argyrotsipi/train-dataset huggingface dataset:
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): I congratulate my hon. Friend the Member for North East Somerset (Mr Rees-Mogg) on securing this important debate on what is a heartbreaking issue, as I am sure you will agree, Mr Speaker. He and other Members have spoken up movingly and with great passion about and on behalf of their constituents, and I am grateful to them for doing so. I understand how vital it is for patients and their families to be able to access new medicines as quickly as possible. This is one of the hardest types of debates that one has to respond to as a Minister, when we can put ourselves in the position of the families up and down the country who are facing such a desperate situation I will endeavour to respond as fully as I can to the issues that my hon. Friend and other Members raised, but I should begin by saying, sadly, that I am unfortunately unable to comment on matters relating to the availability of Brineura, a drug used to treat Batten disease, as this is currently subject to an active judicial review procedure As we have heard from hon. Members, Batten disease is a terrible condition that progresses rapidly, leading to loss of speech, mobility and vision, progressive dementia and early death. It is a rare genetic disease, and it is estimated that around three to six children in the UK are diagnosed each year, with around 30 to 50 children living with the condition. Current treatment options are limited to symptomatic relief and supportive care. I fully understand how vital any new treatment option could be to the families of children with this rare and devastating condition The Government want patients, including those with rare diseases such as Batten disease, to be able to benefit from effective new treatments. It is in the interests of all NHS patients that we have a system in place for making evidence-based—
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): Thank you, Mr Speaker. You have made my position even more difficult. I am very grateful for your advice The advice I have been given by the legal team within the Department of Health and Social Care is that anything I say could potentially influence the outcome of judicial proceedings that may be ongoing.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
John Simon Bercow (Conservative, Centre-right): The Minister is nothing but solicitous and courteous. I have found her unfailingly courteous in her dealings with me over many years, and I certainly do not seek to make life difficult for her, but my concern is with the rights of Members of this House and of the people they are here to represent Frankly, if lawyers within the Department of Health and Social Care are of that view, it would have been courteous to consult the officials of the House. As far as I am aware, the officials of the House have not been consulted, and I have not been consulted about this matter. I am simply saying that if the Minister wishes to respond to the specifics, which manifestly the hon. Member for North East Somerset (Mr Rees-Mogg) was going to raise—that is the rationale for the debate—it is perfectly open to her to do so If the hon. Member for North East Somerset is not able to secure satisfaction on this occasion—the Minister must judge what she wants to say in response—and if he wishes to pursue the matter further in another Adjournment debate, during the course of waiting for which further time will unfortunately have been lost, that debate will be available to him. I am determined that this matter will be effectively raised in the Chamber of the House of Commons by the hon. Gentleman and by other Members.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): I know that the Secretary of State met the hon. Lady and other Members recently, and this is something that he cares about passionately. We are doing everything we can in the Department of Health and Social Care to try to move the position forward. The hon. Lady is right to say that had this issue been satisfactorily resolved, we would not be having this discussion at all, we would not be talking about legal proceedings and the situation would hopefully be a lot easier to resolve I have only a short amount of time left to be able to give some sort of response to my hon. Friend the Member for North East Somerset.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): Thank you, Mr Speaker. The legal position, as I understand it, is that NHS England and NHS Improvement have been in discussions with the manufacturer BioMarin for some time to try to seek a deal that would enable NICE to recommend the drug for use on the NHS, but so far an agreement has unfortunately not been possible. As hon. Members know, and as I said at the beginning of my speech, NICE’s assessment is currently subject to an ongoing legal procedure. NICE has published its draft recommendation and was unfortunately unable to recommend the use of the drug, despite its meeting the criteria for consideration under the highest cost-effectiveness threshold. NICE has not yet re-published its final word on this issue, and that may provide more clarity. In the meantime, it is of course open to the company to enter into an agreement with NHS England that would make the drug cost-effective and would make the legal procedure unnecessary.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): I do not think it would contravene any legal recommendations if I were to say that if the manufacturer, NHS England and NICE were to get around a table and agree a satisfactory price, there would be no need for the legal challenge. In actual fact, the desperately poorly children we have heard about today would therefore be able to get the treatments that they desperately need.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): That is a really good question, and I think that is one reason why NICE is looking again at its systems. It must be possible, because around 80% of new drugs are recommended for NICE approval and approved by NICE. It is clearly possible for new drugs to make it through even when they have not been around for a long enough period to see the very long-term consequences of their impact. It is really important in cases such as this, in which the opportunity—
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): In a moment The advice that I have been given is that I have to be very careful on the legal procedure because of the fact that it is not a legal procedure between individuals and the Department, but between individuals and NICE. I do not want anything that we say potentially to negatively impact on a family’s opportunity to get these very important drugs for their children.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
