Oral Answers to Questions

Debate between Justin Tomlinson and Jessica Morden

Monday 28th June 2021 Commons Chamber

[Jessica Morden (Newport East) (Lab)]

If her Department will publish the findings from its review of the special rules for terminal illness before the summer 2021 parliamentary recess.

[The Minister for Disabled People, Health and Work (Justin Tomlinson)]

The Department is committed to publishing the outcome of the evaluation, and it will be announced in due course. I understand that the delay has been frustrating, and I remain absolutely committed to delivering an improved benefit system for claimants who are nearing the end of their lives.

[Jessica Morden [V]]

As the Minister knows, it is nearly two years since the DWP announced its review of the special rules for terminal illness and we are still waiting for it to be published. Last July, the Minister said it would be published shortly; today, he says, “in due course”. In the meantime, many have died while waiting for benefits decisions. How long do we have to wait until the Government scrap the six-month rule?

[Justin Tomlinson]

I pay tribute to the hon. Member, who has been brilliant at championing the need to make changes, with which the Department agrees as part of its review to raise awareness of support, improve consistency with other services and, crucially, change that six-month rule. We will be able to make changes very, very soon.

Terminally Ill People: Access to Benefits

Debate between Justin Tomlinson and Jessica Morden

Monday 22nd February 2021 Commons Chamber

[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.

Welfare (Terminal Illness)

Debate between Justin Tomlinson and Jessica Morden

1st reading & 1st reading: House of Commons
Wednesday 22nd July 2020 Commons Chamber

[Jessica Morden (Newport East) (Lab)]

I beg to move,

That leave be given to bring in a Bill to make provision about terminally ill people in the welfare system. The aim of this Bill is to encourage the Government to address the failures of the special rules for terminal illness, which do not fast-track some terminally ill people for benefits, and to make it easier for terminally people to access the benefits that they need. In particular, it addresses the need for urgent action to reform two aspects of the special-rules guidelines that are a source of distress and difficulty for people living with terminal illness. They are the six-month rule which, under section 82 of the Welfare Reform Act 2012, obligates someone to provide medical proof that they have six months or less to live so that they can access benefits quickly and at a higher rate; and the three-year award—a Department for Work and Pensions guideline forces terminally ill people to reapply for benefits if they live longer than three years after the benefit is awarded. As I hope to outline clearly, those two deeply unfair rules are the source of much distress and anguish for individuals and families dealing with the shattering consequences of terminal illnesses such as motor neurone disease, terminal cancers, advanced lung and heart conditions and a range of neurological conditions, which are equally affected.

I want to begin by paying tribute to all the campaigners and charities who have campaigned so tirelessly for a change in legislation, particularly the Motor Neurone Disease Association and Marie Curie, which collaborated with the all-party parliamentary group for terminal illness on its report “Six months to live?”, published last year. I am really grateful that the APPG’s chair, the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), is co-sponsoring my Bill. I would like to thank some of the other charities that have campaigned on this, including the British Lung Foundation, Sue Ryder, Macmillan and St David’s Hospice in Newport.

I also want to pay tribute to my friend Madeleine Moon, the former Member 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. Madeleine cared for her late husband, Steve, who died from motor neurone disease in 2015, and dealt at first hand with 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 this Bill being brought forward today, and I have no doubt that the pressure that Madeleine and other campaigners exerted urged the Government to announce a review in July 2019.

We are now over a year on from the review being launched, and there is still no official news from the Government. However, having spoken to the Secretary of State yesterday, I know that an update is near. I appreciate that there have been some unforeseen disruptions, and the review was paused during the covid-19 pandemic, but in the time that has passed since the review was announced, more than 2,000 people will have died from motor neurone disease alone. Tragically, many of those individuals could have spent the last months of their life struggling to access the benefits that they desperately need.

The special rules for terminal illness claims process is intended to enable people who are terminally ill to access benefits rapidly without going through the standard application process. A claim under the special rules requires a person’s doctor, consultant or specialist nurse to submit a DS1500 form stating that the person is likely to die within six months. That forces people who have unpredictable terminal illnesses 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.

