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

– in the House of Commons at 2:29 pm on 8th September 2022.

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[Relevant document: e-petition 613198, Fast-track access to benefits for terminally ill as soon as diagnosed.]

Second Reading

Photo of Chloe Smith Chloe Smith Assistant Whip, The Secretary of State for Work and Pensions 2:40 pm, 8th September 2022

I beg to move, That the Bill be now read a Second time.

It is a pleasure to move the Second Reading of the Bill in this role, and I welcome the new member of my ministerial team, the Minister of State, my hon. Friend Victoria Prentis, who will be at the Dispatch Box for the later stages of this Bill.

For a person to find out that their illness cannot be cured can be a frightening experience. As a Government, we are committed to do all that we can to alleviate the pressures facing those who are nearing the end of their lives and their families. To provide some financial security to those who find themselves in this difficult position, the Department for Work and Pensions has, since the 1990s, provided access to key benefits via what are often referred to as the “special rules”. These are benefit rules that enable people who are nearing the end of their lives to get fast-track access to certain benefits. Historically, people eligible under those rules have not had to wait as long as others to start getting benefit payments. They have not been required to go through medical assessments, and, in most cases, have qualified for higher rates of benefit. In order to access this fast-track route, people had to be assessed by their healthcare professional as having six months or less to live, and this became known as the six-month rule.

For more than 30 years, these special rules have ensured that, at this most difficult time, people have got the financial support to which they are entitled quickly and easily. None the less, since those rules were first introduced there have been significant advances in how the NHS treats and cares for people nearing the end of their lives, meaning that many terminally ill people are now living longer. Given these advances, in July 2019 the Department launched an in-depth evaluation of how the benefit system supports people nearing the end of their lives. As part of that consultation, the Department worked with those people, those who support them and clinicians.

The evaluation’s findings showed that there was consensus across all groups that the Government should extend the current six-month rule. It showed support for the DWP to adopt a 12-month end-of-life approach that would allow people in the final year of their life to claim under the special rules. An added benefit of the 12-month approach was that it would also bring greater consistency with the definition of “end of life” used within the NHS and across Government.

Photo of Stephen Timms Stephen Timms Chair, Work and Pensions Committee, Chair, Work and Pensions Committee

May I be the first to congratulate the right hon. Lady on her appointment and say on behalf of the Work and Pensions Committee how much we are looking forward to working with her and her colleagues in the months ahead?

The Select Committee had previously suggested getting rid of the time period altogether and referring simply to people having a terminal illness, and that approach has now been taken in Scotland. Did the Department consider that in looking at this change, and, if so, what was the reason for rejecting it?

Photo of Chloe Smith Chloe Smith Assistant Whip, The Secretary of State for Work and Pensions

The Chair of the Select Committee makes, as ever, a thoughtful point. I very much look forward to working with him and the Committee. Yes, our evaluation did look at exactly that point. As I was just coming on to argue, our approach brings a greater consistency with the NHS, which considers people to be

“approaching the end of their lives when they are likely to die within the next 12 months.”

That consistency is an important objective. At that 12-month point, clinicians are encouraged to think about the support that their patients need, including any financial support.

A point that I am sure my hon. Friend the Minister of State will draw out at Committee stage is that we also think it is important that clinicians can be supported to make the most consistent and straightforward decisions. Of course, in many cases that is not straightforward, but we want to enable clinicians to have the best chance of making a clear decision in support of their patient. That was the evidence that our evaluation found in favour of the 12-month definition. Indeed, that has been borne out by a great deal of support for what we have since been able to announce, which the right hon. Gentleman will be aware of from the various groups that support those in their last stage of life.

Photo of Michael Fabricant Michael Fabricant Conservative, Lichfield

I am very grateful to my right hon. Friend for presenting this Bill, as will be my constituents in Lichfield. We are blessed with a particularly wonderful hospice, St Giles Hospice in Whittington village. Has the Department spoken to clinicians and organisers at hospices such as our one in Lichfield?