John Simon Bercow (Conservative, Centre-right): Very important decisions are subcontracted to NICE, but policy responsibility, as the hon. Member for North East Somerset has pointed out, is that of the Government. We do not have Government by NICE; we have Government in the case of health policy through the Department of Health and Social Care.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): We are in a difficult position because the advice that has been forthcoming from the Department of Health and Social Care is not the same as the advice being given by the brilliant Clerks here. That puts me in a very difficult position, which is why I would like to commit to returning to the House with a statement once I have been able to pursue this matter a little bit further The Government want patients, including patients with rare diseases such as Batten disease, to be able to benefit from effective new treatments. It is in the interests of all NHS patients that we have a system in place for making evidence-based decisions on whether new medicines should be made routinely available to patients. That is why we have NICE, which makes independent, evidence-based recommendations for the NHS.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): NICE now operates two separate programmes for the assessment of new medicines: first, a technology appraisal programme through which NICE assesses the vast majority of new medicines; and secondly, a highly specialised technologies programme that is reserved for the evaluation of very high cost drugs for the treatment of very small numbers of patients suffering from very rare diseases in England who are treated in a handful of centres in the NHS Where NICE recommends a treatment for use on the NHS, NHS commissioners are legally required to make funding available so that it can be prescribed to patients. This is reflected in the NHS constitution as a right to NICE-approved treatments. The intention of NICE is to have a system that means that the public can have confidence that the price paid by the NHS is consistent with the improvement in health outcomes that the medicine brings, ensuring fairness and the best possible use of funding for patients and the NHS. As I said to the hon. Member for Newcastle upon Tyne North (Catherine McKinnell), NICE has recommended around 80% of products it has assessed. Through its important work, many thousands of patients, including patients with rare diseases, have benefited from access to effective new treatments It is right that NICE’s processes continue to evolve with developments in science, healthcare and the life sciences sector. That is why it keeps its methods and process updated through periodic review that includes extensive engagement with stakeholders, including patient representatives, drug manufacturers and clinicians. In this spirit of continuous development, through the 2019 voluntary scheme for branded medicines pricing and access, which was published in December, the Government announced that NICE would be undertaking a review of its methods and processes in 2019-20 for both its technology appraisal and the highly specialised technologies programme.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): Yes, I will come back and make that statement before the House rises for the summer recess, with the correct legal recommendations The NHS review of its methods and processes has now begun. That will be quite helpful for some hon. Members who are questioning whether those processes are as they should be. Although I do not think it would not be appropriate for me to pre-empt the review by commenting in detail on its scope, I can assure hon. Members that it will be wide-ranging and will be carried out with full consultation with stakeholders My hon. Friend the Member for North East Somerset spoke about access to the new drug Brineura for his constituent Max. NICE is currently developing recommendations for the NHS on the use of Brineura through its highly specialised technologies programme for the evaluation of drugs for the treatment of patients with very rare diseases. It has not yet published that final guidance. I understand that NHS England and NHS Improvement have been in discussions with the manufacturer of Brineura, BioMarin, for some time to seek a deal that would enable NICE to recommend the drug for use on the NHS, but an agreement has unfortunately not been possible so far. As I said at the beginning, NICE’s assessment of Brineura is potentially going to be subject to legal proceedings Let me move on to individual funding requests. Where a treatment is not routinely available on the NHS, including where NICE has not yet made a recommendation on its use, NHS clinicians are able to apply for funding through an individual funding request. This can be done when a clinician believes that their patient is clearly different from other patients with the same condition, or where their patient might benefit from the treatment in a different way from other patients In the absence of NICE’s final recommendations on Brineura, I am aware that NHS England and NHS Improvement have recently considered an individual funding request for my hon. Friend’s constituent Max that it has unfortunately been unable to support, because he would not be regarded as an exceptional case to existing policy. I understand how devastating that decision will be for Max, his parents and all those involved. However, if my hon. Friend’s constituents and their clinicians think that the process has not been followed correctly, they can ask for a review of the decision within 28 days. If a patient’s situation changes or more clinical evidence becomes available about the effectiveness of a treatment, they may also submit additional information to be considered and discussed.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Caroline Julia Dinenage (Conservative, Centre-right): My understanding is that if the manufacturer of this vital drug gets around the table with NICE and suggests a price within a reasonable scale, NICE would be very opening to listening. That is my understanding. Certainly, I understand calls from Members across the House for NHS England, NICE and the manufacturer to get around the table to try to find a solution. That seems to me to be the most sensible way forward.
