaints Commission. For example, he has agreed to meet and engage with the families of those who have had cause to raise complaints with the IPCC and the IOPC, and to involve them in designing the ways in which the IOPC will respond. There is a recognition that often these sorts of inquiries can be confrontational, whereas what is really needed is to get to the heart of the matter and the truth, and to make sure that lessons are learned and spread throughout the criminal justice system, particularly in the police force One thing that is being done by the IOPC, which I welcome very much and think should be done in other organisations, is that it is recognising that employees in these organisations will often have children with autism or relatives with autism, and that they can bring some expertise to the organisation when they are interacting with those with autism. For example, the IOPC recognises that many members of its staff are from families that have experience of autism and that they can bring an expertise within the organisation when looking at these cases where complaints are raised. I welcome that, because that sort of learning is what needs to take place across the police, the courts, the prison system, adult and children’s services across the country, and the NHS My hon. Friend the Member for Bristol West (Thangam Debbonaire), who is no longer in her place, was talking earlier about what was going on in Bristol. In the case of my constituent and a couple of other families, I welcome the fact that, as I understand it, adult services in Bristol have agreed to review some of the cases they have dealt with in recent years, with a view to publishing a report, appropriately anonymised, that can provide lessons learned to people right across the country. That is very much to be welcomed My constituent has got together with other families to help set up an organisation called autisminjustice.org. I recommend that Members look at the stories on the site about the way in which these families have come into contact with the criminal justice system. The organisation’s long-term aims are to ensure: “That criminal justice and care professionals are aware of and follow existing guidelines and policy relating to autistic people in a way that properly safeguards them That these professionals, as well as the general public, understand autism so that autistic people’s appearance and/or behaviour is not misunderstood and misrepresented in a way that puts them at risk of serious harm.” Those are very laudable long-term aims I appeal to the Minister to engage with those families, with that organisation and with other Departments across Government to make sure that government is working in a joined-up way on this. Those of us who have been Ministers understand that it is not always easy to get out of the ministerial silos that Whitehall imposes upon us, but government works best when Ministers from different Departments get together with a common purpose. Surely on this issue of all issues, where there is cross-party support in this House and general agreement on what should happen, we should in no way be inhibited by Ministers not being able to work together. I urge the Minister to do as much as she can to work across Whitehall on this issue.
I, too, wish to start by paying tribute to my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan), and I am glad that all our thoughts are with her In my constituency, I am very fortunate in having numerous institutions, be they charitable or, as it were, full-time, and individuals who do a lot to take things forward, examine them and do the research on autism. I wish to make two mentions to start with. First, it was through this issue that I was introduced to Dame Stephanie Shirley, whose work in this area is phenomenal. She has spent a huge amount of her own money taking forward research in this area, and she is a beacon when it comes to providing a focus on dealing with autism and showing us what to do. Secondly, I would like to mention a charity called Music for Autism, which was set up with the Orchestra of St John’s. It uses music to influence the lives of those with autism. Those who have seen it in operation will know that it is a fantastic experience to see how members of the orchestra lap up the opportunity to work with those with autism and help enrich their lives. That is a great achievement I wish to concentrate on three areas. First, I want to follow the hon. Member for Cardiff West (Kevin Brennan) in commenting on the treatment of those with autism in the justice system. That needs to be concentrated on in three areas in particular: the police; the courts; and among prison staff, if it eventually comes to that. Only two things need to be done to take this issue forward in a big way. First, we need to identify those with autism at a very early stage, because as the hon. Gentleman said, that helps to make sure that we do not end up in a whole lot of disputes at a later stage. I am aware that the courts have put a lot of effort into making sure that they are autism-friendly for people appearing before them. I am also aware of a number of prisons that support people with autism; I think there is a pilot scheme, and I hope it will be rolled out across the prison system and that we can learn the lessons from it The second issue I wish to mention is education. Several Members have already mentioned education, but I wish to cover a particular aspect: the involvement of people with autism in designing training for teachers. Several Members have hinted at that point, but I do not think anyone has tackled it as boldly as I am going to. The involvement of people with autism in the training of teachers is absolutely essential. They can provide help with training and influence how it is devised in many ways, all of which will lead to more choice and to our paying special attention to the needs of those with autism Finally, I wish to comment on autism and jobs. Last year, I was appointed a special envoy for an autistic charity called SPACE—I am never good with acronyms, but I think it stands for Supporting People with Autism into Continued Employment. I became the envoy for that charity to promote the idea of Members taking on staff with autism in their offices. As a way of demonstrating that, I enthusiastically took on a young man from Hornchurch who has autism. When it came to saying goodbye to him at the end of his period with me, I really regretted that he was going. He had been an outstanding worker and made an outstanding contribution to my office. It had been a great experience, not only for him but especially for me and my staff. If we can encourage more of that, we will have a much better way forward for those with autism.
It is a pleasure to follow the hon. Member for Henley (John Howell), whose contributions are always well worth listening to. I thank the Backbench Business Committee for the opportunity to have this debate, of which I was happy to be one of the co-sponsors. I also thank the hon. Member for Bexhill and Battle (Huw Merriman) for setting the scene on behalf of the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), who would have been here had she not been detained elsewhere The National Autistic Society definition of autism sets the scene: “Autism is a lifelong disability which affects how people communicate and interact with the world. There are approximately 700,000 autistic adults and children in the UK.” Without the right support or understanding, autistic people can miss out on an education, struggle to find work and become extremely isolated. As an active constituency Member of Parliament, every week in my office I deal with and try to help people who have autism and their families, including on benefits, educational assessments and family issues and pressures The National Autistic Society’s “Too Much Information” campaign highlighted how, in spite of increasing awareness around autism, there is still a significant lack of public understanding, and there genuinely is. Research shows that although 99.5% of people in the UK have heard of autism, only 16% of autistic people and their families think that the public really understand them. Half the autistic people and their families said that they sometimes do not go out because they are worried about the public’s reaction to their autism All that is certainly true, but I was also sent a link to a few blogs by a parent in Strangford, who said: “I don’t have the words to explain it but this is how I feel:” It read: “I am not a warrior mom. I am not a superdad I am tired I just want what everyone else has—time to enjoy my kids, without the constant, mind-numbing terror of worrying about their future I don’t WANT to be an activist. No-one does Nobody woke up one day and said ‘Hey, I want to take time and energy away from my family to fight for someone’s rights.’ Plus, I want to feel the positive effects NOW! I ain’t doing this just for other people, honestly, I am doing it so that I too can benefit from the changes So instead of patting me on the head, shaking my hand, congratulating me on how selfless I am, blah di blah blah blah…help a brother out…give a sister a break Do SOMETHING DEFINITE to help change things, NOW and for the next generation. Ask me, I have ideas Otherwise, miss me with the…platitudes, please.” That is a heartfelt request from one of my constituents. I want to help this father who contacted me and who feels like that, and all the parents like him. We have a duty not to offer platitudes about rainbows and sunshine or individually unique snowflakes, all of which are lovely and touch the heart emotionally. We have a duty to provide physical support and practical advice. We have a duty to provide respite for parents who are on the brink of a breakdown, and for siblings who feel invisible as they strive not to add to their mum and dad’s concerns because they are dealing with enough. We have a duty to provide respite to the child and to introduce them to people outside their circle in a controlled and helpful way. I do not believe that we are fulfilling our duty In Northern Ireland, we are certainly not fulfilling our duty in the way that I would like us to. A number of families with children with challenging behavioural problems—children who have met the criteria to be considered for overnight care, which is so important—have been told that they will have to wait several years before they can access overnight respite care. According to the Northern Ireland Health and Social Care Board statistics for 2014-15, there were 4,031 children in need, known to social services and with a disability, and 1,210 children with a disability who had received respite care. There are 10 respite facilities across Northern Ireland, each of which has between five and eight beds that can be used to care for children overnight, but more than 1,200 children are trying to access those beds In my previous job in the Northern Ireland Assembly, I was pleased to be a member of the all-party group on autism. We fought a campaign over a period of time. The Autism Act (Northern Ireland) came into law in 2011, after I had left the Assembly, but I would have had some input into the process through the all-party group In the limited time I have left to speak, let me outline what the autism strategy has done in Northern Ireland. The autism strategy for Northern Ireland runs from 2013 to 2020, and the action plan ran from 2013 to 2016. We focused on the following issues: awareness; accessibility; children, young people and family; health and wellbeing; education; transitions; employability; independence, choice and control; access to justice; being part of the community; and participation and active citizenship. We published a progress report on the autism strategy for 2013 to 2020 and the action plan for 2013 to 2016. It is a pity that we do not have a functioning Northern Ireland Assembly, because these issues would fall under the remit of that Assembly, rather than here. The Assembly still has that responsibility, even though it is not functioning in the way it should be It would seem that we have got to the breaking point, which concerns me greatly. It would seem better to have in place a preventative scheme for the families of those who struggle and live the daily autism battle, so that they do not have to reach the breaking point. I am particularly pleased to see the Minister in her place; we will have a positive response from her, as we always do, and I look forward to that response. The overwhelming feeling that I get is that parents are weary—weary from lack of sleep; from fighting the same battles with the child every day; from dealing with people’s expectations of how their child should behave; from fighting to get recognition for their child and to have adequate support in place to reach their potential; and from knowing that their other children are not getting the attention they need. They are just weary, and they need more help, right now.
It is always a pleasure to follow the hon. Member for Strangford (Jim Shannon) after a rare opportunity to hear him contribute to a debate. His contributions are always well thought out, passionate and well structured on behalf of his constituents. I definitely agree with him about the need at some point to get the Northern Ireland Assembly back up and running, doing its job again and tackling the issues that need to be tackled on behalf of Northern Ireland. Just ramming business through this place in a day is not what any of us really wants to see. We want to see the politicians who were elected to serve Northern Ireland doing so Let me come to the main substance of the debate. I pay tribute to my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) and to my hon. Friend the Member for Bexhill and Battle (Huw Merriman) not only for securing this debate, but for the passion that they bring to this issue. Obviously, our best wishes go to my right hon. Friend, who is facing a family situation This is an interesting debate. When I was about 12, I sat the Mensa IQ test and got a reasonable rating.
Division!
Yes, thank you—and I like the shadow Minister, too That was interesting, because at that rating you are not that far off the autism spectrum. A lot of people forget that the dividing line is not very big. Many people around that mark will show some traits. For example, if we go to a talk on this matter and find someone very interested in politics, when we ask them what party they support, they say, “I don’t really support a party, but I love analysing election nights, with all the statistics.” I asked such a person to reel off election results in the local area—I was in Coventry at the time on the city council, and they were absolutely able to do that, because that was their special interest. They were very passionately interested in politics, but when they were asked, “Which party are you thinking of joining with all this interest?”, the answer was, “Well, I’m really into that. I’m into the analysis of politics.” That was their special interest This is about having a real understanding of autism. What started changing some of my perceptions about people with autism was when I had a volunteer activist who struggled slightly socially in certain scenarios. However, when we were carrying out—of all things—a telephone canvassing session with an automated dialling system, this guy was an absolute star. The rest of us were struggling. The rest of us were finding the whole process very difficult, but he absolutely engaged with it. It was pushing his mind to run slightly faster, and he had ability enough for the whole team. He was given a script, which enabled him to engage brilliantly with people on the phone. That was where his ability came through. In fact, what would normally be seen as a disability became a huge ability. That is why, as a Member of Parliament, I became very keen to challenge perceptions—for example, as has already been touched on in this debate, when someone is seen as naughty. We need to make it clear to employers that, when it comes to people with autism, it is about how they are supported when they enter employment I remember doing some work on this with a team when I was deputy leader of Coventry City Council. We looked at why people had left particular jobs—in programming or in engineering. Their skillset was there, their knowledge was there and their strengths were all in that area. What we found was that they were struggling with things such as the lunch room and the office environment—places where they had to interact with people. Everyone else assumes that such interaction is quite simple, but the perceptions of how these people would deal with them were different I welcome the fact that support is being provided, but I would be interested to hear from the Minister how much further we can go. We are talking not just about an employer doing a favour, but about an employer sometimes bringing in an absolutely unique talent who may be able to address a job in a way that, bluntly, most of us in this Chamber would struggle with. Sometimes the way an autistic mind works can become a massive advantage in engaging in areas such as IT and tech. That all means that we need the appropriate levels of support. I do have some concerns over the pressure on higher needs funding in Torbay. I recognise that the Government recently provided some extra funding, but there has been an issue in Torbay. I do not think that we are unique in this, as some of the other smaller coastal unitaries face an issue with the deficit. Traditionally, their funding levels are lower than other areas, which makes it harder for them to deal with such issues. They are paired up with larger—bluntly, more wealthy—counties We also need to be clear that this issue is not just about learning, but about having fun. I welcome the fact that support services are available in the Bay. For example, the ASRUS Group meets at the YMCA in Dartmouth Road, Paignton. It is not just about providing education support, but about providing social support to build skills This has been a worthwhile debate. I have enjoyed sitting through most of it and listening to the contributions. It will be interesting to hear from both Front-Bench speakers what their thoughts are on this subject. Some people who have absolutely unique talents and some of the greatest minds on this planet may be just on the autistic spectrum, or only just below it. That is where we need to change our perception. It is not about someone with a disability, but about someone who may have a unique ability that we could unlock with the right support.
It is a pleasure to follow my hon. Friend the Member for Torbay (Kevin Foster), who made many powerful points. I commend my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan) for securing this important debate ahead of World Autism Week and thank my hon. Friend the Member for Bexhill and Battle (Huw Merriman) for his outstanding representation of her in the Chamber today. I also commend the all-party group report, “Autism and Education 2017”, which was written in partnership with the National Autistic Society I am a member of the Education Committee, which is also looking into the needs of children and young people with special educational needs and disabilities. The autism APPG’s report contained some shocking statistics. The one that really upset me was that fewer than half of the children and young people on the autism spectrum going to school say that they are happy. It says that a lack of understanding from their peers and their teachers is the main reason for such unhappiness. The thought of any child or young person not looking forward to their day at school is, to me, so incredibly sad and utterly avoidable. We need better understanding and a co-ordinated resourced approach.
I do not wish to take up much of the House’s time, but has the hon. Lady had a chance to meet my constituent, Deborah Brownson, who has created extraordinary facilities through the online autism plan to help parents and children who are facing difficulties? If she has not met her, she should and join the campaign to get Government support for what Deborah is doing.