Photo of Chloe Smith Chloe Smith Assistant Whip, The Secretary of State for Work and Pensions

Yes, that is absolutely the case. There have been extensive conversations with clinicians and those in the hospice movement more broadly. I join my hon. Friend in paying tribute to all those who work in hospices such as the one he mentions in Lichfield and the many more across the country. They do such an important job in giving people comfort and support and the right care at the end of their life.

In announcing that the Government intend to move from that six-month criteria to the 12-month end-of-life approach, we have engaged very widely and endeavoured to communicate as clearly as possible so that people know what support is available.

Photo of Alex Cunningham Alex Cunningham Shadow Minister (Justice)

I, too, welcome the Secretary of State to her new position. I welcome the changes that the Government are introducing in this Bill, but as long as one in four terminally ill people of working age spends the last year of their life in poverty, I think that we need to go further. To that end, will the Minister meet me to discuss my Terminal Illness (Support and Rights) Bill, which will require utility companies to provide financial support to customers with a terminal illness and make the employment rights of people with a terminal illness more robust at no cost to the Exchequer. In fact, it may save the Exchequer a few pounds.

Photo of Chloe Smith Chloe Smith Assistant Whip, The Secretary of State for Work and Pensions

I am very pleased that the hon. Gentleman is engaging seriously with this very important matter. I have seen his private Member’s Bill and I know that my colleagues in the Department for Business, Energy and Industrial Strategy will be looking at it very closely in terms of the formal response from the Government. I can say that today’s Bill is all about how to get the best type of financial support to people. I really hope that that means that he will join us in support of the principles and practice of this Bill in addition to his own campaigning work.

In April of this year, changes were made in secondary legislation to the eligibility criteria for the special rules in respect of universal credit and employment and support allowance. These changes have been well received by the key charities that are active in the area as well as by parliamentarians and the public.

The special rules definition, however, for personal independence payments, disability living allowance and attendance allowance is set in primary legislation and therefore we need to be here today dealing with this primary legislation to change the eligibility criteria in those benefits from six to 12 months. This Bill, therefore, is a single issue, two clause Bill that makes those eligibility changes for these three benefits. As I have already explained, the changes put forward in the Bill will mean that, together with that secondary legislation, those expected to live for 12 months or less will be able to access that vital support via the fast-track process rather than waiting until they might meet the current six-month rule.

Photo of Wendy Chamberlain Wendy Chamberlain Liberal Democrat Chief Whip, Liberal Democrat Spokesperson (Work and Pensions)

As the Minister mentioned in her response to the Chair of the Select Committee, in Scotland there have been changes to the process. It has been highlighted to me by Motor Neurone Disease Scotland that part of the challenge now is that the benefits assessment for special rules in Scotland—BASRiS—form and the DS15000 form are required to be completed by clinicians. Can she advise us on what discussions she is having, because it would be very good if we could minimise that complexity?

Photo of Chloe Smith Chloe Smith Assistant Whip, The Secretary of State for Work and Pensions

The hon. Lady is absolutely right. We want to get the greatest amount of support as simply as possible to those who need it the most. To that end, my officials and I have been having extensive conversations with the Scottish Government. We would very much have preferred them to agree to a simpler way to ensure that we get the relevant details and the relevant paperwork. But, of course, this is not fundamentally about paperwork: we need to work together to get that support across both the reserved and the devolved benefits to those who need it most.

We are talking about thousands more people at the end of their lives who will be able to access the three benefits in the Bill and others in secondary legislation. We want a consistent end of life definition across health and welfare services that can be more easily understood by clinicians, end of life charities and patients. The alignment of the definition will allow clinicians in particular to include discussion of welfare benefits in wider conversations about what matters most to their patients, which will, in turn, be more responsive to their needs. We have already touched on how we hope that means that clinicians will be better supported by a more straightforward and simple definition.

