Oral Answers to Questions

Jessica Morden Excerpts

Monday 5th February 2024 Commons Chamber

[Mims Davies]

I thank the hon. Gentleman for his point, which I appreciate as I have been in that situation of caring for two people. The primary purpose of the carer’s allowance is to provide a measure of financial support and recognition for people unable to work full time because of their caring responsibilities. I know there are very strong views on this. I am looking forward to meeting with Carers UK just after recess—I am afraid I cannot do so before, due to a funeral—and hearing the varying views and how we can continue to support our carers, who in every constituency and community do an amazing job.

[Jessica Morden (Newport East) (Lab)]

8. Whether his Department is taking steps to reduce the time taken for personal independence payment mandatory reconsideration decisions to be made.

[The Minister for Disabled People, Health and Work (Mims Davies)]

We have reduced clearance times from the peak of 79 days in 2021 to 36 days in October 2023 by improving processes and increasing decision-making capacity. We will continue to improve efficiency while ensuring effective decision making for all reconsiderations.

[Jessica Morden]

In July last year, a constituent was not able to correctly fill out their PIP review form, which led to their payments being stopped. It took until last Thursday—six months from the mandatory reconsideration going in—for the payments to finally be restored. Because of the delay, my constituent fell into debt and became suicidal. Why are the Government not eliminating the delays that are letting down the most vulnerable constituents?

[Mims Davies]

I am very sorry to hear about the hon. Lady’s constituent. Our aim is always to make the right decision as early as possible in the claim journey, and I would be keen to see the full details of that particular situation. On decisions, it is important to consider the context: 2.9 million initial decisions following an assessment have been made between June 2018 and July 2023; 5% have resulted in a completed tribunal hearing, with 3% overturned. I would be very keen to see what has happened in the case that the hon. Lady mentions.

--- Later in debate ---

[Paul Maynard]

The Department is co-operating with the Parliamentary and Health Service Ombudsman investigation, which is ongoing, and it would not be appropriate to comment on it or the outcome.

[Jessica Morden (Newport East) (Lab)]

T8. My constituent’s universal credit payments have been stopped over Christmas for two years running, because her employer pays her salary early in December. Why will Ministers not do more to ensure that caseworkers know that they can use the discretion that they have, so that my constituents and others like her have financial certainty at what is a very difficult time of year?

[Jo Churchill]

The way that universal credit works means that work coaches can use their flexibility, but if a payment is short one month, the appropriate thing to do is to sort it the next.

Social Security (Special Rules for End of Life) Bill [Lords]

Jessica Morden Excerpts

2nd reading
Thursday 8th September 2022 Commons Chamber

[Jessica Morden (Newport East) (Lab)]

I join in congratulating Ministers and the Secretary of State on their new appointments. I do not think that anybody wants to delay the legislation further for the 30,000 to 60,000 people who will benefit from the change, so I will confine my remarks to Second Reading.

It is a pleasure, as ever, to speak in support of the Bill, which represents an important milestone in the long struggle to improve how our benefits system treats the terminally ill. That we are debating this vital legislation in Government time is not an accident but the result of years of dogged work by organisations such as the Motor Neurone Disease Association and Marie Curie, both of which were of huge support to me when I introduced a ten-minute rule Bill on the subject in 2020. It is also, as others have said, testament to many local volunteers who support those organisations’ work in their communities. On that note, I thank Judith Rice and the very active south-east Wales branch of the MND Association that brought the issue to my attention and has continued to lobby for change.

Like the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), I pay tribute to campaigners across the country including Mark Hughes and Michelle McCluskey. He is quite right that this is their victory, along with those organisations. I also pay tribute to my very good friend Madeleine Moon, the former Member for Bridgend, who I see is in the Gallery. I am glad that she is here to see our proceedings. Her campaigning work on this and her zeal was born out of her own tragic loss. She was particularly dedicated to the cause. The hon. Member for Inverness, Nairn, Badenoch and Strathspey, as chair of the all-party parliamentary group for terminal illness, did a lot of good work in this area by calling out the systematic injustices faced by those living with terminal illness. I thank Mark Jackson from Marie Curie as well as Alison Railton and Lana Ghafoor, both formerly of the MND Association, who were of great help to both the all-party parliamentary group and to me on the ten-minute rule Bill.