Statistics available for the personal independence payment, which is just one of the benefits impacted by the legislation, illustrate the human cost of the flaw in the system. Between 2013 and 2018, 74,000 PIP claimants died within six months of making their claim. However, around 10% of those people—nearly 8,000—saw their claims disallowed by the Department for Work and Pensions, including more than 1,000 who claimed under the special rules and 3,680 who died within three months of their application being disallowed. Last year alone, 1,820 PIP claimants died within six months of registering a claim that was disallowed at the initial decision.

As things stand, only 50% of the people diagnosed with motor neurone disease claim personal independence payment under special rules because of the six-month rule. It is unfair to ask some people with terminal illnesses to apply through the normal rules because they might have a slightly longer life expectancy than others, or because it is not possible to accurately predict that they are in the last six months of life. That is especially true for inherently unpredictable conditions such as motor neurone, where the rate of disease progression varies from case to case and doctors cannot give a precise prognosis of life expectancy. That is true for other conditions. For example, people with chronic obstructive pulmonary disease can experience sudden and potentially fatal worsening of their condition, which is often brought on by infections. Research from Marie Curie showed that the accuracy of prognostic estimates for terminally ill patients in the UK varies significantly, from 23% to 78%. This failing system must be changed to allow for a sensible degree of flexibility, and that means bringing an end to the six-month rule.

It is not just campaigners who are calling for an end to the rule. Earlier this month, the High Court in Northern Ireland ruled that the six-month limit was discriminatory and “manifestly without reasonable” justification. As the MND Association, Sue Ryder and other charities have repeatedly emphasised, clinical guidance should be the starting point for benefit eligibility criteria for people with a terminal illness. They ask that a medical practitioner or clinical nurse make a clinical judgment that the person has a progressive disease that can reasonably be expected to cause death.

The unpredictability of terminal illnesses is the important reason why the separate but related three-year award needs to go. It is a clear anomaly that terminally ill benefit claimants whose condition has no prospect of improvement are eligible for shorter awards through the special rules than those who claim through the standard process. For example, ESA support group claimants with progressive conditions are entitled to the severe conditions exemption, giving them a lifetime award, while higher-rate PIP claimants can qualify for an ongoing award with a light-touch review at the end of the 10-year point. However, claimants using the special rules process are not able or eligible to receive either of those longer awards and receive a maximum three-year award. Emma Saysell of St David’s hospice in Newport rightly highlights that many people who have reached this point are nothing like they were when the benefit was first awarded and will never be any better than they are at that point. It is a cruel, absurd and disturbing injustice that people who are extremely ill, including some who are paralysed, ventilated or unable to speak, are receiving letters telling them benefits will stop unless they make a new claim.

Last month, at Work and Pensions questions the Minister said that both he and the Secretary of State would make changes to the status quo shortly. I obviously welcome that indication, and I hope “shortly” means very soon indeed—

[The Minister for Disabled People, Health and Work (Justin Tomlinson)]

indicated assent.

[Jessica Morden]

And I think it probably does mean that from the Minister’s indication.

In his comments, the Minister also cited three areas for potential changes: the six-month rule, improving consistency in the system and raising awareness to ensure that people know what is available to them through the special rules. I agree with Macmillan that any reform of the special rules should be accompanied by a renewed programme of engagement with clinicians to ensure they are properly supported to implement them. I also hope we can address the issue of non-medically trained assessors challenging doctors.

The Bill is not a money Bill, but it does call again on the Government to look at changes that can and should be made. In Scotland, which has some devolved powers in this area, the Scottish Parliament passed the Social Security (Scotland) Act in 2018, thus removing the six-month restriction. The changes in Scotland will provide an indefinite award to claimants under the special rules, rather than a maximum of three years.