I thank the hon. Gentleman for his intervention. I have not met Deborah, but I absolutely look forward to doing so. May I task him with connecting us Almost immediately after I was elected to this House two years ago, calls for my assistance arrived from families living with autism. They have told me about living with the daily fight for support, for a diagnosis, for professional advice, for an education and health care plan, for the necessary resources to actually carry out the recommendations in the plan, for reasonable adjustments in school and for flexible working arrangements with parents’ employers. As one of the many parents who responded to my call for information ahead of this debate said, “Everything is a fight. To get help is a fight and to find anything that you are entitled to is a fight.” Each family I met said the same thing over and over again. Families talk of the agonising wait for a diagnosis, in the hope that a diagnosis will bring some certainty and a joined-up forward plan but, all too often, it does not We in Copeland live in a rural and remote community, so one may have expected self-sustaining groups to form to support each other; it is what we do. Groups such Shine for Autism, Autism Around the Combe, the West Cumbrian Autism Society and the award-winning Sellafield Site Autism Support Network have been formed out of absolute desperation and in recognition of the fact that so many people are living with autism and these groups could make a real difference. And they do. I pay tribute to all the volunteers and parents who selflessly support others. The resilience and concept of helping each other make me so incredibly proud of my community, but it is not fair or right, or sustainable in the long term, because the parents I speak to say that they are “at the end of their tether.” This fight is resulting in relationship breakdowns and mental ill health conditions, and in parents having to reduce their hours, or having to give up work altogether because of the lack of childcare for families with autistic children. Autistic children are three times more likely to be excluded from school for a fixed period than children who do not have any special educational needs and, with just 16% of autistic adults in full-time work, the UK is missing out on talent and much-needed skills. Child and adolescent mental health services came up time and again as being a critical but under-resourced source of help in Copeland and across Cumbria. Too many children and young people are being left without education, mental health support or any reassurance of a plan My right hon. Friend the Member for Chesham and Amersham introduced the Bill that became the Autism Act in 2009, and 10 years on it is time to recognise the calls for training for school staff, for reasonable adjustments in schools and for guidance and resources for local authorities to provide the full range of educational provision and support. I am delighted that the Academy for Autism will be opening in West Cumbria in September and that the outstanding Mayfield specialist school in Whitehaven will move into its brand-new facility later this year, too The Department for Education increased the total high needs budget across England from £5 billion to just under £6 billion in 2018, and funding is set to rise above £6 billion in 2019-20, so there has been much progress, but I urge the Minister to consider a different approach in rural and remote areas, as we are missing out, our children are missing out and the country will miss out on the abundance of talent and skills, which are so desperately needed. My call to the Minister is: please help me to find a way to better help these dedicated groups in the vital work they do.
Like other right hon. and hon. Members, I place on the record my sincere thanks to the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) and pay tribute to her work. We, like others, are thinking of her at this time. The hon. Member for Bexhill and Battle (Huw Merriman) did an excellent job of putting that on the record and should be very proud It is a pleasure to sum up the debate on behalf of the Scottish National party. It has been an excellent debate, despite the time pressure. It is incredibly annoying to sit through debates knowing that people are having to pack so much in, so I hope that we can have more of these debates. We have heard excellent contributions from the hon. Members for Bexhill and Battle, for Bristol West (Thangam Debbonaire), for North Cornwall (Scott Mann), for Liverpool, West Derby (Stephen Twigg), for Dudley South (Mike Wood), for Dulwich and West Norwood (Helen Hayes), for Berwick-upon-Tweed (Anne-Marie Trevelyan), for Cardiff West (Kevin Brennan), for Henley (John Howell), for Strangford (Jim Shannon), for Copeland (Trudy Harrison) and for Torbay (Kevin Foster). All made very powerful speeches, either about their constituency casework or their experience with family members. I was particularly moved by the hon. Member for Berwick-upon-Tweed, who spoke about her 20-year-old son and how he is thriving. We all wish him well On a personal level, I want to thank a constituent of mine, Aileen Orr, who lobbied me to attend this important debate. She was right to say that, as has been backed up today, there is still not enough knowledge about autism and many people can still be quite ignorant about it, which is a point on which we must all reflect. World Autism Awareness Week is a good opportunity to give this issue the focus it deserves. Particularly in a Parliament so dominated by Brexit, such debates remind us that there are other issues that people want us to focus on, and there is a lot of unity in here today As Members would expect, I want to focus on the situation in Scotland. We have made good progress, but there is still a lot more work to do, as I will come on to. Last year, the Scottish Government refreshed their strategy for autism, which runs from 2018 to 2021. The review was a good opportunity to listen to people and to look at where we could improve, and I am grateful to our Mental Health Minister, Clare Haughey, who just two days ago announced a complete review of mental health legislation and autism legislation—the hon. Member for Berwick-upon-Tweed made a point about the two things being treated separately. It is good to see that recognised Among the themes arising from the review were the need for professionals across various areas to get more training in autism—that point has been made today—and issues of work and employment. The 16% figure that the hon. Member for Bristol West mentioned makes it clear that a lot more work needs toIt was not lined up for this debate, but on Monday I had the pleasure of visiting Aultmore Park Primary School, in my constituency, which is celebrating its 10th birthday this week. There is a language and communication resource on the school complex that works very closely with the school to make sure that the children attend from primary 1 to primary 7 and access the excellent opportunities. There was a lovely and exciting atmosphere in that school on Monday. It is such a pleasure to have it in my constituency On education, I know from my constituency caseload that we still have a lot more to do to support families. Like many other Members, I remain incredibly frustrated about the waiting times—in Scotland, they are often between one and two years, which is far too long—and in that regard I pay tribute to East End Carers, based in Shettleston, and the Happy Club, based in Provanhall. So often it is these voluntary charities that provide emotional and practical support for families, particularly in the period immediately after a diagnosis Part of the reason for the long diagnosis process is a lack of educational psychologists, which is a major issue in Scotland. There is only one university—Dundee, I think—where people can train to be educational psychologists. I encourage our Ministers north of the border to look at that.
Not enough is being done for schools. Teachers can study psychology. Some people teach and are also qualified psychologists. Is that not something that should be looked at?
The hon. Gentleman is right to put that on the record. I am married to a primary school teacher and, although aspects of her teacher training dealt with autism, she would probably feel that she has not been given enough support. More often than not, she will be able to say, anecdotally, “This child in the class might have autism but has not had a diagnosis yet.” So he is right to put that on the record More often than not, a lot of housing associations do not have a proper understanding of autism. A lot of families come to me and say, “I need a house with a garden so that my child can play safely”. This chicken-and-egg situation, which I see regularly, can be quite frustrating I am conscious of the time—there is a heavily subscribed debate after this one—so I will round off by saying that it is of fundamental importance that autistic people and their families are understood and welcomed in their own communities and can be supported to be as independent and active as they wish to be. I thank all hon. Members who have participated in this debate. I hope that, when we debate it next year, we will be able to celebrate some progress because, if we have learned one thing today, it is that we still have a lot further to go.
Our thoughts are with the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), who is a true champion for those with autism. I also thank the hon. Member for Bexhill and Battle (Huw Merriman) for securing today’s debate and his excellent speech, which set the tone for a very constructive debate This is a timely debate not just because it comes in advance of World Autism Awareness Week, but because this year marks the 10th anniversary of the Autism Act 2009, passed under the last Labour Government, which put a duty on Ministers to publish and regularly review their autism strategy and to produce statutory guidance to implement at a local level. We have heard from several hon. Members on the all-party group on autism, which is holding an inquiry into the Act’s implementation ahead of the Government’s review. Ahead of that formal publication, I hope that the Minister will give us the Government’s views not just on the changes that we have seen over the past 10 years, but on what more can be achieved in the years ahead I am sure that the whole House will want to thank the National Autistic Society, Autistica and Ambitious about Autism—and all the other charities that represent and serve people with autism—for the work they do, the support they give and the services that they provide to all those people. There is a charity in my constituency called The Whole Autism Family, which is run by Martin and Anne-Marie Kilgallon in Mirfield, who do phenomenal work. They have two sons with autism, but the support they provide to other families is simply phenomenal and I am very grateful to them for their work In responding for the Opposition Front-Bench team, I think it is important to note that, although I am shadow Minister for mental health, autism is not a mental health condition, as the hon. Member for Berwick-upon-Tweed (Anne-Marie Trevelyan) also mentioned. I hope that we all aspire to a society where people with autism have as good mental health as the rest of the population. Unfortunately, however, we are very far short of that aspiration. It is estimated that up to four out of five autistic people develop mental health problems such as anxiety and depression, and four out of 10 children with autism have multiple mental health problems In the worst cases, autistic people end up in mental health hospitals, which are usually not appropriate, and they are sometimes there for extended periods. The transforming care programme was aimed at tackling that problem, but we have heard evidence that it has fallen far short of its aims. The NHS long-term plan sets a target for reducing the number of autistic in-patients in mental health hospitals by 2023-24. But if we are to achieve that, there must be investment in better community mental health support that is appropriate for people with autism. The need to tackle this issue has been thrown into stark relief by the appalling cases of abuse of people with autism that have had significant media coverage in recent months, as the hon. Member for North Cornwall (Scott Mann) mentioned There are still more than 2,000 people in totally unsuitable in-patient settings, when they should be supported in the community. That is not only unconscionable; it is exorbitantly expensive, with the average package costing £3,500 a week. The Government announced last year that they would be asking the CQC to conduct a thematic review into the seclusion of people with autism in in-patient settings, but this will take far too long to tell us what we already know—that these placements should be ended. Will the Minister today finally commit to ending placements in assessment and treatment units and to working with her colleagues to provide the kind of community-based support that people with autism deserve? The Minister will also be aware of the call to reform the Mental Health Act 1983, which defines autism as a “mental disorder”, allowing autistic people to be sectioned without having a separate, treatable mental health condition. Perhaps she can tell us what plans there are to address the legislation, as well as to provide the right kind of support services Perhaps the obvious starting point regarding support for people with autism is getting a diagnosis in the first place, and a number of hon. Members have quite rightly spoken about that today. The quality standard on autism recommends a maximum three-month period between referral and the first diagnostic appointment, but it is clear that the standard is not being met anywhere near widely enough, with reports of delays of years rather than months. I have certainly experienced that issue in my constituency surgeries When I spoke on this subject a year ago, I noted that we were about to implement new standards on data for waiting times, which had been patchy until then. We are now nearly a year on, and we should therefore have data for the first full year next month, with publication due this summer. The long-term plan also contained a welcome and specific commitment to reducing diagnosis times, so I hope that the Minister will update the House on any early findings, on when the final data will be published and on the Government’s plans to make improvements Similarly, in previous debates, we have heard about the need for better data on who is being diagnosed. The National Autistic Society found that over three quarters of those using their adult services are male, and there is a concern that the lack of recognition for women with autism may be partly behind those numbers. There are also age effects, given that autism was not a recognised condition when many older people with autism were growing up. In previous debates, the Minister has said that the Department expects GPs to include autism in the primary care register and will be working with NHS Digital to achieve that. Perhaps the Minister could update us on the progress in that regard Too often, there are significant barriers to accessing the right services after diagnosis. One recurring theme is the need for better training, which the guidance states all staff should have access to, but the reality sometimes sadly falls short. Last month, the Government launched a consultation on mandatory training, which is welcome, but for this to work it must be co-designed and co-delivered by people with autism. Can the Minister tell us whether this will be the case and, perhaps more importantly, whether her Department will provide funding so that the autistic people providing their experience to this training receive a proper wage for their labour Early intervention services are key for communication and language skills, which are closely linked to life chances for people with autism. In education, too, services for children with autism and other special needs have been first in line for cuts, as we have heard from other hon. Members. With the Government taking billions out of the schools budget between 2015 and 2017, I know all too well the pressure that schools in my constituency are under. As the vast majority of school budgets are spent on staff, this is the area of greatest pressure. For example, the support staff, who are so vital to children with special educational needs, are often the first to go, and one-to-one support for children becomes impossible when the money simply is not there. Thousands of children in England with approved education, health and care plans are still receiving no provision, and that proportion has increased fivefold since 2010 If we let children with autism down in education, the impact is felt when they become adults seeking employment. My hon. Friend the Member for Bristol West (Thangam Debbonaire) spoke with great knowledge about the challenges of employment for those with autism. There is an urgent need for improved in-work support services for disabled people across the board, and the autism employment gap is even wider than the disability employment gap. Over the past 10 years, there has been no real change in the numbers of autistic people in full-time work, and the National Autistic Society found that less than a third of autistic adults are in paid work, even though more than three quarters do want to be in a job The NAS has called for an autism employment pathway, an awareness programme for employers and targets for getting people with autism in to work. I hope that the Minister can tell us the Government’s response and address points such as making sure that Jobcentre Plus staff understand autism and responding to the call for autistic people in work to be recorded in the labour force survey. Apprenticeships and other specialist schemes could also provide a route into employment, with tailored support for people with autism. Will the Minister update the House on progress in implementing the recommendations of the taskforce chaired by the hon. Member for Blackpool North and Cleveleys (Paul Maynard) and on what steps the Government have taken to expand the Disability Confident scheme Finally, there are the services aimed not just at people with autism but at the rest of us to ensure that we are aware and understand the condition. The research has long shown that most people with autism feel that their condition is not understood, as was recently highlighted by the National Autistic Society’s “Too Much Information” campaign. Only 16% of autistic people and their families think the public understand autism, and half of autistic people and their families are sometimes afraid to leave the home because they are worried about the public’s reaction. The contributions we have heard from Members across the House today show just how much more there is to be done to provide the services that people with autism need. I hope that the Government have heard that message and will now act on it.