I also thank the Government for listening. While I and others will be critical of the delays in getting legislation to the Table over the last two or more years, I am grateful that we are here today and that Ministers have recognised the broad cross-party support for this change. I thank the former Minister, the hon. Member for North Swindon (Justin Tomlinson). There was dogged campaigning on this issue, but he did listen and move things forward. Today, he has had the chance to set out some of the complexities, which will be on the record.

As others have outlined, the Bill will bring an end to the hated six-month rule: a cruel stipulation that forced many of the most vulnerable people in our society to prove that they had six months or less to live to receive benefits under those special rules. The six-month rule was always illogical for those living with complex and unpredictable terminal illnesses such motor neurone disease, given that an exact prognosis of life expectancy within a half-year window is often impossible. It is a disgrace that so many households were pushed through that inhumane bureaucratic hoop at a time of unimaginable pain and worry.

Thankfully, as others have said, the six-month rule has already been removed from the special rules claims for ESA and universal credit, and the Bill will ensure that the same is true for PIP, attendance allowance and DLA. It is crucial that the Bill has a swift passage onto the statute book. For that reason, colleagues in the Lords ensured that it passed through the other place unamended. On behalf of terminally ill people in my constituency and those across the country who simply cannot afford to wait any longer, I support a similar course of action here. The six-month rule may soon be consigned to history, but there is still so much more to do to ensure that terminally ill people are afforded the dignity and respect they deserve from our social security system. I want to speak to some of those connected, ongoing injustices today.

The three-year award duration rule is still in place, forcing terminally ill people to reapply for their benefits if they live for longer than three years. The Motor Neurone Disease Association has pointed to cases where people who outlived their prognosis but were extremely ill—completely paralysed, ventilated or unable to speak—received letters telling them their benefits would stop unless they made a new claim. As with the six-month rule, that is not just cruel but illogical. For example, an applicant can receive a 10-year personal independence payment award with only a “light touch review” after a decade of having a severe or lifelong disability, but if they have a terminal illness they might be made to make a full reapplication after just three years. That makes no sense.

Another issue to look at going forward will be the 12-month rule, which has replaced its six-month predecessor. While it is clear that the DWP wanted to ensure that some timebound definition for the special rules remained in place, it is important that Ministers commit to reviewing the impact of the change to see if it is having the desired effect, or whether significant numbers of terminally ill people are still being disadvantaged. The Government must be diligent in monitoring that and keep all options on the table for the future, including looking at whether a timebound model is more appropriate than a timescale-free approach, such as the one adopted in Scotland. I hope the Minister can speak a bit more to that later on and at the very least commit to a regular evaluation of the new system.

It is important to note that the Bill will not be enough in itself to protect dying people from falling into poverty. As Marie Curie pointed out—this was also raised by the hon. Member for North Ayrshire and Arran (Patricia Gibson) at business questions—the Bill covers access to benefits but not the adequacy of those benefits. Research shows they are all too often inadequate in meeting the impact on finances caused by the additional costs and loss of income that follow a terminal diagnosis. Marie Curie highlighted the cumulative impact of the benefits cap over the last 12 years, which has meant that in real terms working-age benefits are now less generous than they were under the last Labour Government. Benefit rates had fallen behind inflation over the last decade, even before the current cost of living crisis. Marie Curie’s research shows that 90,000 people die in poverty each year in the UK, with those of working age twice as likely to fall into poverty at the end of life. That number is only likely to have gone up over the last eight months, with household bills, the price of food and other essentials going up and benefit rates not rising to meet the shortfall. We face the prospect of more terminally ill people falling into poverty.

I urge the Government to engage with Marie Curie on its “Dying In Poverty” campaign, which had its launch yesterday in Parliament. The campaign’s aim is to ensure that everybody with a terminal illness is able to access the financial support they need to cope with the cost of housing, energy, childcare and disability at the end of their life. That is really important. It includes looking at proposals to ensure that terminally ill people of working age are able to access their state pension early, and, in the immediate short term, at targeted support on soaring energy bills for terminally ill people given their particular vulnerability to fuel poverty.