Once the Bill is fully rolled out, between 30,000 and 60,000 more people may benefit from the special rules process each year. My Department recognises that it is essential that people are aware of and understand the changes. That is why there has been that extensive engagement that I referred to in response to my hon. Friend Michael Fabricant with key end of life charities, hospices, medical organisations and clinical groups such as the royal colleges.

I pay tribute to the many people who have supported this work since the launch of the evaluation of how the benefits system can better support people nearing the end of their lives. Their expertise and personal experience has been crucial in better informing and enabling the important changes in the Bill. I pay tribute to all those who support patients at the end of their lives, and I am sure we would all agree that it is crucial when someone reaches the final stage of their life that they have that support. By passing the Bill today, we will provide thousands more people with vital financial support so that they can worry a little less about their finances and focus more on sharing the valuable time they have left with the people who matter most to them.

Photo of Matt Rodda Matt Rodda Shadow Minister (Work and Pensions) (Pensions) 2:51 pm, 8th September 2022

I welcome the Secretary of State and the Minister of State to their new posts. I thank the Secretary of State for introducing this short but important Bill.

As we have heard, the intention of the Bill is to amend the definition of “end of life” in existing legislation, extending it from six to 12 months. That will have the knock-on effect of changing eligibility for disability living allowance, personal independence payment and attendance allowance so that individuals who are deemed by a clinician to have 12 months or less to live can have fast-tracked access to those benefits. We are, of course, supportive of those changes and have chosen not to table any amendments to the Bill. However, there are a number of points I would like to raise.

First, it is somewhat disappointing that it has taken the Government so long to bring in the changes. The Department first launched an in-depth evaluation of the special rules for terminal illness as long ago as July 2019. The findings showed clear support for extending the definition of end of life to 12 months. We then had to wait until July 2021 for the Government to announce their plans to bring in the change. In April 2022—a further nine months later—the Department amended the eligibility criteria for universal credit and employment and support allowance through regulation changes. Here we are another five months on and the necessary alterations to primary legislation to do the same for personal independence payment, disability living allowance and attendance allowance are only just making their way through the House. It is a difficult but unavoidable fact that while we have been waiting for this to happen, people who could have benefited from the changes have passed away.

My second observation is that we need reassurance from the Department that fast track really means fast track, and I am grateful to the Minister of State for indicating her support for that approach. In her speech on Second Reading in the other place, the Minister, Baroness Stedman-Scott, estimated that the changes brought forward in the Bill could mean that 30,000 to 60,000 more people may benefit from the special rules. She also stated that it currently takes an average of three working days for new claims and four working days for assessments for PIP under the special rules criteria. If those turnaround times are to be maintained, there will clearly need to be a significant increase in staffing capacity in the Department. What reassurances can the Secretary of State give us today that her Department will have the additional capacity needed?

Thirdly, I know that there are concerns among clinicians and others about the accuracy with which it is possible to determine that an individual is entering the final 12 months of their life. The new rules bring the Department’s definition of “end of life” in line with NHS guidance, which is welcome. However, the NHS itself acknowledges that it is,

“not always possible to predict”, the end of life with complete certainty.

The Motor Neurone Disease Association, which, as we have heard, has done a lot of important work in pushing for this change, makes this case very clearly. Motor neurone disease often progresses very rapidly, with one third of people dying within a year of diagnosis and around half within two years. Yet it is impossible to give an exact prognosis, as the disease is so complex and unpredictable.

Under the current rules, many people living with MND are left to navigate the standard route for claiming benefits, which is entirely inappropriate given their circumstances. Although it is supportive of the changes, the association notes it would have preferred the UK Government to follow the Scottish example and introduce a criterion with no specific time limit, relying instead on the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause their death.

That leads us to a further point: benefits awarded under the special rules are granted for three years. Where an individual outlives their prognosis and the three years expire, they then have to make a new claim despite, in some cases, being completely paralysed, unable to speak or ventilated. That adds an unnecessary extra burden to individuals and their families and carers at an extremely difficult time.