I would like to start by adding my voice to those paying tribute to my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan). It is thanks to her pioneering autism private Member’s Bill that we now have an adult autism strategy. This year, it will be 10 years since that Bill passed into legislation as the Autism Act—10 years during which she has been the most fantastic, steadfast and passionate champion for autism and autistic people. I think that I speak on behalf of the whole House when I say that we all send our love and our thoughts both to her and her loved one. I thank my hon. Friend the Member for Bexhill and Battle (Huw Merriman) for so beautifully representing my right hon. Friend and her words today, and indeed all the other Members who have contributed to the debate, as well as the Backbench Business Committee for selecting it, particularly in the run-up to World Autism Awareness Week next month. Several Members have made some excellent points. I will try to get on to as many of them as possible in the time allowed, but I will write to anybody I miss out Much progress has been made to improve the lives of autistic people since the first cross-Government autism strategy. There is now improved diagnosis and greater awareness, and more organisations are ensuring that they make reasonable adjustments. However, 10 years on, it is very clear that there is still so much more that we can do to ensure that public services meet the needs of autistic people. The autism strategy was updated in 2014, but this year we are undertaking a comprehensive review, “Think Autism”, to ensure that it remains fit for purpose. As the hon. Member for Strangford (Jim Shannon) pointed out, it is so important that young people and their families feel supported. We want our autism strategy to work for autistic people of all ages, and that is why, working closely with the Department for Education, we will be extending our strategy to include children. That refreshed cross-Government strategy will be published towards the end of this year People with a learning disability and autistic people continue to face significant health inequalities. This must be addressed. It is absolutely that right that learning disability and autism are both now clinical priorities in the NHS long-term plan. Autistic people must be at the heart of any improvements we make to their care and support. That is why last week the Government launched a national call for evidence to hear the views of autistic people, their families and their carers, as well as those of professionals. We want to know what is working, but also what needs to be done to transform care and support. In the week since that call for evidence, we have already had 875 responses. I would urge hon. Members across the House to share our call for evidence in their constituencies and via their social media networks I am delighted that so many Members across the House have taken the opportunity to highlight some of the amazing work and fantastic organisations in their communities. Autism-friendly communities such as the one in Bodmin that my hon. Friend the Member for North Cornwall (Scott Mann) spoke about—he wins the prize for the most intriguingly named constituent: Tigger Pritchard—sound like a way to support people much better As many Members have said, raising awareness is not enough. It is acting on that awareness that makes a real difference. We recently launched a consultation on mandatory training on learning disability and autism for health and care staff and will report the findings in the summer. Crucially, that applies to not only medical professionals but all health and care staff. For example, we all know that a negative encounter with a receptionist or front of house staff can immeasurably change our experience or perception of services. Work is under way in other sectors such as education, employment, prisons and transport to raise awareness of autism and adjust services to make them more accessible. The hon. Member for Liverpool, West Derby (Stephen Twigg) and many others talked about the importance of early identification and timely and accurate diagnosis of autism. No one should have to face a long wait for an autism diagnosis, but we hear far too often that the NICE recommendation of a wait of no more than three months is exceeded. There is a geographical disparity, and this postcode lottery must end. The NHS long-term plan commits to testing and implementing the most effective ways to reduce those waiting times. Critically, we are collecting data to support that, which will be published later this year for the first time. This will mean that each area can be held to account and action can be taken As my hon. Friend the Member for Copeland (Trudy Harrison) said, it is not just getting a timely diagnosis that matters but having timely information, support and services after that. This summer there will be new and improved guidance for health and care commissioners and a best practice toolkit, to improve diagnosis and post-diagnosis services for autistic people. Health Education England is also developing an autism core skills and competency framework for health and care staff and staff in organisations with public-facing responsibilities My hon. Friend the Member for Dudley South (Mike Wood) and a number of other Members highlighted the particular challenges that autistic children face in schools. My hon. Friend the Member for Bexhill and Battle said that children have to fail before they get the support they need, and that is why including children and young people in the autism strategy for the first time is so important The SEND reforms that the Government introduced were intended to support all young people to achieve their potential in education. Since 2014, we have invested £391 million to help implement those reforms, but we know that there is more to do. We have funded the Autism Education Trust to provide autism awareness training for more than 195,000 school and college staff—not just teachers, but administrators and support workers—which I hope will go some way to helping diagnose women and girls, who we know are very much under-represented in the diagnosis statistics. We also know that a disproportionate number of autistic children are excluded from school; my hon. Friend the Member for Dudley South mentioned that. Edward Timpson is currently reviewing how schools use exclusions, so that we can better understand why that is the case and what we can do about it The hon. Member for Bristol West (Thangam Debbonaire) and many other Members highlighted the need to do more to support autistic people into employment. It is a lost opportunity all round that only a relatively small number of autistic people are in work either full time or part time. Through the Disability Confident scheme, we are helping employers to promote the talents and abilities of autistic people, and Access to Work has a hidden impairments group that gives guidance to employers My hon. Friend the Member for Torbay (Kevin Foster) spoke about the huge value of these people in the workplace. My hon. Friend the Member for Berwick-upon-Tweed (Anne-Marie Trevelyan) told me something I did not know—that autism spectrum automatically disbars someone from the military. I will be raising that with the Minister for the Armed Forces, not least because I fear her infinitely more than I fear the Minister My hon. Friend the Member for North Cornwall, the hon. Member for Dulwich and West Norwood (Helen Hayes) and many others spoke about some of the tragic cases where autistic individuals have not received the right care and support in mental health in-patient settings. We are committed to learning from those and working harder than ever to improve how care and support is provided. Some people will need access to time-limited in-patient services, but this should be as close to home as possible for as short a time as possible, with discharge plans in place. When people do need to go into hospital, they must be safe from harm and abuse, and they should never be subject to inappropriate or restrictive practices The hon. Member for Cardiff West (Kevin Brennan) and my hon. Friend the Member for Henley (John Howell) spoke about improving the criminal justice system. In the initial police learning and development programme, police officers are already given training, and many police forces have developed their own. Liaison and diversion schemes are being rolled out with 100% coverage expected by 2021. My hon. Friend the Member for Berwick-upon-Tweed also spoke about how autism should not be classed as a mental disorder. We will be keeping this very closely under review, as she made a very good point The Government are fully committed to improving the lives of autistic people, but there is much more to be done, and Autism Awareness Week is a great reminder of that. Our refreshed cross-Government autism strategy, which we will publish later this year, will help to deliver this and provide the route map for the years ahead.
Thank you for chairing us this afternoon, Madam Deputy Speaker I have heard it said that Parliament is not delivering for the people. May I send a message and invite everybody here to join me in sending a message to people with autism or Asperger’s and their families? With the voices of my right hon. Friend the Member for Chesham and Amersham (Dame Cheryl Gillan), the hon. Member for Bristol West (Thangam Debbonaire), my hon. Friend the Member for North Cornwall (Scott Mann), the hon. Member for Liverpool, West Derby (Stephen Twigg), my hon. Friend the Member for Dudley South (Mike Wood), the hon. Member for Dulwich and West Norwood (Helen Hayes), my hon. Friend the Member for Berwick-upon-Tweed (Anne-Marie Trevelyan), the hon. Member for Cardiff West (Kevin Brennan), my hon. Friend the Member for Henley (John Howell), the hon. Member for Strangford (Jim Shannon), my hon. Friends the Members for Torbay (Kevin Foster) and for Copeland (Trudy Harrison), the hon. Members for Glasgow East (David Linden) and for Dewsbury (Paula Sherriff), my hon. Friend the Minister for Care—I thank the Minister for all her commitments this afternoon—and the many others who intervened, the message is that we understand the challenges autistic people have to go through every day, and we will be by your side and will do our best to make sure that you have the services you deserve Question put and agreed to. Resolved, That this House has considered services for people with autism.
I am sure that the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan) would have been very proud of all the contributions to the debate today, and I hope that the hon. Member for Bexhill and Battle (Huw Merriman) will send her our best wishes.
On a point of order, Madam Deputy Speaker. Can you advise me, first, how we can get on the record that over 1 million people have now signed the petition calling for the revocation of article 50 as the best way to stop the Brexit madness that seems to be engulfing the country, and secondly, whether you have had any indication from the Leader of the House—she said this morning that if it got to 17.5 million signatures, she would start to consider it seriously, so only 16.5 million more are now needed—that she is planning to make a statement to the House?
I thank the hon. Gentleman for his point of order. I have not received any indication from the Leader of the House that she intends to come here today. He will know that, under the e-petitions system, the Petitions Committee will consider any petition that receives more than 100,000 signatures for a debate. It is a matter for that Committee when such a debate is scheduled. I am sure it will be looking at this petition in due course, and I am also sure there will be ample opportunities in the coming days for the hon. Gentleman to make his views known. In the meantime, those on the Treasury Bench will have heard his request.
I beg to move, That this House believes that NICE appraisal processes do not properly address the medical treatment needs of people with rare diseases such as muscular dystrophy, phenylketonuria and cystic fibrosis; and calls on NICE to urgently review the appraisal process I thank my hon. Friend the Member for North Tyneside (Mary Glindon), who is chair of the all-party group on muscular dystrophy, and the hon. Member for Strangford (Jim Shannon), who is chair of the all-party group on cystic fibrosis, for their help in securing this debate My constituent Archie McGovern is 12 years old. He is bright and lively, and full of beans now, but it has not always been like that way because Archie has PKU— phenylketonuria. Putting it simply, PKU is a genetic condition that means Archie and others are unable to handle phenylalanine, which is found in protein—so no meat, no fish and no dairy products. There is a whole range of other things that we would not think had protein in them: the list is endless. On top of that, he has to take a protein substitute drink—if we can call it that, as it is very unpleasant—to keep the balance right At present PKU is not curable, and a hugely restrictive diet is the only way of controlling the condition throughout childhood and adult life. The condition is picked up by the pinprick test at birth, and for those identified as having PKU that is the start of a difficult lifetime of dietary control. For children that is especially difficult, but it is also very important because failure to control the condition can lead to serious neurological problems That is how it was for Archie until quite recently, but there is a treatment that can help to control PKU. It is called Kuvan, and although it was licensed 10 years ago and is widely available in many countries in Europe, and further afield, it is not available to patients in the UK. Not everyone with PKU responds to Kuvan, but it is believed that more than 20% of people will respond well and see a significant improvement in their life.
The hon. Lady makes an important point about Kuvan and PKU. As she will know, last year I and other Members—including the hon. Member for Dudley North (Ian Austin)—took part in the MPs’ PKU diet challenge, so I am well aware of the restricted diet that is required for those who suffer from that condition. The way that NICE evaluates Kuvan does not take into account the social costs associated with the alternative treatment for PKU. That highly restrictive diet impacts on families and wider society, and NICE should consider that point.
Like the hon. Gentleman, I took part in the PKU diet for a day challenge. It was indeed very restrictive, even though I knew it was only for one day Archie is one of those who responds well to Kuvan, and last year, his parents took the difficult decision to pay to buy him the drug. That took a great deal of soul searching on their behalf, and it cost them dear—£25,000 a year, even though Archie is currently on just half a dose. They know that for many people with PKU, or for parents with more than one child who has PKU, it is simply not possible to self-fund, and they are acutely conscious of the unfairness of that. The difference that Kuvan has made to Archie is real and significant: increased concentration and energy, so that he can make the best of his education; no recurring mouth ulcers, which were a real problem; and a chance substantially to increase the number of exchanges he can have, and eat a more normal diet. For Archie, Kuvan has made a real difference Archie’s case, and those of many others in other constituencies, prompted us to form the all-party group on phenylketonuria, and to consider how Kuvan could be made available to those who would benefit from it. Nearly 10 years after Kuvan was approved, that treatment does not seem to have been an appraised, and in England it is still not available on the NHS. Since we set up the group, there has been a move for Kuvan to be appraised by NICE, and discussions have been held with NHS England about a managed access agreement. We were disappointed to learn just before Christmas that no agreement had been reached on that managed access agreement, and that the NICE appraisal was to be via the single technology appraisal route, and not the highly specialised technologies programme. I understand that following a legal challenge, the Department of Health and Social Care is again considering the appropriate appraisal route, and the all-party group has made representations on that point When talking about the NICE appraisal system it is easy to get lost in technical details—QALYs, and everything else, that means nothing to people on the street—but what really concerns people is whether or not there is a fair chance that the drugs they need will be fairly assessed and made available on the NHS.
I thank my hon. Friend for securing this debate. One of my constituents suffers from Batten disease and is receiving cerliponase alfa on compassionate grounds. However, NICE will not now recommend that treatment, which in part is due to cost. Does my hon. Friend share my view that allowing patients on to clinical trials when there is no funding to deliver the treatment, places them and their families in an incredibly difficult and uncertain position regarding their future?
I certainly agree, and such things happen too often. We need a system that properly evaluates those drugs.
I have certainly found that NICE sometimes says that the pool of people is not big enough to evaluate, but the clue is in the title: these are rare diseases. NICE cannot carry on doing that, particularly in cases where it is clear that the drug has a really positive effect.
I agree with my right hon. Friend. Indeed, that is the burden of my speech As I was saying, I am not going to get into the fine detail of the process. It seemed to us in the all-party group that many conditions, as my hon. Friends have said, face the same problems. The all-party groups for muscular dystrophy and for cystic fibrosis are two that come to mind, but there are many other rare diseases, as we have heard, that do not have all-party groups but face exactly the same difficulties. Since this debate was announced, some other organisations have contacted me to ask me to make sure that we do not forget their concerns We found that there are a number of aspects of the NICE appraisal system that are problematic in assessing Kuvan and many other rare drugs. The existence of just two appraisal routes for treatments to be assessed by NICE results in the likelihood of two or more treatments being stuck in the middle by not meeting the restrictive criteria of the highly specialised technology route and therefore being assessed under a single technology appraisal route. Some of them are rare but not rare enough. As we have heard, the majority of treatments for rare diseases are likely to be assessed within the single technology appraisal, which is designed for non-rare treatments. This impacts on both the cost threshold and the approach to evidence, which are all designed for more common diseases On lifelong chronic conditions, NICE’s approach values the lifelong cost of treatments. It looks for near future benefits as well. That means it is difficult for chronic diseases such as PKU and treatments that produce lifetime and life-enhancing effects to get access to new treatments. NICE cost appraisals assume that patents do not expire. NICE will assume the existing price of the drug will stay the same. That is illogical as, particularly with older drugs such as Kuvan, the drug will soon go off-patent. This affects the benefits assessment. On non-health costs, NICE performs its calculations based no costs paid and saved by the NHS. That ignores the wider cost to society and individuals caused by diseases like PKU I do not seek to criticise NICE staff. They work within a system that we have given them, but it is clear from the many questions to Ministers, debates in this Chamber and in Westminster Hall, the creation of all-party groups, and correspondence with Ministers about individual cases that there is a very real issue here which must be addressed. That is why we are asking, in this motion, for NICE to review its processes to reflect the current issues we face Many drug companies have been in touch since this debate was granted to send me briefings. They have been keen to explain their side of the argument and to point out what they see as the problems in the NICE appraisal process for their drugs. There is some overlap with patient concerns, but I am here today to speak on behalf of the community of people with rare diseases, not on behalf of the drug companies. Let me be clear, the fact that this debate is about NICE appraisal processes does not excuse the pharmaceutical companies from their responsibilities. There is a balance to be struck between their need to recover the cost of the development of drugs and make a reasonable profit, and a huge responsibility on them to make their drugs affordable for our NHS In this debate, I have focused on PKU and Kuvan. With another drug treatment for PKU on the horizon, Pegvaliase, there is a real worry that even with a drug that may produce really life-changing results for a wider group of patients, those with PKU will again be left without the treatment they need, even when it exists. There are treatments for other rare diseases, too: Spinraza for spinal muscular atrophy and Orkambi for cystic fibrosis, which are not only life-improving but life-extending This is quite simple. There are drugs available that can drastically improve the lives of those affected by rare diseases. When I hear that NICE’s appraisal process is an obstacle to improving lives, I feel really angry. We are reducing the lives of children and adults to a cost-effectiveness analysis. We need to find a way forward to amend the appraisal system so that we do not let people fall through the cracks or fall behind. The drug companies must also do their bit to ensure that their drugs are affordable for the NHS, especially when early access via a managed access agreement is being discussed That is why today we are calling on NICE to review its appraisal processes and make the necessary changes to stop people falling through the cracks and make available these drugs, which can make such a difference to patients—to people such as my constituent Archie McGovern, whose mum Barbara set me on this path as a new MP.
Order. There is obviously some pressure on time, so we will start with an eight-minute time limit.
