Terminally Ill People: Access to Benefits
(Limited Text - Ministerial Extracts only)
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The Minister for Disabled People, Health and Work (Justin Tomlinson)
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.
Jessica Morden
I know that the Minister is sincere about this, but could he give us some idea of a timescale? Will he also meet me and campaigners urgently to explain this in person?
Justin Tomlinson
That is absolutely a fair challenge. I do regularly meet those groups and have kept them engaged throughout the process, as I recognise how much they have invested in ensuring that we made the right proposals for change. Because of the importance and seriousness of the issue, they are understandably desperate for these measures to be brought forward, and that is an aim that my Department and I share. We hope that we are in a position in the coming months to set out the timetable to start bringing forward the changes. We have already done the bits for which we do not have to legislate; we always made it clear during the review that if there were things we did not need to legislate for, we would get on with them.
We discovered that the information on gov.uk was not good enough—we have improved that—and that not all clinicians were up to speed on the DS1500. Again, working with DHSC, we were able, before covid came, to ensure that the advice and guidance given to clinicians was increased. We are working at pace to get that legislation lined up. It is crucial that we do it in a way that works with the NHS and across Government, and that is an absolute commitment.
We are also determined to go further. From talking to stakeholders, it is clear that there are other things we can improve—for example, for those who might not quite be in the terminal illness area, but for whom the current system is not quick and simple enough. In the forthcoming health and disability Green Paper, we will be exploring a number of themes. Again, those groups will be proactively supporting our work to help to change things. First, the ability to access supportive evidence needs to be more consistent. In some cases, it is a postcode lottery. Clear supportive evidence increases the chance of a paper-based review, and a quicker, simpler and more accurate outcome. We want to look at existing evidence on the principle of “tell us once”. That is a cross-Government thing—that, ideally, those awful conversations should only ever have to happen once. That information is then populated across all the support, and that helps the claimant.
I want to look at a broader range of evidence. For example, would I need a GP to tell me that somebody has MND if they are getting support from an MND nurse? Why would the nurse be providing support unless that person had MND? That is a really simplistic example, but there are many examples from the many charities and organisations that provide palliative care. Can we not give greater strength and credence to their supportive evidence?
I also want to look at advocacy. The benefits system is complex at the best of times, and, as the hon. Member for Newport East so articulately said, in those final moments, when every moment is so precious, we do not want to be navigating something that is complicated. We want to look at the role of friends, family and advocates. Again, regarding those examples of the Macmillan nurses, the Sue Ryder nurses and the MND nurses, how can they be more involved in the application and the securing of that support?
We also need to look at the assessments themselves. During the covid pandemic, we have introduced telephone and video assessments. In the Green Paper, we want to explore this further. The key bit the stakeholders will be interested in is looking at reducing unnecessary assessments. Again, that is part of our commitment to create a quicker and easier route where the evidence is clear. That is building on a principle that we already have with UC and the severe conditions criteria. There are many positive lessons that we can learn from that and extend across the other benefits, and, as I have said, we can look at removing those unnecessary assessments.
On a broader level, through the forthcoming national strategy for disabled people, I want to look at, engage and consult on what more can be done across Government, because it is not just from the Department for Work and Pensions that people in this situation may need support, additional help and guidance. I want to see whether there are other areas where we can talk across Government to improve the situation. I would also like to look at the private sector. For example, Nationwide Building Society worked with Macmillan to improve its training, understanding and guidance to support cancer patients with its financial products. That is an exemplary example that we can look to build on and share, so that a more sympathetic, understanding and flexible approach becomes a given to people in these situations.
In conclusion, we are absolutely committed to bringing this forward as quickly as we can, and we are working across Government on this. Despite the covid challenges, despite the complexity, I am confident that we are getting close. We will look to improve and raise awareness and we will change the six-month rule. The Secretary of State and I are absolutely committed to that. I am full of admiration for the work that the hon. Lady and all of those supportive groups and campaigners have done on this vital matter. We absolutely agree that this is one of those rare issues that unites all political parties and all areas of devolved Assemblies. We are all agreed on this and we just need to find a way to deliver this complex, but crucial legislation.
Question put and agreed to.