This afternoon is one of the rare occasions when the whole House is united in our determination to improve how our social security system treats some of the most vulnerable people in our society. That is important, and this legislation is really important. What is doubly critical, however, is that the changes represent a starting point rather than a full stop. We must do more and strengthen our resolve to ensure that none of our constituents or loved ones ever face the indignity of spending their final months worrying about whether they will have enough money to make it through the week. Until the wonderful day that cures are found for the wretched terminal illnesses that blight so many lives, our priority should be to ensure that our welfare system affords every dying person the dignity, decency and respect they deserve. It cuts to the core of what we want our social security system to be and what we want our country to stand for, but I am thankful today for this legislation.

Oral Answers to Questions

Jessica Morden Excerpts

Monday 28th June 2021 Commons Chamber

[Mims Davies]

I remind hon. Members that the benefit cap is set at the equivalent annual salary of £24,000, or £28,000 in London, which importantly provides fairness between taxpayers in employment and those with working-age support. Claimants can approach their local authority for discretionary housing payments if they need additional support to meet rental costs, or indeed for hardship grants. The hon. Lady should look out for the forthcoming in-work progression report, which will look at all these matters. We should take all this in the round.

[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

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.

Welfare (Terminal Illness)

Jessica Morden Excerpts

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).

Universal Credit: Court of Appeal Judgment

Jessica Morden Excerpts

Thursday 25th June 2020 Commons Chamber

[Will Quince]

I thank my hon. Friend for her helpful question. The system is largely automated, and that brings huge benefits—that is why we have been able to deal with those claims—but, inevitably, that also means that issues come up that we need to address. This is one of those issues and, yes, in some cases, they require a manual intervention. My first instinct is to look at whether we can find an automated fix, but we will of course look at manual fixes, if that is necessary. I know that my hon. Friend is on the Select Committee and, if she has any particular ideas in that regard, I am happy to meet her to discuss them.

[Jessica Morden (Newport East) (Lab) [V]]

The Court of Appeal ruling rightly draws attention to one of the problems with the universal credit system, but will the Minister also address why under-25-year-old single parents receive less on universal credit than they would have done under legacy benefits? I have lobbied Ministers with the Newport GoGirls group on that—it is unfair and it needs to change.

[Will Quince]

I did not entirely catch the question, but I think the hon. Lady is referring to the disparity between universal credit and legacy benefits. I would say that this Department acted at incredible pace to operationalise and bring in measures as quickly as possible to help those who have been most financially disadvantaged as a result of covid-19. That is why we did it through the vehicle of universal credit. Legacy benefits will be reviewed and uprated ahead of April 2021 as per usual.

Covid-19: DWP Update

Jessica Morden Excerpts

Monday 4th May 2020 Commons Chamber

[Dr Coffey]

As well as having a relationship with claimants, many work coaches have been deployed into processing claims. Both those things are critical to making sure that the 1.8 million people can get paid on time, and they deserve a tribute for that. As we get over this peak, I think we will see work coaches being able to resume other work with their claimants.

[Jessica Morden (Newport East) (Lab) [V]]

There have been more than 82,000 new claims for universal credit in Wales. That is unprecedented and I echo the thanks to DWP staff, but some people are still struggling to get support with their new claims, including the constituent who could not get through on the phone and had to walk for 45 minutes to get help because she cannot afford internet access. May I urge the Secretary of State to make it much easier to access support with new claims, including by ending the five-week wait?

[Dr Coffey]

We do not intend to end the five-week wait—that is where advances can help. The hon. Lady is right to point out the difficulties people have with telephony. We have turned that system around, so it should be more straightforward now that the DWP calls claimants rather than the other way around.

Oral Answers to Questions

Jessica Morden Excerpts

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

Jessica Morden Excerpts

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.

Oral Answers to Questions

Jessica Morden Excerpts

Monday 7th January 2019 Commons Chamber

[Amber Rudd]

I thank my hon. Friend. There are many contributions on how we can improve universal credit. Some of them carry quite a big price tag, and some have had more success with the Treasury than others. I look forward to further conversations with the Chancellor in due course.

[Jessica Morden (Newport East) (Lab)]

Under tax credits, under-25 lone parents got paid the higher over-25 rate. Under universal credit, they do not. What is the Secretary of State going to do about that? I ask her on behalf of the group of young parents from Newport who are worse off under this system and in hardship.

[Alok Sharma]

I am always happy to meet the hon. Lady to talk about these issues. As she will know, the changes we introduced in the Budget mean that work allowances are going up by £1,000 precisely to support those who need it—individuals with children and, of course, the disabled.