I am delighted to support the motion standing in the names of the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon). This is a life-changing issue for thousands of our fellow citizens who simply do not have time on their side. A number of my constituents, including the parents of my young constituents battling with cystic fibrosis, have brought to my attention the weaknesses in the current NICE appraisal model. I look forward to reinforcing the arguments of the hon. Member for Blaydon with some details that they have provided NICE’s appraisal model has led to a horrendous block on life-changing cystic fibrosis drugs being made available to those young people. Vertex’s three approved medicines and investigational triple regimen may be able to treat the underlying cause of cystic fibrosis for up to 90% of patients. There is currently no cure for cystic fibrosis, and half of people with the disease will die before they are 31. I recommend that my hon. Friend the Minister instructs NICE to review its current single technology appraisal, which is used to appraise inherited rare diseases, in order to come to a solution that can work best for all parties. The current model, which specifically affects Vertex drugs such as Orkambi, is fundamentally flawed. It directly affects the lives of not only my young constituents suffering from cystic fibrosis, but those with spinal muscular atrophy, Batten disease and PKU, to name but a few NICE’s single technology appraisal has been used for the past 20 years, and although it served as an important new way to assess the cost-effectiveness of new treatments, it has failed to keep pace with advances in science. No model should be biased towards favouring specific medicines, but there remains an unwillingness to accept that new precision medicines that treat the underlying cause of disease and have the potential to extend life are fundamentally different from the medicines that existed when NICE’s processes were first developed. The idea of working on an innovative new model for appraising rare diseases is also supported by the Genetic Alliance When performing a single technology appraisal, NICE applies the same methodology and cost-effectiveness criteria regardless of whether it is appraising a single-use medicine for an acute condition or a lifetime medicine for an inherited, progressive, incurable, life-limiting disease. The current evaluation process turns on the incremental cost-efficiency ratio, measured in quality-adjusted life years. With acute conditions resulting from shorter-term treatment, the ICER is moderated even if the drug is very costly. Conversely, with chronic and lifelong conditions, the drug must be taken every day for life, and the cost of lifelong treatment prevents downward moderation of the ICER. That means that, when evaluating medicines that extend life, those that treat conditions from which patients would die within a short period are favoured over those that would extend life far into the future That unfairness is doubly compounded by the fact that, when computing the number of quality-adjusted life years attributable to a treatment, NICE usually applies a “discount rate” of 3.5% per annum, based on the Treasury’s Green Book, on both the costs and health effects of the medicine by reference to how far into the future those life years will be added to the patient’s life. In essence, the longer a patient lives, the more expensive they are to the system and the higher the cost per quality-adjusted life year Let me give an example. If a treatment were projected to extend the life expectancy of a six-year-old cystic fibrosis patient from 47 to 57 years, the “present value” of those additional 10 years would be less than two once they were discounted. By comparison, an oncological orphan medicinal product may add five life years, starting immediately, to a patient’s life expectancy, so discounting would reduce those five years to 4.66 for the purpose of calculating quality-adjusted life years. That approach cruelly fails to account for the fact that every year of additional survival, regardless of whether it is gained in the short or the long term, will be valued equally in the mind of a cystic fibrosis patient and his or her family To add insult to injury, NICE currently does not take into account the fact that when medicines lose their market exclusivity after patent expiry, their cost to the NHS falls dramatically, typically by 80% to 90%. It is unrealistic to assume that a medicine would remain at its currently listed price over the entire model horizon, particularly when that can be upwards of 40 years. There is no reason why NICE could not model the effect of a post-patent expiry price reduction by reference to available evidence from the pharmaceutical market. That is yet another example of NICE’s discrimination against treatments for chronic and incurable conditions in favour of those for acute conditions Finally, while NICE recognises that medicines for very rare diseases—ultra-orphan medicines—need a higher threshold and more discretion in the way in which they are appraised, it does not allow cystic fibrosis medicines to be judged against that threshold. That is because, although cystic fibrosis is a rare disease globally, its prevalence in England is such that NICE insists that it is appraised via the conventional approach Vertex is not the only manufacturer of precision medicines for rare diseases to experience challenges with NICE. Both the Bioindustry Association and the Association of the British Pharmaceutical Industry have, on behalf of their members, repeatedly highlighted the need for NICE to be reformed, to “take a broad view of the value of new treatments and innovations to the health service”, and to incorporate a wider range of factors and flexibilities, beyond the standard cost per quality-adjusted life year gained. It is right for us to ensure that NICE processes are modern and up to date with the evolution of precision medicines My constituent Sharon Cranfield is a bit disappointed with a letter sent to the Minister by the Chairman of the Health Committee, outlining the conclusions of the Committee’s public hearing on 8 March. She says that the points that I had raised on her behalf “appear not to have been considered and the findings of the Committee seem to lie with continuing to defend the NICE model that has been used for the last 20 years and an unwillingness to accept that they need to be re-evaluated to reflect the current and near term developments in precision medicines.” I understand that the Committee may have advisers who were associated with the setting up of NICE. I think that Ministers, NICE, and everyone who is engaged in this should look forward to a model that will actually work for the people whom we represent NICE must re-evaluate the way in which it values rare disease medicines. I sincerely hope that following today’s debate, it will do more to achieve alignment on value, evidence and price for the sake of patients, and will address, once and for all, the limitations of the current NICE STA process for diseases such as cystic fibrosis. That would also benefit all the other patients who already suffer enough after being diagnosed with a rare disease.
It is an honour to follow the hon. Member for Reigate (Crispin Blunt) I thank the Backbench Business Committee for agreeing to the debate. I also congratulate my hon. Friend the Member for Blaydon (Liz Twist), who is, as she said, my fellow member of the all-party parliamentary group for muscular dystrophy. She made a lucid and compelling case for the review of the NICE appraisal process I have had the honour of chairing the APPG for several years. It works closely with our secretariat, Muscular Dystrophy UK, and with patients and carers, on a number of issues that affect the lives of those with muscular dystrophy and other neuromuscular conditions. Perhaps one of the most important issues that we consider is the ability of patients to access treatments for their conditions For more than a year, access to the drug Spinraza, manufactured by the company Biogen, has been the focus of the APPG’s concerns about, and frustrations with, the NICE appraisal process. Spinraza is the first and only treatment for patients with spinal muscular atrophy, a rare inherited neuromuscular condition that leads to the gradual loss of the ability to walk, move, breathe and swallow. It currently affects about 2,000 adults and children in the UK. There are several types of SMA, with type 1 being the most severe, usually resulting in the death of infants before they reach their second birthday. However, clinical trials of Spinraza have had amazing results for many of the patients who have tried it. It has been so positive for children with type 1 that over two years ago Biogen opened its global expanded access programme to provide the drug free to type 1 patients Spinraza is currently available across 24 European countries and in the US, but for patients in this country access to the drug is being held up by lengthy delays to the NICE appraisal process.
Does my hon. Friend agree that the hon. Member for Reigate (Crispin Blunt) is right that there needs to be a new model, and more importantly that something must be done about the cost of drugs? We cannot carry on with the escalation of the cost of these drugs because, as the hon. Gentleman said, that affects many families in different ways.
That is true, and I think it will be highlighted again and again in this debate The delay for patients in this country is made all the more frustrating because the Scottish Medicines Consortium approved Spinraza for children with SMA type 1 last May, and it now has a new ultra-orphan pathway and has speedily reassessed Spinraza, and as a result children and adults with SMA types 2 and 3 will be able to access the drug from next month In England the Spinraza appraisal has already been going on for 14 months. In January last year NICE announced that the pathway for the drug would, sadly, be the single technology appraisal, used for common diseases, rather than the highly specialised technology appraisal, which has been spoken about and is used for rare conditions. On 14 August, all hopes were shattered when NICE announced that it did not recommend funding by the NHS as the clinical effectiveness of the drug was not proven and the price was too high NICE launched a consultation and held a committee meeting in October to review all responses. There was still no progress for patients. Then, following a previous announcement, on 1 November Biogen closed the expanded access programme for type 1 to all new infants, so although 80 children remain on the programme, any child born after that date with type 1 has no access to this life-saving drug. The process drags on, and NICE had its third committee meeting earlier this month, but as yet no information has been published Biogen maintains that the STA process is not appropriate for rare disease medicines, because the smaller patient populations in rare diseases make it inappropriate to expect treatments to achieve the same cost-effectiveness thresholds as medicines in disease areas with much larger patient populations. It has also pointed out that it is very difficult to measure the quality of life in a young paediatric population. However, that is a major determining factor in the STA process, so it is a stumbling block in approving Spinraza. The company still hopes that a managed access agreement can be reached with NICE and NHS England The truth is that NICE’s emphasis on cost-effectiveness stands in contrast to the focus on more flexibility and data gathering for future review, which has allowed Spinraza to be approved in Scotland and across Europe. A recent report by MAP BioPharma, “Access to orphan medicines”, highlighted that 75% of rare disease medicines recommended by NICE through an STA between 2013 and 2017 were due largely to rare cancer drugs that are covered by the cancer drugs fund, and none of the only six non-cancer orphan drugs reviewed by NICE through an STA has received a recommendation in line with full marketing authorisation The report makes five recommendations for the NICE STA methods review: making changes to the evidence requirements for orphan medicines; drawing from the HST methodology to consider introducing a sliding incremental cost-effectiveness ratio up to £100,000; considering adapting the evidence review group for orphan medicines; embedding formal opportunities for negotiation between companies and NHS England; and considering interim recommendations in line with the cancer drugs fund and the new Scottish ultra-orphan pathway. MAP BioPharma points out that those adaptations would help to level the playing field so that patients, clinicians and companies could be sure that all treatments for rare diseases would be considered under a fair appraisal and that access would not be held back as a result of treatments being referred for an inappropriate appraisal. I hope that those recommendations will be given due consideration by NICE, NHS England and the Department Meanwhile, for those awaiting a decision on Spinraza, the anxiety continues. They include families such as that of my seven-year-old constituent, Sam McKie, who has type 2 SMA. Sam loves playing wheelchair football and has played since he was three. He now plays for the Newcastle Magpies wheelchair championship team and is as good as many of the adult players. In fact, he is so good that, in November, the Newcastle United Foundation named him as its disability player of the year. Sam’s dad, Gary, wrote to me, and his words reflect the views of everyone affected by SMA. He said that “children are facing an agonising and uncertain wait for approval whilst their condition deteriorates. Gaining early access to this drug could see Sam get stronger and gain new abilities. The SMA community would love to be able to access this drug to give our babies and children a chance, a chance they surely deserve. This drug is available now, and timely procedures are stopping our children from accessing it, this is wrong. Please help us.” Will the Minister hear Gary’s words? Will he take action to ensure that delays do not happen in future? And will he work with Muscular Dystrophy UK and other charities towards making NICE take on board MAP’s recommendations, to help to create a new and fairer system, like that in Scotland, that will deliver for patients like Sam and, as Gary McKie says, give them the “chance they surely deserve”?
It is an honour to follow my hon. Friend the Member for North Tyneside (Mary Glindon), and I also thank my hon. Friend the Member for Blaydon (Liz Twist) for bringing the debate to the House I first heard of the drug Spinraza last year when Katie Prescott contacted me about her 10-year-old daughter, Heidi. She wrote: “I have a daughter, Heidi, with a rare muscle wasting disease called Spinal Muscular Atrophy (SMA). SMA ranges from the very severe type 1 through to type 4. Heidi has type 3 and she is fast losing the ability to walk. She is 10 years old and it’s a devastating prospect for her. For the most severe cases of SMA, life expectancy is only 2 years without access to this drug.” There is a treatment available for SMA, and it is called Spinraza. It is the one and only available treatment for SMA, and 22 other countries, including Scotland, have approved it. However, NICE is recommending that NHS England should not fund Spinraza for any types of SMA, meaning that thousands of people in the UK with SMA are left without a treatment. This is practically a death sentence for babies diagnosed with type 1, and it means that type 2 and type 3 children are destined for a life of deterioration. The issue is that NHS England and Biogen cannot agree on the costs. We need the Government, NHS England and Biogen to sit down and negotiate an agreement that has the SMA community at its heart In January 2019, I wrote to the Health Secretary about this. He replied: “NICE is an independent body, and it would be inappropriate for me to comment on its guidance” When I wrote to NICE for clarification, it said: “I fully accept that we, the company and NHS England have a responsibility to bring this matter to a conclusion quickly. We are working hard to do this through discussions with the company and I am hopeful of reaching a positive outcome.” I also asked the Prime Minister this question: “Why can this treatment not be accessible to my constituent Heidi and other children in England with this disease?”—[Official Report, 20 February 2019; Vol. 654, c. 1462.] She answered that the next meeting between the parties would take place in March. Since then NICE, NHS England and Biogen have met, on 6 March in Manchester, and we now await their next judgment. That comes after 14 months of appraisals, with months between the stages of the negotiation process. What is it about this country that makes it so different from Scotland and the 22 other countries in Europe that have approved the drug? What have they done to be able to do that? How have they negotiated it When a child is born with a condition such as SMA, there is hope in every parent’s heart that a cure will be found—that a new drug will be developed to treat it. This is an example of that, but the drug has been denied to children suffering with SMA, and we must find a mechanism to resolve the problems. I understand that there are structural issues within NICE, which means that the treatments of conditions such as SMA end up being assessed in the same way as more common conditions, therefore making it extremely difficult for treatments to be assessed as being cost-effective. In the meantime, Heidi’s health continues to deteriorate. When I met her recently in my office, I was deeply impressed with her bravery and optimism, but her mother said to me: “It is very frustrating that still no decision has been made. Heidi cannot walk unaided anymore and even then can only take a few steps. To know there is something that can help her, but she can’t access it, is very difficult and Heidi finds that hard to deal with too.” Up and down the country, families like Heidi’s are fighting for treatment. Surely NHS England, NICE and the company have a duty of care and a moral obligation to give treatment to patients like Heidi when it is available. We must remember that there are human beings behind the statistics—caring families who are suffering because a medicine has been denied in this country.
I will be brief because I have spoken on this topic many times, specifically about cystic fibrosis, but before I get on to that I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on her speech about PKU. I popped into the PKU drop-in event a few months ago purely by accident when I was doing one of those classic MP things where we are asked to go here, there and everywhere to be photographed holding up a sign or wearing a silly hat. I knew nothing about PKU, but I talked to an 11-year-old boy there about his diet. I am somebody who chooses to have a fairly restrictive diet in that I do not eat meat, dairy or fish, but I look for protein alternatives, and I was struck by the sheer difficulty that the boy has in functioning and by the fact that he is unable to enjoy the normal life of an 11-year-old. My heart went out to him, and I do not need to add any more, because my hon. Friend made such an excellent speech We have also had excellent speeches about the difficulties of obtaining Spinraza. I do not claim to be an expert, as some other Members are, but constituents have been in touch with me with similar problems. I would therefore support any efforts to get the drug approved, because that would make a huge difference to their lives As I said, I am here to talk about cystic fibrosis, and I have a personal interest in that my 14-year-old niece Maisie has CF. She must be the most mentioned niece in Parliament, because she gets name-checked quite a lot. Before I talk about Maisie, I want to mention the recent evidence to the Health and Social Care Committee from Oli Rayner, who lives with cystic fibrosis. He has just turned 40 and had a lung transport around 18 months ago, so he is at the healthier end of the spectrum, and he talked about being quite lucky until he reached his thirties, when his health started to deteriorate However, many cystic fibrosis patients are not as lucky. My constituent Lee Partridge lost both his daughters within eight months when they were both in their late teens, and it is common for people to start to deteriorate when they reach their teens. Luckily, my niece is very much at the healthier end of the spectrum, but that does not influence my judgment; I want to make the case for Orkambi to be available not just for her when it is needed, but for everybody else with the condition I have been trying to get my head around quality-adjusted life years, how the calculations are made, whether NHS England is doing the right thing and whether NICE is using the right sorts of calculations compared with other countries. NICE says the calculations factor in societal benefits, but it is not clear how they do that The hon. Member for Reigate (Crispin Blunt), who made an excellent speech, spoke about the cost of hospital treatment to society as a whole. If a person has to go into hospital several times a year, there is the cost of care, but there is also the cost of lost work time, the cost of care by family members and even the cost of transportation to hospital if they live in a rural area. There are so many factors. Although NICE says it takes those things into account, I cannot quite see them. Was it Hugh Dalton or Clement Attlee who was called a “desiccated calculating machine”? Anyway, the system seems to be based on desiccated calculations It may be incredibly naive of me, but why cannot the system just think of the impact on people’s lives and of the hell they are going through? It is incredibly difficult for teenagers to come to terms with discovering that they have a life-limiting condition, and there is also the issue of the availability of mental health support and counselling It is striking that everyone who gave evidence to the Health and Social Care Committee said that the drugs work. There is no question but that this would be of benefit to people. Kalydeco, the first drug, helped only 5% of patients, and it was funded in part because not many people would benefit and, therefore, the costs were lower. We now have Orkambi, and there will soon be a successor that will benefit about 40% of patients. For the future we are looking at triple therapies that will cover about 90% of the cystic fibrosis community. If 90% of people can benefit, of course the overall cost will go up, but the decision should not be made on the basis that we fund one thing because not many people will benefit I am concerned that Vertex and other companies would be deterred from exploring further therapies and treatments if they cannot get a commercial deal. The line that jumps out of the Health and Social Care Committee’s letter to Vertex, which it wrote shortly after the meeting, is: “Vertex appears to have decided on the pricing of its therapies on the basis of the return it wants to make, rather than the value which they bring. NHS England is right to continue to take the wider patient population for whom it is responsible into account.” The Minister has previously responded to such debates, so can we have an update on where the conversations have got with Vertex, including the Secretary of State’s meeting? There are so many cystic fibrosis patients waiting to hear the outcome. Last time I looked, the petition was up to about 80,000 signatures. Can we try to get some answers soon?
