Terminally Ill People: Access to Benefits

Jessica Morden Excerpts

Monday 22nd February 2021 Commons Chamber

[Jessica Morden (Newport East) (Lab)]

I have brought this debate to the House tonight to urge the Government to announce the results of their review of how the benefits system treats the terminally ill. The review was announced over 19 months ago now, on 11 July 2019, in response to campaigning by charities Marie Curie, the Motor Neurone Disease Association and others. I pay tribute to those charities for all their work on this issue and their support for me in bringing forward my ten-minute rule Bill, the Welfare (Terminal Illness) Bill, last summer. I also thank individual campaigners like Mark Hughes, Dave Setters and so many others who have continued to make a compelling case for change. The same is true of my friend Madeleine Moon, the former MP for Bridgend, who did so much good work on this issue during her time as chair of the all-party group on motor neurone disease. She had first-hand experience of the mental and emotional toil that comes with supporting a loved one with terminal illness. The Bill she brought to the House on this issue in 2018 is the inspiration for the Bill that I brought forward last summer. I have no doubt that the pressure exerted by these and other extraordinary individuals and organisations was instrumental in pushing the Government into announcing the review in July 2019.

So on their behalf, I again call on the Government today to take urgent action on two elements of the special rules for terminal illness guidelines that are not fit for purpose: the six-month rule, which means that someone is obliged to provide medical proof that they have six months or less to live so that they can access benefits quickly, more sensitively and at a higher rate; and the three-year award, which forces terminally ill people to reapply for benefits in the minority of cases where they are lucky enough to live longer than three years after the benefit is awarded. The special rules for terminal illness process is intended to enable people who are terminally ill to access benefits such as the personal independence payment or universal credit rapidly at the highest level of payments without going through the standard application process. Claiming under the special rules requires the person’s doctor, consultant or specialist nurse to submit a DS1500 form stating that the person is reasonably likely to die within six months. That forces people who have unpredictable terminal illnesses such as motor neurone disease or those expected to live longer than six months to apply via the standard claims process, which involves filling in long forms, attending assessments, delays in payment, lower rates, and even meeting work coaches—all while waiting months for payments. Clearly, that is highly inappropriate for people who have been given the devastating news that their condition is terminal.

The six-month rule is flawed and urgently needs to change. The all-party group on terminal illness, chaired by the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), found in its 2019 report that it was outdated and arbitrary with no basis in clinical reality. This six-month hard deadline is too much to ask of carers and claimants. It creates a completely understandable resistance to applying, prompting the added pain of writing down the grim reality of daily life and the inevitable future darkness. It gives no hope, no joy in life in a world where hope and joy are often all that can keep you going. In the case of unpredictable illnesses like MND, heart and lung failure and many neurological conditions, it is all but impossible for clinicians to make an accurate prediction of life expectancy. It is little wonder that nearly a third of clinicians told the all-party group that they have never signed a DS1500 form for a patient with a non-cancer condition. That means that patients like Simon, who was diagnosed with MND in December 2020, are not able to access the special rules. His wife Nichola told the MND Association:

“The doctor said that the DS1500 was designed for cancer patients…He looked at Simon and said ‘you won’t be dead in six months’. We had to complete the whole form and apply under the standard rules. It’s so long winded, so time consuming because you just don’t think about how long you spend on helping him get dressed etc. People need that support…often it feels like you’re banging your head against the wall.”

This unpredictability is why the three-year award also needs to change. Half of all people with motor neurone disease, for example, die within two years of being diagnosed, while only around 10% live for more than five years, but there is no reliable way for doctors to determine who that 10% will be, and, as with many progressive illnesses, their condition has no prospect of improvement and will only deteriorate further as time goes on. Emma Saysell, from the wonderful St David’s Hospice in Newport, tells me it is seeing more and more cases of cancer patients having to reapply for benefits with the DS1500 after three years. That comes in part due to improvements that have been made in palliative treatment, but while patients are living longer, they are still living with a terminal illness.

One particular example St David’s presented to me was of a lady in her mid-40s diagnosed with advanced breast cancer. The lady’s prognosis at diagnosis was very poor, and she had two teenage children. It was quite right to submit the DS1500 at diagnosis. Her disease is still progressing, but due to the palliative chemotherapy she has received, the process has been slowed, and she has now lived longer than three years. She has recently had to reapply for all her benefits due to the three-year rule, which has been hugely stressful for her and her family.

It is a clear anomaly that terminally ill people are awarded benefits for only three years. Employment and support allowance claimants with progressive conditions are entitled to the severe conditions exemption, meaning that they do not have to repeat work capability assessments, while higher-rate PIP claimants can qualify for an ongoing award, with a light-touch review after the 10-year point. It is cruel and absurd that people living with a lifelong condition are entitled to a 10-year or lifetime award, while those with terminal illnesses have been told they must reapply for benefits or risk losing them after just three years. Those who do happen to live longer than three years tell me they feel they are being punished by the system for living too long.

It is now seven months to the day since I presented my ten-minute rule Bill, and more than 19 months since the then Secretary of State, Amber Rudd, announced a review of how the benefits system treats terminally ill people. In all that time, we have had no official word from the Government on when they intend to bring forward these vital and long-awaited changes to the benefit system.