In 21st century Britain we cannot tolerate a situation where our most vulnerable citizens and their families are forced to spend their final months together wrestling with the complexities of an obstructive benefits system. In a recent MND meeting in Parliament, a daughter quoted her father as saying:

“It was degrading to feel that I had to beg for financial support from a system I had paid into most of my life. I felt abandoned and reduced to a number.”

The word “terminal” should be enough. It should not be about time, as no one can guarantee how long the terminally ill will live, regardless of their prognosis. The criteria for the terminally ill need to change before more people suffer at the hands of this system.

As Madeleine Moon said so powerfully in a speech in this place back in 2018 when she was an MP:

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.]

I ask the Government to look at this matter again: to publish the details of the review and consider making suitable provisions to ensure that our welfare system works for the people it was built to serve in their time of need.

Question put and agreed to.

Ordered,

That Jessica Morden, Peter Aldous, Drew Hendry, Hywel Williams, Dr James Davies, Tonia Antoniazzi, Chris Evans, Carolyn Harris, Judith Cummins, Matt Western, Nick Smith and Mark Tami present the Bill.

Jessica Morden accordingly presented the Bill.

Bill read the First time; to be read a Second time on Friday 27 November, and to be printed (Bill 169).

Oral Answers to Questions

Debate between Justin Tomlinson and Jessica Morden

Monday 7th October 2019 Commons Chamber

[Justin Tomlinson]

The hon. Lady is absolutely right to highlight the need to improve mandatory reconsiderations, which is why we brought forward the pilots in the spring. The pilots are proactively gathering the additional written and oral evidence that was often presented at the end of the independent appeal process, which would sometimes take a year or even longer—that was not acceptable. We have been doing this over the summer, and we are now doing it for all PIP and work capability assessments. I attended a PIP mandatory reconsideration in Cardiff over the summer, and we are seeing some fantastic results because, rightly, we are speaking directly to claimants to ask them why they are challenging a decision. That will make a big difference, and stakeholders warmly welcome it.

[Jessica Morden (Newport East) (Lab)]

3. What assessment her Department has made of the effect of the introduction of universal credit on the financial circumstances of disabled claimants.

[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

18. What assessment her Department has made of the effect of the introduction of universal credit on the financial circumstances of disabled claimants.

[The Minister for Disabled People, Health and Work (Justin Tomlinson)]

Universal credit targets additional support at a wider group than the system it replaces, with a much higher rate for severely disabled people than the employment and support allowance equivalent. Around 1 million disabled households will gain, on average, £100 a month on universal credit compared with legacy benefits.

[Jessica Morden]

It is shameful that it took the Government 15 months and a High Court ruling to sort out payments for those with severe disabilities, but it goes on. Why does a young constituent with Down’s syndrome who is making a new claim have to wait more than three months for a full payment?

[Justin Tomlinson]

We continue to work with stakeholders and claimants to make sure the system is improved and can operate as quickly as possible. I encourage Opposition Members to support the £600 million of additional support for the severe disability premium and not pray against those regulations.

Severe Disability Premium

Debate between Justin Tomlinson and Jessica Morden

Tuesday 7th May 2019 Commons Chamber

[Justin Tomlinson]

I thank the hon. Gentleman, whom I have worked with closely on other issues. To be absolutely clear, in going from the legacy benefit to universal benefit, we have not taken money out but are targeting it at the most vulnerable people. Overall, our spending on those with disabilities and long-term health conditions has increased by £5 billion per year. The key is that all jobcentres will have the support of Citizens Advice to provide additional support for claimants who want it.

[Jessica Morden (Newport East) (Lab)]

A constituent of mine who was forced on to universal credit with no protections lost a considerable amount of money to help with her living costs when her severe disability premium stopped. Now we learn that she may have to wait six months to see any money, even when the regulations are passed. How on earth are disabled people supposed to cope in the meantime?

[Justin Tomlinson]

The priority in our reforms is to make sure that the most vulnerable get the most support within the system. Without knowing all the details of that case, it is difficult to comment, but I am happy to look at the details.