I am sure hon. Members will not be surprised to hear me talk again about baby Maryam, my seven-month-old constituent with spinal muscular atrophy type 1. Without treatment, Maryam will have only a few more months to live. She is waiting for NICE to announce a decision to allow access to Spinraza, the drug that she and other babies with the condition so desperately need I start by thanking my hon. Friend the Member for Blaydon (Liz Twist) for securing this important debate; the Daily Mirror, especially Pippa Crerar, for telling the stories of SMA families; the Newham Recorder, the campaigning newspaper, for its continued coverage and encouragement; and the amazing members of the local community in West Ham for their support. Councillor Mas Patel has been brilliant, as has Kevin White and many others who have taken the plight of this little baby into their hearts Most of all, I pay tribute to Shakil, Maryam’s father, and all Maryam’s family who have steadfastly campaigned despite knowing that, when we finally get access to Spinraza in England, it could so easily be too late for Maryam As we know, SMA1 is an awful disease. It is a progressive muscle-wasting condition, and for a baby it causes difficulties with breathing, swallowing and gaining weight. Babies with SMA1 may not even be able to cry aloud. Spinraza is an effective treatment for SMA. With this treatment, babies and children are living longer; they are even crawling and walking. I am told that by last August, when NICE first met to consider funding Spinraza on the NHS, none of the babies who had been treated with it in the UK had died as a direct result of their SMA. The drug was so effective that the trials stopped early, yet NICE refused to approve Spinraza at that August meeting, or at the second meeting in October or in November In November, the expanded access programme, which allowed treatment with Spinraza while negotiations were ongoing, was closed—Biogen, the drug company that developed Spinraza, closed it. So when Maryam was diagnosed in December last year, she had no access to this drug. Even if it could have been afforded privately and even if my community in West Ham had fundraised for it—I can tell Members that an awful lot of people have wanted to do just that—she could not have got it. We are not talking about huge numbers; we are talking about fewer than 100 babies a year. Treating this condition should not break our bank—it could not, surely NICE met again two weeks ago—we held a vigil while it was making its decision—but I am told it could be three or more weeks yet before that decision is known. This is callous. Making families, making Maryam and making the other babies wait this long is callous. The NICE approvals process for Spinraza has now taken 14 months. That is longer than many of the babies with SMA1 can be expected to live without the treatment. At the same time, agreements have been reached on Spinraza in the United States and in 25 European countries, including Scotland, Germany, Italy, Lithuania and Romania NICE has failed Maryam and all the other babies with SMA, but others are culpable, too. The closure of the access programme no doubt saved Biogen some money, but I am sure that it was closed to increase pressure on NICE as well. I cannot say that that is definitely true, but what I will say is that if it is true, the suffering of tiny babies, and the pain and suffering of their families, too, has been used in the service and pursuit of profits. I now believe that our whole system of for-profit medical research combined with public healthcare encourages this kind of brinksmanship, it encourages delaying tactics and it encourages the exploitation of sick children and their families Let us also consider the actions or inaction of the Government. I am sure hon. Members will recall how in the spring statement the Chancellor talked of a “proud, successful, outward-looking nation, with no limit to our ambition and no boundaries to what we can achieve.”—[Official Report, 13 March 2019; Vol. 656, c. 352.] He bragged about “the single largest cash commitment ever made by a peacetime British Government”.—[Official Report, 13 March 2019; Vol. 656, c. 346.] This was for the NHS. Surely we can afford to help these babies, too. Currently, we are the fifth richest country in the world, yet we are withholding vital medical treatment from babies. This is medicine that 25 other European countries, including some much poorer than we are, are willing to provide. What does that say about us? What does that say about our values? What kind of a country have we become? I have asked the Prime Minister to act—twice. I have asked the Health Secretary to act. As far as I can see, nothing has happened. I hope that Conservative Members will forgive me when I say that I thought the Prime Minister’s response to me last week was cold; it was more about defending an outdated process than about understanding and empathising with the desperate plight of Maryam and her family. Let us remember that 25 European countries already have access to this drug, We do not, yet it seems to be nothing to do with the Prime Minister.
The hon. Lady is making a good and powerful speech. Two of my constituents, Mark and Panna Wilson, are in a situation similar to that of her constituents: their son Aadi is only three years old and is regressing every day because he, too, has SMA, which is a terrible condition. They told me that “without access to new treatments, each and every day is a step, not towards an exciting future, but towards a painful and dark place.” The hon. Lady is right, and I hope that we will find a new route to the approval of Spinraza in this country. The route it is currently going through is intended for much more generic medicines and it has not been put through the route for rare medicines. We need either to put it through the route for rare medicines or to find or invent a new mechanism so that we can get treatment for these people. As she points out, this is a rich country: we must be able to save these babies and toddlers.
The hon. Gentleman is absolutely right. This is a political issue—what we are discussing today is political. It is about which of our constituents get access to which medicines, and when; who our public healthcare service helps with our public money; and who we allow to die without help Members on both sides of the Chamber have recently urged the Government to use their Crown use licensing powers in the case of Orkambi. Those powers can get around medicine patents when pharmaceutical companies are simply refusing to deal honestly with the NHS, and they are an option. There are always options for the Government if they wish to use them, but they seem to be content with voicing frustration. They do not do anything—they will not even threaten to do anything that might help. If the Patents Act 2004 is not working, as Ministers have said, we need to do something to replace it. Maryam’s family and others want action now. They need Spinraza now; when will they get it?
It is a pleasure to follow my hon. Friend the Member for West Ham (Lyn Brown), who made her case with great power and passion. I congratulate my hon. Friends the Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon) on securing this important and timely debate Until recently, I had the pleasure of chairing the all-party group on rare, genetic and undiagnosed conditions, which receives secretariat support from Genetic Alliance UK. The all-party group aims to raise awareness in Parliament about such conditions and to ensure that patients and families can access appropriate care and support. My hon. Friend the Member for Hornsey and Wood Green (Catherine West) has taken over as chair of the all-party group. Unfortunately, she had prior commitments today, but otherwise would have been here to take part in the debate My constituency in Liverpool is home to the fantastic Alder Hey Children’s Hospital, which works in close partnership with the University of Liverpool and the charitable sector to provide more research opportunities for children with rare diseases and their families. For example, in the rare neuromuscular diseases, Alder Hey has worked with patient-advocate groups and national charities to increase capacity and resources to offer access to clinical trials of new disease-modifying agents. Since 2016, Alder Hey has opened 19 new clinical trials for Duchenne muscular dystrophy alone, enrolling nearly 100 boys in these important trials. By providing excellent, world-class clinical and research expertise and working in partnership with the charitable sector, Alder Hey has been able to provide more opportunities for children with rare diseases to take part in research studies In my role as chair of the all-party group, it was a privilege to get to know the rare diseases community. During that time, the issue that was consistently raised with me by patients and their families, clinicians and pharmaceutical companies was the challenge they face attempting to navigate NHS England and NICE’s appraisal processes for rare disease treatment. As other Members have said, patient access to new orphan medicines in the UK lags behind many other European countries, including Germany, France and Spain. The Office of Health Economics found that the UK is slower at making access decisions and approves far fewer medicines for reimbursement than other European countries. According to the recent MAP BioPharma report, which used data from a four-year period, almost a quarter of licensed orphan medicines have not been appraised at all by NICE or NHS England. This can prevent rare disease patients from having any opportunity to access treatment The lack of capacity to appraise orphan medicines is just one of the systemic flaws—we have heard about others—with the current NICE appraisal system. The multiple pathways through which medicines can be appraised create further complications and delays. It is often unclear why one route is chosen over the other, so very similar orphan medicines can be subject to vastly different assessment criteria. We also know that patients are often stuck in limbo waiting for the results of private negotiations about price between companies and the NHS years after the market authorisation of their potential treatment It is against that backdrop that the all-party group asked Genetic Alliance UK to propose a method of making decisions about rare disease medicines that would be more effective, transparent and fair. The project is called “resetting the model” and it aims to develop a flexible new vision for getting access to rare disease medicines for the UK, and it will be delivered in the coming months. It is absolutely clear that the current NICE appraisal process is simply not fit for purpose and is acting to restrict many rare disease patients from having the opportunity to get access to potentially life-changing treatment Let me address a related issue. NICE has been consulting on guidelines for cannabis-based products for medicinal use. On Tuesday, I had the pleasure of meeting my constituent, Lauren Abernethy, who is the mother of Nathaniel. Nathaniel is 10 months old and has a type of epilepsy that is so rare that when he was diagnosed his doctors told Lauren and James, his dad, that Nathaniel is the only known case with this type of genetic mutation recorded anywhere in the world. For the next three months of his life, Nathaniel was in Alder Hey Hospital undergoing tests, and for most of that time he was in critical care Lauren was here on Tuesday as part of the “End Our Pain” lobby of Parliament. Owing to the extremely rare type of epilepsy that Nathaniel has, antiepileptic drugs do not work, so Nathaniel was granted the use of Epidolex, a medical cannabis product. He has reacted positively to the treatment, going from being in a state of continuous seizures to now having, on a good day, as few as three to five seizures. However, despite that progress, he continues to live in great pain. He jerks and twitches continuously, which is known as myoclonic jerks, and has up to 100 of these every day. Access to full extract cannabis oil might offer Nathaniel a better quality of life, which he surely deserves, but like so many other children who are suffering from intractable epilepsy, Nathaniel has so far been denied access to that treatment I welcomed the decision last November by the Home Secretary to reschedule certain cannabis-based products for medical use, but the reality for patients such as Nathaniel is very different. Only a tiny handful have succeeded in getting a prescription. Patients, some of whom are as young as Nathaniel, are being blocked from access to medicine, which, as the evidence shows, has at least a possibility of relieving their symptoms. I urge the Minister in his response today to talk about how a policy can be put in place, based on evidence, that enables patients with rare diseases who could benefit from medical cannabis getting access to it More broadly, may I echo the comments that have been made on both sides of the Chamber and ask the Minister today to set out what he will do to take this crucial set of questions forward? In particular, will he work with Genetic Alliance UK so that we can reset the model, working with NICE and NHS England, so that patients with rare diseases get the fair access to medicines and treatment that, surely, they all deserve.
It is a pleasure to contribute to this important debate. I thank my hon. Friends the Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon) for obtaining this debate, and the Backbench Business Committee for granting it Before I was elected to this House I worked for more than 30 years as a clinical scientist in our NHS. During that time, I developed a healthy scepticism for politicians advising on medical treatments, as it is a field that is best left to clinicians. However, I did want to take part in this particular debate because I know that issues around the availability of life-saving drugs and treatments for rare diseases are important to many people. My constituents have made me particularly aware of the unavailability of Orkambi to cystic fibrosis sufferers and of Kuvan to those affected by phenylketonuria. Today’s debate is also extremely valuable because it focuses on the way NICE operates and questions whether that operation is appropriate for those suffering from rare diseases. A rare disease is generally defined as one affecting fewer than five people in 10,000, but many people are affected by rare conditions. The UK strategy for rare diseases estimates that, in the UK alone, more than 3 million people will suffer from a rare disease at some point in their life Given, however, that relatively few people are affected by a particular rare disease, there are specific challenges in ensuring speedy diagnoses and access to appropriate services and treatments. NICE’s technology appraisal process involves looking at evidence from clinical trials and peer-reviewed research showing how well a medicine or treatment works, including its likely impact on mortality and quality of life; at the economic evidence of how much it costs the NHS; and at the views of clinicians, patients and other stakeholders As well as looking at the clinical effectiveness of a treatment, single technology appraisals and highly specialised technology evaluations also assess its cost effectiveness, which, as many speakers have said, is usually measured in terms of the cost per additional quality-adjusted life year, and this is assessed by looking at how many extra months or years of life of a reasonable quality a person might gain as a result of treatment Following changes introduced in April 2017, NICE set a maximum additional quality-adjusted life year threshold of £300,000 for highly specialised treatments. Under that threshold, they would automatically be approved for routine commissioning. This is 10 times higher than the standard NICE threshold of £30,000 for non-specialised treatments. Owing to the nature of lifelong genetic diseases, however, the required quality of life improvements are likely to be unobtainable. The charity Genetic Alliance UK highlights that no ultra-orphan treatments—drugs used to treat extremely rare diseases—currently used by the NHS would pass this test It is clear that an urgent rethink is needed on these policies, which are focused almost exclusively on price, to the detriment of patient outcomes. Genetic Alliance UK has argued that these policies will halt future access to innovative treatments for rare genetic conditions in England and that they contrast with the stated aim of the UK strategy for rare diseases to ensure appropriate procedures for evaluating the costs and benefits of treatment for patients The problem with the current NICE appraisal process is that certain treatments, particularly those designated as orphan medicines, are neither eligible under the narrow criteria of the highly specialised technology process nor appropriate for the single technology appraisal process. The reason could be that the treatment’s patient population is marginally higher than the maximum size considered through the highly specialised technology process, while the single technology appraisal process is inappropriate for most orphan drugs because of limited trial data The accelerated access review, which aims to speed up access to innovative drugs, devices and diagnostics for NHS patients, recommends that NICE undertake a review of its methods and processes to ensure that they are fit for purpose, which I think everyone in the Chamber would agree is long overdue. The review warns that “it is important that no groups of products can ‘fall between the cracks’ and struggle to find a decision-making process”. We have heard heartfelt speeches today from my hon. Friends that have illustrated that some products are falling through the cracks and that families and young children are suffering The views of the accelerated access review are in line with those of the NHS five year forward view, which includes a recognition of a broad measure of value that goes beyond price alone. I have combed through the latest NHS long-term plan, and I cannot find any reference to this important issue. When the Minister responds, I would be grateful if he could point out to me where the issue is mentioned in the most recent iteration of the plan NHS England and NICE need to reconsider how they account for rarity in their assessment process to support the NHS in its mission to provide a comprehensive service that is available to all at the point of need, including to those with rare conditions.