We also need absolute clarity around how clinicians will be informed of the changes and, most importantly, how the Department will ensure that the relevant information is communicated effectively and in a consistent, sensitive and timely fashion. It is one thing to legislate for these changes, but another to ensure that they are filtering through to those who most need to understand them.

I cannot finish without recognising the incredible toll that caring for someone who is sadly at the end of their life has on family members and friends. Some unpaid carers will have given up their own job and become financially dependent on social security payments. It is imperative that they are supported and prepared for the stopping of benefits when the person they are caring for passes away. It is unacceptable that people who have fulfilled such an important role and—we should be honest here—saved the public valuable money should be left both bereaved and, on occasions, destitute.

That is, of course, particularly the case for parents. It is easy to focus on older adults when considering end of life care, but of course that is also the reality of families with terminally ill children. I echo the calls made so eloquently by Baroness Finlay of Llandaff and Baroness Brinton in the other place for a wider review of the benefits available to families facing that awful situation.

For example, the families of seriously ill babies and small children do not currently have access to the mobility component of disability living allowance. Many of those children require round-the-clock care and use ventilators, monitors, oxygen and other vital equipment. Although DLA is available to all families who incur extra costs as a result of meeting the additional care or mobility needs of a child, only those with children over the age of three can receive the higher rate mobility component. I appreciate that that falls outside the scope of the Bill, but it ties in with the need to ensure that individuals and families are given as much support as possible in these most difficult of circumstances.

I finish by reiterating that we are fully supportive of this Bill. I look forward to hearing the valuable contributions that I know others will be keen to make and to this legislation’s continuing to make its way through this House.

Photo of Justin Tomlinson Justin Tomlinson Conservative, North Swindon 2:58 pm, 8th September 2022

As the Minister at the time who triggered these very welcome changes, I am very proud to speak in this debate. I must say that in my 12 years as an MP this is definitely my proudest moment, and this legislation showed me the very best of politics and some of the more frustrating parts of politics—I am certainly free to share some of those behind-the-scenes things.

First, I pay tribute to the people who made this happen and got us here today, starting with many politicians. This was a genuinely cross-party initiative, but the three politicians who stood out the most for me were Jessica Morden, who will also be making a contribution, my hon. Friend Andrew Lewer and Madeleine Moon, a former MP. Throughout the process, they were kind, sincere, very generous and incredibly patient, something I will come on to later.

The leading charities that provided many cross-party MPs with a reminder of the importance of the issue included the MND Association, Parkinson’s UK and Marie Curie. The brains behind this legislation were a combination of my private office, Dr Emily Pikett, who is the DWP’s medical policy adviser, and her team.

We configured a roundtable of the greatest, including those charities that I have mentioned, plus Macmillan, the Multiple System Atrophy Trust, Sue Ryder, the National Bereavement Alliance, Hospice UK, the British Medical Association, the National Nurse Consultant Group, the Association of Palliative Care Social Workers, the British Lung Foundation, the Queen’s Nursing Institute, the Palliative Medicine Association and the Royal College of Physicians, and many, many hundreds more people who work on the frontline in healthcare and palliative care, along with families and patients, contributed. Ultimately, that showed what can be done when Parliament is working at its best, because we have ended up with united support across the board and we are all very pleased, because this will make a genuine difference to people.

I share the shadow Minister’s frustration that it took so long, believe me. I think I went through about five sets of DWP oral questions where the official line was: “We are working at pace across Government.” Believe me, a little bit of my soul disappeared as I saw the regular reminders, predominantly from the hon. Member for Newport East, to explain just how quick “at pace” is, and as I wondered how I could come up with a slightly different variation of those words. In defence of, first of all, the parliamentary process, what would normally happen is that a Secretary of State would ask their Ministers to work out where they would like to prioritise some changes. That would be presented and then as a Department through negotiations with Treasury, particularly where things are going to cost more money, we would work out which ones we could deliver and when. If we have an idea that we want to do something, generally we try to work out how to get from A to B.

