Terminally Ill People: Access to Benefits — House of Commons, 2021-02-22
Topic: Health
Justin Paul Tomlinson (Conservative, Centre-right): I will first pay tribute to the hon. Member for Newport East (Jessica Morden). There is little in her powerful and constructive speech that I can disagree with. She demonstrated that with her private Member’s Bill, which could have had a second hearing but for the recent suspension of Friday sittings, so I very much welcome the fact that she has had an opportunity to set out her case. Her former colleague, Madeleine Moon, was formidable in our meetings, drawing from her personal experiences to help shape and focus our work as we went forward. This issue has much interest from cross-party MPs not just here in Parliament but in the devolved Assemblies across the UK; health and disability charities and stakeholder groups; public advocates such as Charlotte Hawkins, a patron of the MND Association; and individual campaigners up and down the country, including Mark Hughes, Liam Dwyer and Sandra Smith, who have brought the campaign to Westminster and spoken to the hon. Member for Newport East and me I absolutely understand the importance of this issue and the need to make changes, as does the Department. This debate is focused on special rules for terminal illness, or SRTI. For an individual and their friends and family, receiving a terminal diagnosis is devastating. Supporting people in this difficult situation is crucial, and the SRTI ensure that financial support can be provided as quickly as possible, so that the claimant can focus on what time they have remaining On the basis of this issue being raised by that extensive list of interested MPs, stakeholders and campaigners, we rightly agreed to do a full and comprehensive review of the support we offer that focused on four strands. The first was hearing directly from claimants and charities about their first-hand experiences. We had claimant engagement, including drop-in sessions and conversations with claimants with cancer and motor neurone disease. We also held extensive stakeholder workshops and meetings with organisations including the Motor Neurone Disease Association, Macmillan, Marie Curie, the Multiple System Atrophy Trust, Sue Ryder, the National Bereavement Alliance, Hospice UK, the National Nurse Consultant Group, the Association of Palliative Care Social Workers, the British Lung Foundation, the Queen’s Nursing Institute, the Association for Palliative Medicine, the Royal College of Physicians and the British Geriatrics Society, among others. I wish to thank them for the huge amount of time and resources they dedicated to help ensure that the changes we bring forward are the right ones that work Secondly, we looked at international evidence to find out what works in other nations and what support they provide. That included looking at 22 separate countries. Thirdly, we reviewed current DWP performance to better understand how our SRTI rules and severe condition processes operate and perform, including a full audit of the DS1500, in-house staff research and a clinician survey, which more than 1,000 clinicians took the time to complete to give us helpful advice and information. Finally, we had clinical engagement, where we discussed the SRTI with palliative care experts at end-of-life clinical groups, including Professor Bee Wee, the national clinical director for end of life care. As we promised, this was a comprehensive review It was very clear from the findings of those discussions that there is a lack of consistency. A key theme that came up was: why is this not aligned with national palliative care initiatives? That leads to duplication. I spoke to GPs, and they said to me that one of the worst roles they have to perform is explaining to a patient that they will now be entering the terminal illness phase, with the administering of palliative care. That is done at 12 months, and if someone wishes to have a DS1500—which, to be clear, is not the only way to access the SRTI, but it is probably the easiest—the GP has to have that same awful, tough conversation. That is not good for GPs, because it is a duplication—that is an obvious example of something that should be reviewed as part of the Government’s commitment to create an additional 50 million GP appointments a year—and it is not good for the claimant or their friends and family who are providing support We also discovered from the findings that there is mixed awareness of the support that is available. We recognise that some people are not getting the support because they simply do not know that it exists. As I have previously confirmed on the Floor of the House when asked by other MPs, we agree that there needs to be a change. The status quo is not acceptable, and the three themes will address raising awareness, improving consistency and changing the six-month rule I understand the frustration about the delays, and as the Minister I am very sorry that we have not been able to bring in these changes quicker—I dearly wish that I was in a position to have done that—but this is complex, and there are a number of issues. First, as the hon. Lady alluded to, covid has caused issues. We needed clinical evidence and engagement to ensure that we were making the appropriate changes, because the reality is that if we propose something that does not work for the NHS, and for GPs and health professionals, this will simply not work. That is the challenge that the Scottish Government are facing. They announced their changes long before us, and although they still hope to legislate this year, they are far further away from being able to make changes than we are. In effect, they had very laudable hopes to allow anyone with a terminal illness to be able to access this fast-track support. The problem is in relation to people who are terminally ill from the day they are born. The Scottish Government would not accept that a day-old baby should then get access to this, so they now have to apply conditions that limit access for those they were intending to give it to, which means that they are in danger of creating a far more complicated system, which would not be welcomed by health professionals and clinicians, than the current status quo that we all agree should change. I have spoken to the Scottish Government and urged them to look closely at the changes we are proposing. Hopefully we can have a united and consistent approach across the whole UK Covid did cause delays in completing the review. It has also caused delays because the reality is that the changes we wish to make are extensive and will require primary legislation. That has to be lined up with the Department of Health and Social Care, and I have to do that at a time when health professionals and my Front-Bench colleagues are tackling covid.