I thank the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon), and the Backbench Business Committee, for arranging this debate. I am here to speak up for people in Dudley with cystic fibrosis, phenylketonuria—or PKU—and spinal muscular atrophy I have been campaigning with others to make Orkambi and other new treatments available for people with cystic fibrosis because I was contacted by Carly Jeavons from Dudley, who took part in the clinical trial for Orkambi, and by Samantha Carrier, whose baby daughter Daisy was diagnosed shortly after birth. Samantha has given up her career and now devotes her life to campaigning for access for these life-changing drugs. While listening to this debate, I have been receiving emails, texts and other messages from people around the country—heroic parents of children with cystic fibrosis who work so hard and campaign tirelessly for the treatments that their children need. I know that the Minister has met some of these parents, and I hope he will have some new answers for them today, because they have worked so hard to raise these issues, which really do need to be sorted out Before the clinical trial, Carly Jeavons had to take 90 tablets and do two hours of physiotherapy a day. She had a lung function of around 44% and spent two weeks in hospital every three months. She had to choose between the financial hardship of leaving work or her health being made worse as she struggled on at work. She told me: “Orkambi has changed my life. My health has remained stable. I only need one or two courses of IV’s per year instead of the four previously, hospital visits have been massively reduced and admissions are non-existent.” Since having Orkambi, she has been able to go on holiday abroad for the first time with her family, and she has got married. She has also started a business and is employing people, so she is making a much bigger contribution to the economy. The Government need to look at the contribution that people who get these drugs can make to the economy, not just at the costs of providing the drugs. I believe that NHS England and NICE are with Vertex this afternoon for yet another meeting about whether these cystic fibrosis drugs can be provided. But this comes three years after NICE appraised Orkambi. I really hope that the Minister will explain how this situation can be resolved and how other situations like it can be avoided, so that patients can get can get access to these drugs Let me turn to the issue of treatments for people with PKU. Some of the people who have been leading this campaign are sitting in the Public Gallery, watching this debate. Again, I hope that the Minister will have some good news for them today. As we have heard, PKU is a rare metabolic disease that leaves people unable to metabolise protein properly, leading to a toxic build-up of material that can cause irreversible brain damage. The only existing treatment is a strict diet of extremely low protein, meaning that almost all normal foods are off limits. The diet is lifelong, and sufferers find it stressful and difficult to cope with. I had never heard about this condition until a woman in Dudley called Kirsty Thornton got in touch with me. Since then, I have met the campaigners and taken part in a PKU diet challenge. I have also joined the cross-party parliamentary campaign led by the hon. Member for Blaydon to ensure that people with PKU get access to the treatments and supplements they need It is heartbreaking for parents of young kids with PKU who do not understand why they cannot go to their friends’ birthday parties in case they eat the wrong foods that will make them tired, sick and ill for the rest of the day, or for longer. Students say how difficult it is when their friends are going on nights out, or they move to university and the people they share a flat with are ordering in pizzas and so on, or they cannot go out on a date because they do not know what they are going to be able to eat or not eat. This must be really tough for young people.
My hon. Friend will probably be aware that the Government are looking at a new food strategy, and one of the things under consideration is better food labelling. A lot of people think that those who make certain dietary choices do it almost to be trendy, or just because it is the fashionable thing to do, but there are people whose lives are at stake if they cannot get the information on food that they need. Food manufacturers and anyone else involved in the provision of food need to be alert to the fact that it is important that people know what they are going to be eating.
That is a really important point. The PKU campaigners have explained to me that on some occasions when manufacturers have changed the ingredients in food or drinks, that has had a terrible impact because people with PKU have not necessarily known about it, so they have continued to drink or eat things that they have consumed without any problems in the past, but because the ingredients have changed, it has caused them a big problem For many people with PKU, taking Kuvan considerably increases the amount of protein that they can safely eat. We are therefore urging the Government, the NHS and BioMarin, which manufactures these supplements, to agree a deal so that people with PKU can enjoy a normal healthy life. I spoke to the National Society for Phenylketonuria this morning, and it told me that the whole PKU community are demoralised. They say that they are working hard but feel that not much progress is being made. What is the Minister going to do today to give these people, some of whom are in the Public Gallery, and others who are sitting at home with their kids watching this debate, to give them hope of this situation being resolved My next point is about Spinraza treatment for people with spinal muscular atrophy, or SMA, which affects an estimated 1,300 people across the UK. It can cause irreversible loss of a child’s ability to crawl, walk, breathe and swallow. In the most severe cases, it can cause death. Spinraza is the first possible treatment for those who have SMA types 1, 2 and 3. It can slow its progression and prolong life. From April, this treatment is going to be routinely available in Scotland, and it is already available in 24 other countries in Europe, yet it is still stuck in the NICE process for England, Wales and Northern Ireland That is why, in the end, the purpose of this debate is to ask the Government to look carefully at the way that NICE works. New drugs are being developed, and technological changes are happening, so rapidly that the Minister needs to be able to tell us how the way drugs are assessed and licensed, and then approved, will work in future. How is he going to ensure that these ground-breaking drugs are made available to the people who need them, when they need them? In 2016, NICE was not able to recommend the use of Orkambi because of uncertainty around its long-term value, impact and cost-effectiveness. But this drug is available in the USA, across Europe, and, more recently, in Scotland, so when do the Government think patients in England are going to get it? This is really urgent. The system has not worked and patients are being let down On PKU, NICE decided to start an appraisal of Kuvan in 2018, but this has since been suspended. NICE is currently reconsidering which appraisal process to use to access Kuvan, and the NHS is considering whether to fund an interim policy for the use of the drug. But, again, this is not enough, and not quick enough. The NICE process sees PKU as rare, but not rare enough. As we have heard, the majority of PKU treatments are assessed by the STA process, which is designed for non-rare treatments. NICE’s approach evaluates the lifelong costs of treatment, meaning that the cost thresholds and the approach to evidence are all designed for more common diseases than PKU. SMA sufferers are waiting for NICE, NHS England and Biogen, which manufactures Spinraza, to come to a deal. I hope we will hear better news on all those things from the Government than we have in the past It is my job to listen to people in Dudley who are living with cystic fibrosis, PKU, SMA and other rare diseases, to come down to London and speak up for them in Parliament and to demand, as we are doing this afternoon, that the Government ensure that they get access to the treatment they need and deserve.
I would like to thank my hon. Friends and neighbours from the glorious north-east, the Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon), for securing a debate on this important topic, and the Backbench Business Committee for granting it. I want to focus my comments on phenylketonuria, which is classed as a rare disorder and has stark impacts for sufferers. If left untreated, PKU can result in brain and nerve damage, behavioural difficulties, vomiting, tremors and epilepsy, yet some of the impacts can be mitigated to a degree, if only the NHS would allow the drug Kuvan to be readily available PKU sufferers cannot metabolise protein and, as such, are kept on a strict diet and take a large number of supplements to ensure that they do not become deficient in anything that we would normally get from the foods they are unable to eat. Many sufferers also need to take an unbelievable number of tablets each day—tablets that are large and difficult to swallow. My constituent Harvey Parker has PKU. He is 15 years old and takes a staggering 65 of these tablets every single day. Although it is a distant memory for some of us, I am sure we all remember how difficult it is being a teenager, with that want to fit in and not stand out. Harvey told me that Kuvan would help him lead a more “normal” life Eating out and sharing food with others is an important part of socialising and something that most of us do without thinking, but many places do not cater for Harvey’s needs, and he ends up feeling “embarrassed”, “isolated”, “angry” and a “burden”. He said that when he has been out with his mates on a weekend, he tells his mam and dad that he has not eaten because he was not hungry, when really it was because he could not find anything that he could eat. Harvey told me: “I don’t really talk to any of my friends about PKU as I get embarrassed and when I’m with my friends with no tablets to take, blood tests to endure or bland, unpalatable foods then I am just Harvey, one of the lads and not that boy with the rare invisible condition that no one has ever heard of.” It is clear to see how access to Kuvan and the more relaxed diet that would follow could improve Harvey’s life. It has improved the lives of others who have taken it, so why is it being denied to so many sufferers Kuvan is used by more than 2,000 patients worldwide and is commonly used in 23 other European countries, but not England. Some sufferers have had access to the drug on the NHS after costly and lengthy court battles, but most are not that lucky. At an estimated annual cost of up to £50,000, the drug remains out of reach for so many sufferers. An adult with PKU’s protein-restricted diet costs the NHS £12,000 per year. Many sufferers get prescriptions for their food, which has a high price tag: a packet of pasta is £7.20, and a loaf of bread is £7.48. Our NHS was created on the principle that good-quality healthcare and medication should be accessible to all and free at the point of need, regardless of income, but time and again under this Government we are seeing the destruction of our NHS by stealth, with creeping privatisation and a rolling back of that principle Constant wrangling led to a situation where, four years ago, NHS guidance said that there was not enough evidence to prescribe Kuvan, and it then referred the issue to NICE to see whether Kuvan could be made readily available on the NHS. As we have heard, NICE has two methods of appraising medicine: the highly specialised technology appraisal for rare diseases, and the single technology appraisal route for common diseases. NICE decided to assess Kuvan using the same route as for common diseases, despite the fact that only one in 10,000 people has this illness—hardly “common”. Thanks to campaigning by the National Society for Phenylketonuria, NICE then suspended the appraisal and decided to reconsider, but the new process has yet to be started. However, as other Members have already noted, the HST route is not ideal for rare diseases, and a whole new different approach is needed The NHS also decided to prescribe Kuvan, then changed its mind due to costs. In short, it decided that it was too expensive. That is what happens when privatisation and outsourcing are prioritised over patients’ care and wellbeing. Harvey’s mam, Diane, said to me, “How can you put a price on my son’s health?” I sincerely hope the Minister will let Diane and Harvey know.
It is a pleasure to follow the hon. Member for South Shields (Mrs Lewell-Buck), with her passion for the subject matter and on behalf of her constituents, so well done to her. I thank the Backbench Business Committee for enabling this debate to take place. I was very pleased to go along to it with the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon)—two formidable, diligent ladies who have put down their marker on this subject matter. I was very pleased to be the third in the trio involved, and well done to them for giving us the opportunity, on behalf of our constituents, to express our concerns today I am sure that, like me, most Members in the Chamber have been inundated with emails from people begging to be helped, and begging for the drug that they need to be made available. Every one of them has said that, and I do not believe that anyone can ignore it. It is not only in the emails, but in the interaction we have with our constituents when we hear their stories face to face I want to start with a good story and to say what happened—not, I have to say, through this Minister, but through the Home Office. I fought very hard to see medicinal cannabis legalised for my beautiful young constituent Sophia Gibson, and what a difference that has made in her life, as it has to the lives of others. Her parents had no option other than to uproot their family and move to Holland to get the treatment that Sophia needed. At the same time, they were respectfully knocking on doors and following the system through to a Home Office Minister, the Minister for Policing and the Fire Service, and getting clinical assistance in order to bring about a change. Eight months later, their daughter has been at school more than ever before in her whole lifetime. She has had substantially fewer admissions to hospital, and has attended school parties that were impossible—they were too much for her—without this medication. She is a very different young girl today because her parents, Darren and Danielle, fought the battle in the right way and in the right place. Today, we have all presented our cases for the right battle, in the right place, at the right time and with the right request Since that time, I have had many other parents coming to me and asking me to help secure the drug that their child needs. A mother in my constituency has an absolutely gorgeous two-year-old son—Lorcán they call him—whom Orkambi would help. Orkambi is a second precision medicine, which targets the root cause of the disease, and it would benefit about half the people with cystic fibrosis in the United Kingdom of Great Britain and Northern Ireland. Cystic fibrosis is a terrible illness that affects the lungs and digestive system of people with the condition, who have a median life expectancy of just 31 years old I say this very respectfully, and I hope it will be taken into account: Vertex Pharmaceuticals, NICE and NHS England must end the protracted negotiations for the drugs Orkambi and Symkevi. We must break the stalemate between the three parties and provide access to these drugs, which could so vastly improve the quality of life of my constituents and those of everybody here, as they deserve. They want and need that drug desperately I have often spoken about the need to allow people to access Orkambi on prescription, and I have often been beyond frustrated with the lack of movement between the drug company and NICE. There must be—indeed, there has to be—something that can be done to find a way forward, and I believe that it must be done in this House. Today, we look to our Minister and our Government to give us answers and, respectfully, the answers that we need. We must instruct the Department to negotiate a way forward to ensure that my young constituent and so many others like him can live a better life I was contacted by the Muscular Dystrophy Association regarding spinal muscular atrophy—other hon. Members have spoken about that condition on behalf of their constituents, and I will do the same. SMA is a rare inherited neuromuscular condition that affects lower motor neurons in the spinal cord. It leads to the gradual loss of someone’s ability to walk, crawl, move, breathe and swallow, and it requires complex medical support. About 100 children are born with the condition each year, and around 2,000 children and adults in the United Kingdom are living with SMA. Spinraza is the first and only treatment for patients with spinal muscular atrophy. It is meant to increase the body’s ability to produce a protein called survival motor neuron, which is essential for motor neuron health. The treatment is administered through an injection into the spinal canal. It is never an easy treatment, but if it provides an opportunity for better health, people should take it For children with SMA type 1, life expectancy is rarely longer than two years. Some children who have received Spinraza have seen their muscle strength improve, and have lived long enough to crawl and even walk. For those children, Spinraza has been a lifeline—perhaps I should say that Spinraza has been life itself, as that is the level we are talking about. Spinraza proved so effective in clinical trials for children with SMA type 1 —the most severe form of the condition—that the trial was stopped early so that all children affected by it could potentially access that treatment The Spinraza appraisal took almost 14 months, and currently 25 European countries—including Scotland in the United Kingdom of Great Britain and Northern Ireland—have already made it available, nearly two years after the European Medicines Agency granted it a licence. Although Translarna was eventually approved by NICE in July 2016, that was more than two years after the European Medicines Agency gave it a licence. Such lengthy delays to a process that could and should be significantly shorter have resulted in frustration and anxiety for many families who see a life-changing treatment within touching distance. They can almost reach out for it, but they can never get it, and that is where frustration creeps in. That group of people see a better life but are prevented from accessing it. There must be a better way of dealing with these issues, and we must find it or instruct the Department to find it My heart aches as a father and grandfather who would do anything for his children and grandchildren, and other right hon. and hon. Members would do the same for theirs. The block on life-changing drugs affects not only the child but the entire family. If a child or adult has a physical disability, their family also feel that and live with it every day. Many families in the UK do not have access to life-changing medication, and I wholeheartedly and sincerely urge the Minister and his Department to enter into talks, find a way forward, and do better so that people can live better. The Government have set aside £40 billion for extra health support. I welcome that, as do all hon. Members, and I gently suggest that some of that money should be set aside for life-saving drugs.
It is a pleasure to follow the hon. Member for Strangford (Jim Shannon), and I congratulate the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon), and the Backbench Business Committee, on securing this debate This is not the first time that I have spoken in such a debate, and I declare an interest because my two-year-old granddaughter, Saoirse Fellows, has cystic fibrosis. We are very fortunate because she is pancreatic sufficient, but it is a real worry for our family. I should also say that I am waiting for granddaughter No. 4 as we speak, so if I am a bit lightheaded that is why. I have never listened to a debate in either Westminster Hall or the Chamber in which so many people have cited Scotland as a great example of how to do things. That is normally my job in these debates, so I am grateful to hon. Members who have already done part of that job for me An estimated 7,000 rare diseases affect about 3.5 million people in the UK, and around 80% of those are genetic. It has been reported that 95% of rare diseases have no approved treatments available. The default NICE referral route for the majority of orphan medicines is the single technology appraisal, but many will be close to meeting the selection criteria for NICE’s highly specialised technology programme, which has already been mentioned. Stakeholders are frequently sought to make the case for an HST referral, which is a more appropriate route for orphan medicines The Government have maintained the position that it is appropriate for orphan medicines to be considered under NICE’s standard STA and that orphan medicines have been successfully reviewed under the STA programme. However, many Members have said how that is not working for their constituents. The Scottish Medicines Consortium has adapted its processes to increase the input of clinicians and patient group experts in decisions for certain orphan medicines Mr Deputy Speaker, I am cutting my speech because I want to allow more time for both the Opposition spokesperson and the Minister. Scotland and the SMC has led from the front, and NICE has adopted many of its methods in the past. I encourage the Minister to look again at what Scotland is doing. We are a small country and a devolved nation, but we can do it, so I can see no reason why the England NHS should not be getting the same medicines as we do. We have a higher approval rate: 69% in Scotland to 55% in England. We have a new medicines fund specifically for orphan drugs, which is instrumental in helping to secure access to medicines for rare diseases. That does not exist in the other devolved nations. Both Scotland and Wales have taken a proactive approach to addressing concerns about the applicability of the standard processes for orphan treatments The new medicines fund has really helped to deliver better medicines more quickly to Scotland. The fund has covered the cost of orphaned drugs for individual patients where the condition affects fewer than one in 2,000 people. A total of £21 million was made available for the fund by the SNP Scottish Government. The Scottish Government have since made further improvements, reforming access to new medicines by creating the peer approved clinical system tier 2. The system allows clinicians, on behalf of their patients, to ask a PACS panel whether they can access a medicine that has not yet been recommended by the Scottish Medicines Consortium. That is exactly why Orkambi and Symkevi can be used in Scotland. I would suggest it is absolutely imperative that this is looked at in England. Spinraza, which has been mentioned in the debate, is already being used in Scotland. I ask the Minister this: why is it not possible for NHS England to use those drugs in England to the same extent that they are in my own country I do not want to bring too sour a note to the end of this debate—there is real consensus across the House, and Members have spoken sincerely and passionately on behalf of their constituents and others across the country—but I worry, and I think many other Members across the Chamber will be worried, that we are heading towards Brexit. No one knows where it is going or the impact it will have on the availability of medicines generally, and, more importantly for this debate, medicines that are not yet even available in England as they are in Scotland.