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
Andrew James Griffiths (Conservative, Centre-right): I thank the Minister for giving way again. The language she is using is the same as that we hear in a lot of these debates. She has said that many of these families and young children are receiving the drug on compassionate grounds from the drug company. For a parent whose child is not getting that drug to be told that somebody else’s son or daughter is getting compassion but theirs is not—the Minister is a mother herself, so she will understand this—is like a dagger through the heart. Will she do all she can to ensure that that compassion is extended to all those mums and dads who are looking on tonight?
Batten Disease: Access to Drugs — House of Commons, 2019-07-16
Topic: Health
John Simon Bercow (Conservative, Centre-right): Ordinarily, the proceedings would now conclude, and they will do so shortly. However, I think it important that our proceedings should be intelligible not only to right hon. and hon. Members but others who are interested in our proceedings but are not Members of this House. To try to achieve that objective, I want to add, by way of conclusion, the following I am advised by my officials that the Department of Health and Social Care claims that this matter—the subject of the debate—is sub judice because an application for a judicial review has been made. In the light of that, let me explain. Under the sub judice resolution of this House, "Civil proceedings are active when arrangements for the hearing, such as setting down a case for trial, have been made" The Department has not supplied evidence that this test is met. Therefore, I stand by what I said earlier on advice By way of conclusion, I say to the Minister—echoing, I think, the sentiments of colleagues—that her commitment made in the circumstances, at very short notice, to return to the House before the summer recess to make an oral statement is appreciated, and we look forward to that statement taking place either tomorrow or on Thursday. Policy is a matter for the Government and not the Chair, but the hon. Member for North East Somerset and other colleagues who are similarly interested may rest assured that, for so long as this matter is not resolved to their satisfaction and they wish to bring it to the House for questioning, interrogation and debate again, as far as the occupant of the Chair is concerned, there will be multiple opportunities for them to do so. The matter will not go away I thank the Minister once again for her courtesy and consideration in difficult circumstances, and I thank all Members who have contributed to the debate not on their own accounts but in the interests of their constituents, very anxious parents and families, and sympathetic people right across the country Question put and agreed to.
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
Mark Lancaster (Conservative, Centre-right): Halfway through the recruiting year, approximately 70% of the Army’s regular soldier requirement have either started training or are due to do so. In addition, direct entry officer and reserve recruitment targets are all expected to be achieved.
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
Mark Lancaster (Conservative, Centre-right): I think we are doing a lot, actually. As I said, we need only look at this year, where all the signs are very positive. The real challenge we have faced recently has been in the other ranks in the Army. Officer entry is full, and the Army reserve is growing. The target for other ranks in the Army is 9,404. We have already achieved 70% of that target in the first six months. The second we get to 80%, Army numbers, assuming that outflow remains constant, will remain the same and will not reduce. In every single other rank where we manage to recruit over 80%, that will mean an increase in Army numbers. Within the first six months, we have already achieved 70%, so we have 10% more to do within the next six months to maintain numbers, and everyone after that will represent an increase in Army numbers.