[Matt Western (Warwick and Leamington) (Lab)]

I commend my hon. Friend for the campaigning work she has been doing on this issue for an extended period, following the work that Madeleine Moon was doing. Scotland introduced its changes to SRTI back in 2018. Does my hon. Friend agree that it is seems very late for the Government here not to have done anything about it? This is all about funding people who desperately need money in the last few months of their lives.

[Jessica Morden]

I thank my hon. Friend for that contribution, and he reads my mind—I am just about to come to that section of my speech. This is an issue across the whole UK, and the devolved Governments of Scotland and Northern Ireland appear to be treating it as a higher priority than the UK Government do. The Scottish Government passed a law to change the six-month rule for devolved benefits back in 2018, and that will be coming into force later this year. The Northern Ireland Assembly unanimously backed a motion to scrap it in October, and the Executive are proactively looking to fix this issue and deliver reform quickly. Why, then, is Westminster dragging its heels?

When I introduced my Bill last July, the Minister for Disabled People, Welfare and Work indicated that change would be coming shortly. He confirmed in the House on 19 October last year that the Government would be changing the six-month rule following their review. However, all this time later, we are still waiting to hear exactly what it would be changed to and when that change will be introduced. If Ministers have made up their minds that change is needed, why is there any need for further delay? Why the long silence?

Every day the Government postpone an announcement on the outcome of their review, more people are diagnosed with a terminal illness and risk being unable to get fast-track support from the benefits system if they cannot prove they have less than six months to live. These people are facing exactly the kind of inappropriate medical and work capability assessment that the special rules for terminal illness are supposed to exempt them from before they can access the support they need. They also face huge delays in getting payments. The average wait for a first personal independence payment is now 16 weeks, at a time when someone’s illness may mean that they cannot work and have no other money coming in. These are people like Alan, who has terminal pulmonary fibrosis, and who told Marie Curie:

“When I was diagnosed, I was told I would have five years’ life expectancy, as an average. Day to day, it affects everything I do. I can’t get dressed by myself. I can’t go to the shop by myself. I get very breathless doing anything. When I first applied for PIP, they were very dismissive. One of the things they did was, because I walked from a lift to a room, which was about 10 steps—on that basis they judged I could walk 200 yards. Because I was refused PIP, I couldn’t get hold of things like a parking card or a discount for train travel. So, I was in receipt of no benefits at all, although I do have a terminal illness, which gets worse year after year, month to month.”

For some, that delay will mean they die without receiving any support at all. Between April 2018 and October 2019, 2,140 people who applied for PIP—only one of the benefits affected by this rule—had their claim turned down under the normal rules only to die within six months of making their claim. Many of them will have been terminally ill people unable to claim via the special rules because they could not prove they had six months to live.

Even when the DWP does accept a claim, that often comes too late. According to the DWP’s own figures, an average of 10 people die every day while waiting for a decision on their PIP claim. End-of-life charity Marie Curie estimates that that means more than 5,900 people have died waiting for a decision since the DWP announced its review. That is nearly 6,000 families put through needless distress and anguish, and more will face it every day because of a rule that the Government have already admitted needs to change.

That is families like Michelle’s. Her mum, who died aged 62 in 2018, was initially awarded zero points for PIP and told she was capable of working. She was hooked to a feeding tube 16 hours a day, seven days a week and weighed 32 kilograms when she died. She had several illnesses including Crohn’s, osteoporosis and terminal lung cancer, yet she was awarded nothing. Michelle took her mum’s case to a tribunal, but by the time the decision came back that her mother should be awarded maximum points for PIP, she had died. Michelle says:

“This should have been money that my mum had to make her final days better. It should never have gone as far as a tribunal.”

Dying people deserve to be treated with dignity by the benefits system. Nobody given the devastating news that their illness is terminal knows how long they have left—not their loved ones, not their doctor and not a DWP benefits assessor. However much time they have left should be spent living as well as they can for as long as they can, making memories with loved ones. It should not be spent worrying about money, filling in endless forms, being dragged to assessments and fighting for the support they need. As Madeleine Moon said back in 2018,

“The unknown time you have must not be spent worrying about accessing benefits or keeping a roof over your head; it must be spent in love, laughter, and taking the painful journey together with dignity and compassion.”—[Official Report, 18 July 2018; Vol. 645, c. 456.]

People living with terminal illness and their loved ones have been campaigning tirelessly for change for more than two years. Many of them will not have lived to see the change they have fought for: an end to the six-month and three-year rules and a change to the system to allow anyone who has received the devastating news from a clinician that they are terminally ill to get fast-tracked access to benefits via the special rules. The clinician’s judgment should be evidence enough.

We all understand that since the Government announced their review there have been unforeseen circumstances with covid-19, but people do not have time to wait further. For the past 19 months, they have been waiting in a frustrating limbo, told that change is coming but with no announcement in sight from Ministers. They, and the charities campaigning on their behalf, are understandably impatient with 19 months of warm words from the Government and promises that change is always coming soon. For many, soon is already too late and, with each day that passes, soon will be too late for many more.

I urge Ministers to do better than soon. Will the Minister give us a date today for when the outcome of the DWP review will be published, give the campaigners who have called for change some clarity and give us a timeline setting out when the Government will make the changes to the law, which they have already accepted are needed, without further delay?

[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.