It is a real pleasure to take part in this very important debate. I start by thanking my hon. Friends the Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon). We are part of the north-east massive, so I am very pleased to be joining them in this debate today. I thank them for their very passionate and heartfelt contributions. I should also mention, as part of the north-east massive—it goes without saying—my hon. Friend the Member for South Shields (Mrs Lewell-Buck). I thank all other hon. Members who spoke for their excellent contributions. They know who they are and I do not need to name them. They were all fantastic Throughout the debate we have heard of the heartbreak experienced by patients and their families when they are unable to access life-saving drugs on the NHS. We have heard of their determination to continue fighting to access those drugs, whether by writing to their MP or even by protesting in Parliament square. I was happy to join my hon. Friend the Member for Bristol East (Kerry McCarthy) there just two weeks ago for the Cystic Fibrosis Trust rally, where people were calling, “Orkambi now!”—they were so loud that we could hear them over the crowds chanting, “No Brexit!” or whatever the shout was at the time. We must hear patients’ voices in this debate, as it is they and their families who are affected the most by the appraisal process, which is not fit for purpose. The Minister has heard about the real-life experiences of patients throughout this debate, and I am sure that he will continue to listen to them afterwards. I know that he is also in regular communication with patients. In my role as shadow Public Health Minister, I regularly meet patient groups and campaigners, so I know just how important access to these life-saving drugs is to them As a constituency MP, I recently met young Riley and his mum Michelle. Riley has phenylketonuria—PKU—and needs Kuvan. He is now 11 and at secondary school. He just wants to blend in with his mates and to be able to go on those first excursions out to the Metrocentre, and perhaps to get something unhealthy to eat from a takeaway, but obviously he cannot do any of that. I asked him about his life and how he felt not having access to Kuvan. He said that it was not fair and that it made him mad. Well, I agree with Riley It can take years to get the right diagnosis for a rare disease, so once patients get the diagnosis they are excited and feel that there has been a breakthrough, because they think that they will finally get the treatment they need and deserve. Instead, as we have heard today, they are back at the beginning of the fight, because the life-saving drugs that do exist are not available to them on the NHS. It is one hurdle after another for patients with rare diseases. That is why the Opposition strongly believe that patients should have fast access to the most effective new drugs and treatments. I am therefore pleased to support the motion As we have heard, a rare disease is generally considered to be one that affects fewer than five people in 10,000. According to the 2013 UK strategy for rare diseases, it is estimated that in the UK more than 3 million people will suffer from a rare disease at some point in their life. All those patients must have access to the drugs and treatments that they need. However, they are being failed by the NICE appraisal process, which is just not fit for purpose when it comes to assessing the suitability of drugs and treatments for rare diseases Patients with rare diseases are squeezed in the middle of two appraisal routes: the highly specialised technology evaluation programme and the single technology appraisal route. The HST evaluation programme is selected for most non-cancer rare disease medicines and is designed for evaluating medicines of that nature, with small patient populations. However, the HST evaluation programme currently lacks the capacity or capability to effectively appraise all new licensed orphan medicines. Since the HST evaluation programme was established in 2013, it has published guidance on eight medicines, which is much fewer than the 45 orphan medicines for non-cancer indications that have been licensed in the same period The STA route is designed to appraise treatments for more common conditions and those with existing treatments. This route is poorly suited to considering rare disease medicines, which tend to have small patient populations, a limited evidence base and benefits beyond direct health benefits—something the appraisal process just does not take into account. Some rare diseases are not rare enough for the STA route, and only a handful of medicines are being approved by the HST route. Yes, it is complicated, but it is clear that neither route is working for patients with rare diseases, so patients are missing out on crucial medicines Kuvan was licensed in 2008 to treat PKU patients, but it is still not available to patients in England. Orkambi was appraised by NICE in 2016 through STA, but was recommended for use. Three years later, as we have heard, people with cystic fibrosis still have no access to it. That has caused physical and psychological harm to patients and their families. Every day without the drugs that they need makes their condition worse. We must have an appraisal process that captures rare diseases effectively Medicines to treat rare diseases are often found to be cost-ineffective, which is why they are not approved for routine commissioning. However, establishing value for money is not straightforward, especially when population groups are small. It does not sit comfortably with me—or, I am sure, with any of us—that cost-effectiveness is prioritised above clinical need, or, as we have heard, the lives of children. Manufacturers want to make a reasonable return on their investment, although some of the figures are huge, but I do not think that that should be a priority. Manufacturers must not hold NICE or NHS England to ransom for their own financial gain.
Or the Government.
Exactly Behind profit forecasts are thousands of people and families who need access to life-saving drugs, and they simply cannot wait any longer. We must not put businesses before patients. Because of the NICE appraisal process, patients and their families are being left in an awful limbo. The processes can be long-winded, confusing and difficult to navigate. Some medicines can undergo multiple assessments while others are not assessed at all, and that creates an unpredictable and unattractive system. As a result, patients are left in the dark about when, or if, they will have access to innovative treatments for their conditions When a drug is being appraised, patients live in hope that this time it will be approved for use by NICE—as in Maryam’s case, which was described so powerfully by my hon. Friend the Member for West Ham (Lyn Brown)—but they are almost always left to feel disappointed and helpless. Patients and their families must be involved in the processes, and the processes must be transparent The wait for access to drugs is excruciating, especially when the drug is available in nearby countries, or even—as we have heard—in Scotland. Spinraza is available to patients in Scotland, but not to those in England. My hon. Friend the Member for West Ham spoke passionately on behalf of her constituents and their seven-month-old baby Maryam. This sounds blunt, but she is dying, because she has been denied access to medication that could extend and enhance her life The pain and anguish that the parents of a critically ill child must feel when they are told that there is medicine available that will help but it is not available for their child are unimaginable. Knowing that if your child lived a few hundred miles away, in Scotland or perhaps somewhere in Europe, the drug would be available is heartbreaking and infuriating. Patients in England should not be left behind. We should be working to find ways to get these medicines to the patients who need them, on the NHS. I hope that the Minister will consider the motion seriously, for the sake of patients with rare diseases and their families. They cannot be left behind any longer: they must have access to these life-saving drugs now.
Let me add my congratulations to the hon. Member for Blaydon (Liz Twist) on securing the debate. I was not familiar with the north-east massive, although I am now. I was familiar with the individual component parts of the north-east massive, especially my shadow, the hon. Member for Washington and Sunderland West (Mrs Hodgson), but I have not seen them as a collective before. I must say that they hunt well as a pack I know of the work of the hon. Member for Blaydon, who chairs the all-party parliamentary group on phenylketonuria. We have discussed these matters before, in Westminster Hall, and I do not doubt that we will discuss them again Other Members have spoken passionately today, on behalf of their constituents, about the importance of access to new medicines. As the hon. Member for Dudley North (Ian Austin) rightly said, Members are doing their job, and I am doing mine: as requested, I have listened very carefully to the debate. I thank my hon. Friend the Member for Reigate (Crispin Blunt), and the hon. Members for Wolverhampton South West (Eleanor Smith), for Bristol East (Kerry McCarthy), for West Ham (Lyn Brown), for Liverpool, West Derby (Stephen Twigg), for Heywood and Middleton (Liz McInnes), for Dudley North, for South Shields (Mrs Lewell-Buck)—part of #massive—for Strangford (Jim Shannon) and for Motherwell and Wishaw (Marion Fellows), who speaks for the Scottish National party The hon. Member for Liverpool, West Derby touched on the subject of cannabis, and I will happily write to him about that in more detail if he wants. As he knows, the all-party group report came out yesterday. I have not had a chance to look at it yet; I am aware of it, obviously. The Government changed the law and specialist doctors can now provide cannabis-based medical products where there is clinical benefit. To support doctors in this—because the politicians are ahead of the clinicians on this one—we asked NICE to develop new clinical guidelines and we asked Health Education England to provide additional training, while encouraging more national research to develop the evidence base in this. I have said before and I shall say again that I am very clear that we need to provide more support and encouragement to commissioners in this space because, as I said, politicians are ahead of the clinicians on this one Everyone has spoken incredibly passionately and there has been very little politics in the debate, which has been excellent, at the end of this week. It is very good to hear Parliament discussing something else, which of course it does all the time; it is just that that is never reported— I dare say this will not be, either The Government share the view of everyone in the House that it is in the interests of all NHS patients that we have the best system in place for making evidence-based decisions on whether new medicines are routinely available. Of course it is easier when one is on the Back Benches to just say the system is hopeless, but we have to work with the system we have, or change it. We inherited the NICE set-up. It was mentioned in the first Labour Queen’s Speech, in ’97. It was created in 1999 in a Delegated Legislation Committee by then Health Minister of State John Denham, who is a good man. He set it up. When he did so, he said it was set up to make independent, evidence-based recommendations for the NHS on whether drugs represent an effective use of NHS resources NICE is widely recognised as a world leader in the field of health technology assessments. Its methods and processes have been developed and continuously refined over the last 20 years through periodic review and engagement with stakeholders. Politicians are not in the middle of those decisions, and rightly so; that is how the system was set up by the aforementioned Mr Denham. Maybe the hon. Member for Heywood and Middleton was right to trust her instincts—
Will the Minister give way?
No, because the hon. Lady has had her say and I am going to have mine in the short time I have. If I have some time—
It is on behalf of my constituents.
Mr Deputy Speaker, I think the hon. Lady has spoken on behalf of her constituents a lot today, and very well. [Interruption.] I do not think, given the tone of this debate, we need to get unpleasant in here. [Interruption.] I will address the points in my speech and, if the hon. Lady does not like that, I am sorry, but I do not think anybody watching this, least of all the families affected, need to hear that tone As a result—
rose—
Order. Whether the Minister wishes to give way is up to the Minister and we must let him finish his speech.
Indeed, Mr Deputy Speaker; some people just cannot help themselves NICE operates two separate programmes for the assessment of new medicines. First, there is a technology appraisal programme through which NICE assesses the vast majority of new medicines. Secondly, as has been said, there is a highly specialised technologies, or HST, programme that is reserved for the evaluation of very high-cost drugs for the treatment of the very small number of patients in England treated in a handful of centres in the NHS. Decisions on whether a medicine should be routed to NICE’s mainstream technology appraisal, or the HST programme are taken through an established topic selection process that includes consideration against published criteria and engagement with a wide range of stakeholders. When NICE recommends a drug for use through either route, NHS organisations are legally required to provide funding so that it is made available to patients Today, we have heard concerns that NICE’s technology appraisal programme is not suited to the assessment of medicines for rare diseases, with some calls for individual drugs to be assessed through the HST programme instead. We have also heard calls for a third appraisal route for rare diseases not eligible for the HST programme. I have listened very carefully to all of them and will reflect on them all. There is some sense in a lot of what has been said. Indeed, over the last 20 years, NICE has made positive recommendations in 75% of its appraisals of orphan medicines. By comparison, NICE recommends around 80% of medicines for more common diseases I shall give the House two recent examples, because of course we only ever hear about the examples that are stuck or refused. NICE has been able to recommend orphan medicines for neuroblastoma, a cancer of the nerve cells that affects children—this has been widely welcomed—and for primary biliary cirrhosis, a progressive liver disease. Moreover, through its HST programme, NICE has to date been able to recommend a further eight medicines for NHS patients outside of the standard appraisal route. In each case, NICE’s recommendation is subject to a managed access agreement negotiated between the drug company and NHS England There will always be cases where NICE is unable to recommend a medicine because the price set by the company does not reflect the benefits that it brings. That is a fact. Hon. Members have of course spoken about the rare diseases of people in their constituencies—they are doing their job—but NICE is an independent body and it should be allowed to develop its guidance free from politicians. The hon. Member for Heywood and Middleton said that that was her initial instinct before she became a politician. That is the foundation of NICE’s reputation as a world leader in its field, and it is in the best interests of patients that it does that The hon. Member for Blaydon, in introducing the debate, raised concerns about Kuvan, the treatment for phenylketonuria. NICE has initiated an appraisal of Kuvan, and officials from NICE, NHS England and our Department have been reconsidering the appropriate assessment route in the light of the new available information that the hon. Lady mentioned. Riley is right: we have to make this fair. I am told that a final decision will be taken promptly—I urge that again from the Dispatch Box today—and with the minimum impact on the timescale for NICE’s assessment The hon. Members for Strangford, for Bristol East and for Dudley North have all spoken about the issue of Orkambi so many times and so well. It is incredibly frustrating and disappointing to Ministers, just as it is to them and everyone else, that Orkambi is not available to NHS patients in England at the moment. I understand and share that frustration. This is why my right hon. Friend the Secretary of State held a meeting with Vertex, NHS England and NICE a couple of weeks ago. I was at that meeting, at which the parties again discussed how best to reach a conclusion. I am pleased to say that they are meeting again today to continue the discussions and decide on the next steps. Decisions about the availability of drugs in Scotland are of course a devolved matter, and that is up to Scotland. I understand that no decision has been taken on routine funding for NHS patients in Scotland, but the hon. Member for Motherwell and Wishaw asked me to look again at the Scottish system. I will do that and I will ask the Minister responsible for this policy area to do so. The hon. Member for North Tyneside and others raised the issue of the drug Spinraza for the treatment of spinal muscular atrophy. I understand that NICE’s independent appraisal committee met earlier this month to consider its recommendation on Spinraza following new evidence being put forward by the company. NICE wrote to the company and patient groups last week to say that it was not yet able to provide an update on the outcome of the meeting, but that it would provide an update soon. Again, I encourage that to happen even sooner. I recognise that the protracted process in this instance is hugely frustrating for patients and their families and, whatever our differences across the Dispatch Box, of course I feel the deep hurt that the hon. Ladies who spoke on the subject have laid out. I hope they will appreciate that a final decision has not yet been made and that NICE must be allowed to complete its work free from political interference I do not have time to go into a huge amount of detail. I have been asked lots of questions during the debate, but I have little more time than the people who have spoken today. I thank Members for speaking so passionately and I hope that they will welcome the forthcoming review of NICE’s methods and processes over the course of this year for both its technology appraisal and its highly specialised technologies programme, which is at least partly what today’s motion calls for. It would not be appropriate to pre-empt the review by commenting in detail on what it should look at, but I will ensure that it is directed towards the motion before us today and to the transcript of today’s deliberations. I now want to give time to the hon. Member for Blaydon, who introduced the debate, to close it in the time that we have left.