At the time, I was working for the wonderful Amber Rudd, who was just a whirlwind of enthusiasm and super sharp. Anyone who had to present their ideas to her really needed to be on top of their brief. She did not suffer fools, and this was one of the ideas that I pitched to her. Then I mentally thought, “Right, over the next three months we’ll start working up some options and work out some costs.” To my horror, the following morning, on Sky News I think it was, she announced that this was then a priority, so very quickly Emily Pikett and her team and I had to be locked away to try and come up with how we would get from A to B.

Initially, the general consensus of stakeholders is what we are now seeing proposed in Scotland. It would have been very tempting to follow that route, and certainly the intentions of the Scottish Government were good, but as they soon discovered, it is not that simple, because we are all terminally ill. Therefore, we cannot possibly give everybody the fast-track access to the benefit, because the system would be overwhelmed. It has to be prioritised for those who are within a certain period of time. What the Scottish Government have discovered is that they now have to create a whole raft of exemptions to the principle of just being terminally ill. They have now created an even more complex process than the original six months rule, which was deemed to be flawed because it was too complex.

Fundamentally, we arrived at this solution because—GPs are the best at summing this up—there is no worse role for a GP than to have to sit one of their patients down, someone who they have been supporting, and say, “We have reached the end of the road. We are now switching our focus to palliative care.” As the current system stood, the GP would have to have that conversation twice, once at roughly the 12-month point and once at the six-month point, to trigger the fast-track process through the DWP for much-needed financial support. The very simple solution was to merge the two conversations together so that it is consistent.

That had the double benefit of reducing the need for the GP to have that dreadful conversation twice, but also, crucially, of raising awareness, because after that first conversation patients and their families understandably have got a million and one other priorities to navigate in their precious final moments. At least now in that conversation, as the palliative care process is being planned, they can be made aware of this additional financial support, and in real terms this will typically reduce the period to access that support from 16 weeks to less than five days.

I understand the shadow Minister’s point about making sure that is resourced. We can be confident of that, because the process is relatively straightforward. In effect, once someone has that note from the GP, the support is automatically triggered, which is why we do not need the 16 weeks. That helps with some of the pressures and will probably save a little bit of time for those who do wait 16 weeks by lifting them out of that unnecessarily long process.

It was a frustration in Parliament that this took so long, and it was one of those where everybody agreed. I remember a Treasury Parliamentary Private Secretary lobbying me very strongly on behalf of one of their constituents, saying, “You’ve got to get this sorted.” I said, “Right, well you can take that back as a note to your own Department then, thank you very much.”

I was absolutely thrilled that, just before my final few days as a Minister, we got the confirmation that we were able to make those immediate changes to the newer benefits. I am incredibly proud, as I said, that the Bill will now sort out the final parts of PIP, DLA and the attendance allowance.

My final plea is to our Scottish friends. I regularly met my Scottish ministerial counterpart, and I put it formally on the record that I absolutely understand that they did it with good intentions. I also understand that, as a matter of principle, they always want to do something different because, in their mind, that strengthens their case for independence. What they have done, however, is create a system that is more complex, because adult disability payments remain under the UK Government’s control, so there is the nightmare scenario of still having the two things. All those stakeholders, particularly Marie Curie, would love to see the Scottish Government adopt our approach in this case, so that there is a consistent approach. Terminal illness is not a time for political divide and debate. That is my plea, so that everyone can benefit.

I thank everybody who made this possible. Everyone who has contributed will have made a genuine difference to people in their hour of need, and we can collectively be very proud.

Photo of Drew Hendry Drew Hendry Shadow SNP Spokesperson (Trade) 3:06 pm, 8th September 2022

I welcome the new Secretary of State and Ministers to the Front Bench. This Bill is a good place to start their new jobs. It is not a massive piece of legislation in its content, but its effect is seriously important for people. In welcoming it, it is important to stress that, but also to give voice to those who have suffered and had frustrations during the time that we have been waiting for this to happen.