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
Mark Lancaster (Conservative, Centre-right): I am very proud that there are now no roles in the British Army that are not open to women, so all ground and close combat roles are open. We have seen the first women join the Royal Armoured Corps. We also have women in training to join the infantry. I cannot give my hon. Friend an exact number, but I will write to him with that detail.
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
Mark Lancaster (Conservative, Centre-right): No, that is certainly not the case. It is certainly true, to quote Stalin, that: "Quantity has a quality all its own." However, the modern armed forces are very different from those of the 1980s. We need only look at the Queen Elizabeth, our new carrier, which, compared with Ark Royal, her predecessor, has a complement that requires just one quarter of the number of crew.
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
Tracey Elizabeth Anne Crouch (Conservative, Centre-right): Kent is proud to host a number of Gurkhas across the country, including within the Queen’s Gurkha Engineers, currently located at Invicta Park barracks just outside my constituency. Will my right hon. Friend join me in welcoming the number of personnel in the Brigade of Gurkhas, which has increased by 25% in the past four years?
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
Mark Lancaster (Conservative, Centre-right): I have to declare my interest: the first Army unit I joined was the Queen’s Gurkha Engineers back in 1988 in Hong Kong. I am delighted that, speaking off the top of my head, we currently have 69 and 70 Gurkha Field Squadrons serving in Invicta barracks in Maidstone. I am also pleased to be able to announce that the aspiration is to create 67 Squadron from 2021, and a second further Gurkha engineers squadron, 68 Squadron, from 2023, so the Brigade of Gurkhas continues to grow.
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
David Michael Davis (Conservative, Centre-right): I have listened to the Minister’s answers, and he intimated that we are replacing quantity with quality. Much of this problem goes back to the Capita contract for recruiting soldiers, sailors and airmen, which was massively criticised in a Public Accounts Committee report earlier this year in terms of both quantity and quality. Today, 10% of our troops are incapable of deployment abroad for medical reasons. What can he do to fix those problems?
Army Personnel — House of Commons, 2019-10-21
Topic: Defense
Mark Lancaster (Conservative, Centre-right): Let us be clear: the House is absolutely right to scrutinise this Government over recruiting into our armed forces. I welcome that, because it enables me to put pressure on our service chiefs. While there were, without doubt, challenges with that Capita contract, I have explained today how we have already reached 70% of our target within the first six months of this year. That contract is now performing in a way that it was not before. My right hon. Friend is right about medical standards, which is why there is a series of reviews at the moment about how we can prevent those injuries from happening in the first place.
Strait of Hormuz: UK Shipping — House of Commons, 2019-10-21
Topic: Defense
John Charles Baron (Conservative, Centre-right): No matter how capable, a Royal Navy ship cannot be in two places at once. On this anniversary of the battle of Trafalgar, given that 95% of our trade is seaborne, is it not obvious that we need a much larger surface fleet, including a larger number of cheaper ships, if we are to play our full part in keeping world sea lanes open?
Strait of Hormuz: UK Shipping — House of Commons, 2019-10-21
Topic: Defense
Robert Ben Lobban Wallace (Conservative, Centre-right): I agree strongly with my hon. Friend’s point, which is why this Government have invested in not only the new Type 26 frigate but the Type 31, which will be designed to be more affordable and will increase the overall number of frigates and destroyers that we are able to deploy. In this example, we very quickly managed to have four ships in the region to tackle the problem. We have now gone back down to supplying two ships there, but it was not the case that we could not get ships in the right place at the right time.
Strait of Hormuz: UK Shipping — House of Commons, 2019-10-21
Topic: Defense
Robert Ben Lobban Wallace (Conservative, Centre-right): I am, of course, delighted to agree with the hon. Gentleman about the amazing quality that they bring to our armed forces. I am a landlubber, as a former soldier, so I can only marvel at what I have come across so far in this job.