I hope that hon. Members will forgive me if I do not list them all, but I want to respond to the Minister. First of all, Minister, it is not easy for us on the Back Benches to criticise and lobby. It is really difficult for us, because these are our constituents. They are real people who have real conditions. We have tried to be constructive in the debate and said that we have identified issues around the NICE appraisal system that we think need to be addressed urgently. I notice that he mentioned the review and said that our concerns would be drawn to its attention, but will he ensure that there is dialogue and input before the review takes place to ensure that it is not just technical, but addresses the concerns that we have raised?
indicated assent.
I see the Minister nodding, so perhaps that can be recorded in Hansard. He also said that he has heard from us about these issues before, but I can tell him that he will hear from us again—
I am raising the issue of the valproate pregnancy prevention programme today as a result of tireless campaigning by my constituent Janet Williams. Along with her friend Emma Murphy, Janet, who is here today, launched the Independent Fetal Anti-Convulsant Trust, or INFACT, in November 2012, and they have almost single-handedly kept the issue of disabilities caused by anticonvulsant medication on the political agenda since then. Despite both living in the north-west of England, they regularly travel to and from London to demand action from drug companies, politicians and civil servants, and they simply will not take no for an answer. Mr Deputy-Speaker, you may know that when a woman from Lancashire gets her teeth into something, she is not going to let go. The campaign for justice and to ensure that no families are similarly affected continues, but the fact that progress has been made in recent years is largely down to Janet and Emma It may help if I first provide some background to sodium valproate. The drug, a trade name of which is Epilim, is manufactured by Sanofi, among others, and has been prescribed in the UK since the 1970s. Despite its effectiveness for treating certain types of seizures, research has demonstrated that it carries a higher level of risk to the exposed foetus. Around 27,000 women are currently taking sodium valproate in England and Wales. Scientific data demonstrates that around 10% of children exposed to sodium valproate will be born with a major congenital malformation and their IQ is likely to be lower, with 29% requiring additional educational support and 6% being diagnosed with significant social communication difficulties such as autism Estimates of the number of children still being affected by this drug vary. In February 2016, the right hon. Member for North Norfolk (Norman Lamb), the then Minister for Life Sciences, stated that 336 children are exposed to valproate every year. Figures from the Clinical Practice Research Datalink suggest that the figure could in fact be 176. However, even the lower number would imply that 7,000 children have been harmed by valproate since it first came on the market in 1973, with a further 28 a month still exposed to it Sodium valproate received its licence to be prescribed in the UK in 1973. The first case reporting the effects of sodium valproate during pregnancy appeared in 1981. By 1987, the damages caused by the drug in pregnancy were recognised throughout the medical professional, being given the title of foetal valproate syndrome in 1995. National Archive documents show that the Committee on Safety of Medicines was aware of the dangers of valproate when taken in pregnancy at the time of licensing, but it decided to inform medical professionals while keeping the women taking the medication in the dark. The patient information leaflet for sodium valproate was only changed to highlight the risks during pregnancy in 2000, and the information was sparse even then Women and children have been let down by the pharmaceutical industry and successive Governments over many decades, and I hope that they will one day be compensated for the failures that were allowed to occur. However, I want to focus the remainder of my time on addressing how we can ensure that all women of childbearing age taking sodium valproate today are aware of the risks it poses and are able to make informed decisions about their future The valproate toolkit was introduced in March 2016 and gave healthcare professionals the opportunity to inform patients voluntarily of the dangers of taking valproate in pregnancy. Sadly, the toolkit failed to achieve its aims. It took the form of a patient booklet, pharmacy cards that were received on collection of a valproate prescription, a healthcare professional booklet and a checklist for specialists INFACT surveyed patients and pharmacists, and the two surveys found that around 85% of patients were not receiving the patient booklet and 90% were not receiving the pharmacy card. In a letter from Sanofi on 27 May 2016, INFACT was informed that the patient booklets were not given to GPs, as had previously been indicated by Ministers, but instead had to be downloaded by GPs from the Sanofi website. In designing the pregnancy prevention programme, what lessons have been learned from the failure of the valproate toolkit The pregnancy prevention programme, as a mandatory action, was introduced in April 2018 following the failure of the valproate toolkit, which gave healthcare professionals the opportunity to discuss the dangers of valproate with their patients. It was stated: “To protect public health, the Medicines and Healthcare products Regulatory Agency (MHRA) has changed the licence for valproate medicines (Epilim, Depakote and generic brands). Valproate must no longer be prescribed to women or girls of childbearing potential unless they are on the pregnancy prevention programme (PPP)… Healthcare professionals who seek to prescribe valproate to their female patients must make sure they are enrolled in the PPP. This includes the completion of a signed risk acknowledgement form when their treatment is reviewed by a specialist, at least annually.” As with the valproate toolkit, the PPP included a booklet to enable patients to understand the risks and a small, credit card-sized information card for pharmacists to provide on dispensing the drug. However, the PPP was strengthened by the addition of an “acknowledgment of risk” form, which was to be signed by the doctor and the patient on the communicating of the risks. For the pharmacist, there was the addition of ensuring that every dispensed prescription of valproate included the patient information leaflet, the credit card-sized information and warning stickers on the white chemist boxes, all of which had been supplied by Sanofi on the instruction of the MHRA To get to this stage, numerous meetings had been held over a five-year period to discuss how the information would be designed to be most instructive both to the healthcare professional and the patient, working through the valproate stakeholder network meetings and the expert working group meetings at the MHRA. Following the failure of the first toolkit, patient groups are understandably on guard to ensure they are aware of problems. Worryingly, over a 10-month period INFACT found that the majority of women were not receiving the new pregnancy prevention programme from their doctor or pharmacist From December to February, INFACT collected information through a survey of 74 women, which showed: 80% received the white chemist boxes; 40% never received the patient information leaflet, and 41% received it only some of the time; and 78% had never received the small credit card-sized information, with the majority of them never having had warning stickers on their white chemist boxes. During appointments with healthcare professionals, approximately 40% had never discussed the PPP with their doctor, more than 60% had never been asked to sign the “acknowledgment of risk” form, and 73% had never had alternative medication suggested to them Those figures indicate that women continue to be failed by their healthcare professionals and pharmacists on the PPP, even though its legislative status has been recognised, with instructions given by the General Pharmaceutical Council to pharmacists and by the MHRA to healthcare professionals In the autumn of 2018 proof of the failure, in the form of videos and photographs, was passed to the MHRA and, in turn, to the enforcement agency for investigation, yet we are still awaiting a response to those investigations. The consequences of these findings are deeply troubling. They indicate that women and girls aged between 15 and 45 may still not be being given an informed choice about their medication. They are not being given any information about alternative medications that may be suitable for them, and they are not being asked to sign the “acknowledgement of risk” form by their GP or specialist. On collection of their valproate prescription, they are not receiving any instruction from the pharmacist, nor are they receiving the small credit card-sized information, the patient information leaflet or any warning stickers on the white boxes It is worth reiterating that approximately 27,000 women of child-bearing potential are still prescribed sodium valproate every year; that 70% of them have not been offered a change in their medication since April 2018 and the introduction of the PPP; and that approximately 19,000 women are therefore still at risk of becoming pregnant while being prescribed valproate with no instructions from either their doctor or their pharmacist In addition to the risks outlined earlier, INFACT has been made aware that folic acid does not have the desired affect when taking sodium valproate and that the dangers to the foetus are no longer dose-related, making it a possibility that all those exposed to valproate in the womb will be affected by it. I would therefore like to ask the Minister to clarify: what assessments have been done to ensure women prescribed valproate receive the PPP and are offered an alternative medication where possible? What assessments are taking place to calculate how many healthcare professionals, including GPs in surgeries and those in pharmacies, complete the PPP with their valproate patients? And what the enforcement agency intends to do to ensure those failing to comply with the PPP have penalties imposed to ensure they do not continue to do so? Finally, I would like to request that the Minister meet me and representatives from INFACT to discuss how we can make sure the PPP works for women, allowing them to make informed choices about their own health and the health of potential future children.
It is a pleasure to respond to this debate on behalf of the Government, and it is an honour to follow the hon. Member for Lancaster and Fleetwood (Cat Smith), who has secured an important debate. I wish to pay tribute to her and her constituents from INFACT, whom she mentioned The hon. Lady has rightly set out that, as Members of this House will be aware, valproate is a very effective treatment for epilepsy and bipolar disorder. For a few women with epilepsy, it may be the only effective treatment, and she rightly recognised that in her speech. However, its use is associated with serious side effects in children exposed to it during pregnancy; there is a 40% risk of persistent developmental disorders and a 10% risk of physical birth defects. Valproate should therefore be used to treat women of childbearing age only if alternative drugs are ineffective or not tolerated In April 2018, strengthened regulatory measures for valproate were introduced. They include a pregnancy prevention programme that aims to rapidly reduce and eventually eliminate pregnancies exposed to valproate. The hon. Lady asked a number of questions about the PPP. The challenge is to ensure that valproate is used by only those who need it, that they are fully informed about the risks in pregnancy and that treatment is closely monitored. Let me emphasise that it is vital that no woman stops taking valproate or any other anti-epileptic without discussing it with her doctor Valproate has always been known, since the time it was first licensed, to carry serious risks if taken during pregnancy. However, important questions have been raised about the extent to which women have been informed about the nature and magnitude of those risks over the decades. At the time valproate was first marketed in 1974, animal studies had shown that there may be a risk of birth defects. Health professionals were made aware of that and were expected to weigh the benefits against the risks. They were expected to prescribe valproate only in severe cases or those where there was resistance to other treatments. Difficult prescribing decisions sometimes had to be made Campaigners have highlighted minutes of a meeting of the Committee on Safety of Medicines in 1973—the hon. Lady referred to that—where it concluded that it would be best not to mention the risk of birth defects following the use of anticonvulsants in the information supplied with the medicine, but that doctors should be informed. At that time, it would have been the doctor’s responsibility to pass on information on side effects. Today, patients and doctors are expected to make decisions jointly, based on open communication about all the risks and benefits of a treatment Over the years, warnings have been issued to prescribers by the regulator when new evidence on risks in pregnancy has become available. In 1983 and 1993, communications went out to update prescribers on the growing evidence of the risks in pregnancy. In 2003 prescribers were warned about a possible risk of developmental delay in children exposed to valproate during pregnancy. Warnings were extended to include a risk of autism in 2010, and a further bulletin was issued in 2013. It was around that time that the full magnitude and nature of the risks of valproate in pregnancy first became known, following the long-term follow-up of cases of affected children Given the seriousness of the accumulating evidence, the Medicines and Healthcare Products Regulatory Agency initiated a major Europe-wide safety review of valproate in pregnancy, which was completed in November 2014. The conclusion was that the balance of the benefits and risks of valproate in epilepsy and bipolar disorder remained favourable in women of childbearing potential only when other drugs were ineffective. The MHRA went further than updating the statutory information, as required by the EU review, and developed the valproate toolkit for healthcare professionals and women, which consists of a set of clear and informative materials. More than 100,000 healthcare professionals have received the toolkit As the hon. Lady referred to in her speech, in the autumn of 2015, given the importance of the issue, the then Life Sciences Minister, my hon. Friend the Member for Mid Norfolk (George Freeman), brought together all the relevant healthcare bodies to support the promotion of the toolkit and ensure that co-ordinated messaging was given out to health professionals and patients. The MHRA further developed this group into a 39-strong stakeholder network of health system organisations, health professional bodies, charities and campaign groups, which has been convened 11 times to date, to raise awareness and to help to embed the new measures in practice Despite extensive work to communicate the risks of valproate, concerns about the limited impact of the action in the UK and other member states led to a further EU review, which in 2018 resulted in a strengthened regulatory position stating that valproate must not be used in women of childbearing age unless they comply with the requirements of a pregnancy prevention programme. All healthcare professionals who prescribe valproate to female patients must ensure that they are enrolled in the pregnancy prevention programme. That ensures that women must use effective contraception throughout their valproate treatment and have an annual review with a specialist, which includes the consideration of alternative treatments, and must sign an annual risk acknowledgement form I am sure the hon. Lady will know that in February 2018 the then Secretary of State, my right hon. Friend the Member for South West Surrey (Mr Hunt), announced that he had asked Baroness Cumberlege to lead the independent medicines and medical devices safety review, which is exploring what happened in the cases of valproate, Primodos and mesh and considering the robustness of processes, the quality of engagement with and response to patients’ concerns, and any wider lessons. As I am sure the hon. Lady does, I welcome that important work and look forward to seeing the recommendations from the review. It is vital, though, not to wait for the outcome of the review. Much work is being done, and will continue to be done, to ensure compliance with the valproate pregnancy prevention programme. We expect the review to report later this year. It has been consulting in a detailed and patient-orientated manner throughout the UK, with patients and relevant patient and healthcare organisations The hon. Lady raised a number of issues with the pregnancy prevention programme. The MHRA has monitored the impact of the programme closely since its introduction last year. Monitoring is being done via data from the clinical practice research datalink and national databases, which link data from community drug dispensing and maternity services. The MHRA is also accessing data from clinical audits run by healthcare professional organisations and information on patient experience via surveys Patient input and engagement with the patient group INFACT, to which the hon. Lady referred and which was started by her two constituents, has been invaluable throughout the process, as a source of both evidence and feedback on the implementation of action. The data shows a decline in the use of valproate in women of childbearing age, but we recognise that there is local variability. I am also aware of evidence of non-compliance by some healthcare professionals, which is of great concern. Non-compliance with the pregnancy prevention programme is not acceptable, and those concerns are being investigated to ensure that people are brought back into compliance. I can inform the hon. Lady that enforcement action will be taken as and when necessary The concerns that were raised in the survey that the hon. Lady referred to have led the UK chief pharmaceutical officers to contact all pharmacists to stress their responsibilities when dispensing valproate. This was reinforced by messages from professional regulators to their members and by articles in the MHRA’s electronic bulletin “Drug Safety Update” in September and again in December, making sure that all healthcare professionals recognise that they need to examine whether they are prescribing in compliance with the new measures Achieving full compliance with the valproate pregnancy prevention programme will require concerted action across the healthcare system. I recognise that there is more to do, but I stress again that healthcare professionals who prescribe the drug must make sure that their female patients are enrolled in the pregnancy prevention programme. As I have said, non-compliance is not acceptable The hon. Lady asked a number of other questions, some of which I hope I have answered during my speech. My noble Friend Baroness Blackwood specialises in this area and will take the lead in it. I know that she would be delighted to meet the hon. Lady and members from INFACT I thank the hon. Lady for highlighting this issue and pay tribute not only to her constituents, but to many other women who have spoken powerfully about the effects that valproate has had on their lives and the lives of their children. Their tireless campaigning has been vital in highlighting the further action that is needed to ensure that women know the risks and are helped to make an appropriate judgment about their treatment. It is vital, therefore, that all healthcare professionals work together rapidly to reduce and eliminate the exposure of pregnancies to valproate I hope that the action I have outlined today shows that steps are being taken to ensure that the necessary assessment, monitoring and, where necessary, enforcement action will be taken. In commending the hon. Lady, I hope that she, like me, will look forward to Baroness Cumberlege’s review, which, as I said, should be published later this year. I thank her once again for raising this important matter this afternoon Question put and agreed to.