This is a small but hard-fought step that will make the last days of life easier for the families and loved ones of those who are diagnosed with a terminal illness. Even though I still believe that the Bill does not go far enough, it is important to welcome that. Thousands of terminally ill people who were previously denied fast-track support will now get the help they need, which is hugely important.

There are also the thousands who did not get much-needed help in the time it has taken Governments to act. I heard the words of the previous Minister, Justin Tomlinson, and I will talk about some of the positive things in a moment, but all the pre-laid excuses about why it has taken so long do not cut ice with the people who have suffered. That should be acknowledged when we are talking about this important issue.

The action needed was simple: scrap the six-month rule and make life a little easier for folk who do not have long to live—or even to get their forms in—so they can receive support and advice. The ask was to get rid of the arbitrary date, which was inhumane; I still think that having an arbitrary date is inhumane, but it is better than what we had before. The moral imperative is, and always was, to just do the right and decent thing for people and give folk who are dying some dignity in whatever time they have left.

That is what the Bill will do in some measure. It will make a difference to those at the end of their lives. It will relieve the financial worries of families who have received the news that no family and no person wants to hear. Moreover, it will ensure that they get fast-track support across all social security payments for the first time.

The Bill has been a long time coming, as I have said. We have many frustrations about how it has been handled, which I will come on to, because, as I said, I think it is important to give voice to them, but I thank the staff at the Department for Work and Pensions who have worked on this policy change. In my capacity as chair of the all-party parliamentary group on terminal illness, I thank outgoing Ministers for the constructive meetings that we have had over the years on this issue.

For me, the story began in 2017 when I heard the experiences of my terminally ill constituents and what they were going through from colleagues in the incredible Macmillan citizens advice bureau in Inverness. Indeed, it resonates with me still today. It is one of the sharpest memories that I have of any meeting I have ever had in my parliamentary career. I sat in a room with these battle-hardened—and, I have to say, battle-weary—professionals trying to help people at the end of their life, and I am not ashamed to say there were tears in that room as I heard their stories.

I could not believe what I was hearing, and I had sat opposite the Government Benches and heard quite a lot up until then. Even then, I thought that surely there must be some kind of mistake here, that it was simply a policy flaw that only allowed people to claim benefits if they had a diagnosis of six months to live, and that just highlighting this would allow us to move on and get this changed for people because, as I have said, and I will say again, it is inhumane for people. But no, this was a culture of hostility—I have to underline this—in the universal credit regime.

Terminally ill people also lost a lot more than just their payments at that time. Countless terminally ill people were forced to go to work coach meetings, and others had their social security payments stopped entirely. Some of these people died from their illness having not had their support payments, or their payments had not even started. Others had actually had their payments stopped, and were told that they no longer qualified for this.

As I say, with the new universal credit regime, terminally ill people also lost their right not to find out about their terminal diagnosis. Previously they could choose not to be told of their diagnosis, and that was possible because their advisers completed the forms on their behalf. With universal credit came a change to the forms, confusion at the DWP, a litany of failures and a “computer says no” attitude to problem solving. The system was pretty miserable for terminally people before the universal credit roll-out—no one has ever accused the DWP of being particularly keen to put dignity at the heart of its operations—but after the roll-out it was beyond a nightmare for people.

Back then, I reached out to Marie Curie and, with Members from across the House, set up the all-party parliamentary group on terminal illness. We launched a truly cross-party effort to have the issues arising from the universal credit roll-out resolved, and to get this Government to scrap the arbitrary six-month rule. We joined forces with the all-party parliamentary group on MND and, working with the MND Association and Marie Curie, we launched the Scrap 6 Months campaign.

I think it is important at this point to pay tribute to the former MP Madeleine Moon, who did so much work. I believe she is in the Gallery, which is fantastic. She deserves a lot of credit and praise for the work she did in pushing this forward, and I was delighted to work hand in hand with her, as I promised I would, to try to get this issue highlighted. I must also pay tribute to Jessica Morden, who has taken up the mantle with Bills of her own. Indeed, I have had my own ten-minute rule Bill on this subject.

We had two active APPGs, a cross-party approach and amazing campaigners who, with so much grace and humanity, laid everything on the table at evidence session after evidence session. An example is Michelle McCluskey, whose mum died of a cancer tumour, weighing just 3 stone after the DWP stopped her £117 a week benefit. She relayed the pain and suffering this caused her over and over again to the media and in evidence sessions, trying desperately to ensure that nobody else had to endure the same. She, like other amazing campaigners, such as Mark Hughes, who himself has a terminal illness, and others who have campaigned with terminal illnesses, achieved this change today. This change is their victory—this is their moment—and I want to put on record my thanks to each and every one of them, and to the teams at Marie Curie, the MND Association and MND Scotland for all they did to lobby this Government over the past five years to just simply do the right thing.

Back in 2017, when we started to form the campaign, we must have been much less jaded as we seriously thought, given how horrendous the situation was and how easy it was to fix, that this Government would act, but it is now 2022 and, thankfully, the legislation is now going through its remaining stages today. Although I am happy—I am happy this is happening, believe me, because as a result, thousands of people will get the fast-access support they need—and I welcome the Bill, I must highlight the human cost of this Government’s inaction. Year after year we produced reports, held evidence sessions, met Minister after Minister, and highlighted real and devastating cases. We were promised that action would come. I have heard stories of the internal workings, but people who are dying do not really want to hear those. They want action to help them and their families at that time.

We held evidence sessions, and every time we were promised that action would come. Then there was a reshuffle and a new Minister, more promises of action, another new Minister and yet more promises of action, then yet another Minister and so forth. All the while, the Government were telling us that the review was imminent, and all that time we were losing campaigners to their terminal illnesses as each new Minister came and went. That time cost many more lives than we ever foresaw. Back in early 2021, Marie Curie estimated that until that point around 6,000 people had died waiting for this change.

Let us remember what we are talking about. This is not a budgetary change or a big costly exercise; this is about faster access to help for people who are dying from a terminal illness. Five years from when I first raised the issue with the then Secretary of State, five years of campaigning by so many incredible people, and we are here—it is welcome. However, this is a story of a failing Government who need to understand the issues around this. Back when I first raised the issue with a UK Minister, I also raised it with the then Scottish Minister responsible for the roll-out of Scotland’s new social security operation, Jeane Freeman MSP. Her response was almost immediate:

“Thank you for highlighting this issue and we will find a way to ensure this never happens with the new Scottish Social Security Department.”

True to her word, for personal independence payments the Scottish Government have taken an open-ended approach to defining terminal illness for financial support. I have yet to have one complaint in my inbox that people are not getting that support, so I do not see the difficulties that have been highlighted. The Scottish Government chose to start from a place of putting those people and their needs first, and to find a way to make the system work while putting dignity and respect at the heart of the process. That is in sharp contrast to this Parliament, where the internal struggles of the Tory party have seen us reach our fifth Secretary of State for the Department for Work and Pensions in five years, and a hostile approach that is not limited to the Home Office but reverberates across Departments.

Photo of Justin Tomlinson Justin Tomlinson Conservative, North Swindon

I absolutely understand the good intentions behind what the hon. Gentleman sets out, but the fundamental flaw is that it relies on people who are terminally ill knowing about the support, and how to navigate what is now a complex situation in Scotland. Under our rules, the 12-month rule, support can be automatically highlighted by GPs at the same time as palliative care. Not only is that a better system, but people who would otherwise unknowingly miss that support will get it. Will he lobby the Scottish Government to listen to the stakeholders he has praised and mirror what we are doing?

Photo of Drew Hendry Drew Hendry Shadow SNP Spokesperson (Trade)

I thank the former Minister for his intervention, and I would say two things. First, the principle in Scotland was to ensure that it was not a DWP operative or contracted-out person who made the decision, but clinicians and health professionals. This is not a particularly party political issue, but I said that I would give a voice to the frustrations of people of all political persuasion, and none, who have struggled and suffered through this process, and that is what I am doing. I will always work to try to get a problem ironed out, should a problem exist, but I am not faced with the same content in my mailbag that I had in previous years due to difficulties with the DWP.

Like other Departments, the DWP is barely functioning at the moment, so there is real work for the new Secretary of State and Minister to get into. Staff from offices across the Chamber cannot get answers for our constituents, and the situation is even worse for colleagues in local citizens advice bureaux. People living with terminal illness face housing and fuel poverty on top of the rising costs that come with having to live with a chronic health condition: they have to stay in and heat their houses because they have to be as well as possible in those houses. People living with terminal illness face many ongoing issues, and they, like millions of households across the nations of the UK, are being failed if that is not heard. The Government must listen to those demands to treat dying people with dignity and respect and ensure that more people do not die stressful deaths in poverty due to inaction.

Photo of Jessica Morden Jessica Morden Chair, Statutory Instruments (Joint Committee), Chair, Statutory Instruments (Select Committee), Chair, Statutory Instruments (Joint Committee), Chair, Statutory Instruments (Select Committee), Shadow Vice Chamberlain of HM Household (Whip), Shadow Deputy Leader of the House of Commons 3:20 pm, 8th September 2022

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 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, 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 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.

Photo of Patrick Grady Patrick Grady Scottish National Party, Glasgow North 3:29 pm, 8th September 2022

Like other Members, I am keeping the Queen and her family in my thoughts and prayers at this time.

It is always refreshing when consensus breaks out in the House, and that has, more or less, been demonstrated this afternoon. I pay tribute to the Members who have spoken who have campaigned on this issue for considerably longer than I have—for many years. We will almost certainly all have constituents who stand to benefit almost immediately once the Bill is implemented. Indeed, many of us will have friends and family, in our constituencies or elsewhere, who will feel the positive impact.

As a number of Members have noted, the direct application of the Bill in Scotland will be partial, because the disability living allowance and the personal independence payment have been replaced by the child and adult disability payment schemes respectively. In due course, the attendance allowance will be replaced by the pension age disability payment.

The Scottish Government have taken a distinct approach by placing dignity, fairness and respect at the heart of social security, which they recognise as a human right. They think that it is not about the beneficence of the state but is something that people are inherently entitled to, so that they can live an adequate and humane life. Therefore, when these payments are made available to people in Scotland who have received a diagnosis of a terminal illness, there will not be a specific time limit. Social security becomes available if a clinician determines that their patient has

“a progressive disease that can reasonably be expected to cause the individual’s death.”

The UK Government will at some point have to review the implementation and effectiveness of the Bill after it has been enacted—I hope to have a bit more to say about that in Committee—and when that time comes, they should look carefully at the experience and approach being taken in Scotland and at whether it is working.

The overall costs of the Bill to Government—whether in Scotland or the UK—are not exorbitant, but the difference that will be made to the lives of those in receipt of benefit will be significant. The 12-month limit, instead of a six-month limit, will remove uncertainty in the most difficult of circumstances and provide quicker and easier access to support at a time when it is needed most. That will be true across the spectrum, no matter the age of the individual or the shape of the household. It does seem, however, that the changes will be particularly welcomed by people and families of working age, who often feel the impact of a terminal diagnosis particularly hard.

As others have said, Marie Curie is one of a number of organisations who have campaigned for many years for the Bill to be introduced. All those groups should be congratulated. Marie Curie research shows that 90,000 people die in poverty every year in the UK. One in four terminally ill people of working age spend the last year of their lives in poverty, so the quicker and easier that it is to access these benefits, and the earlier that that can be done in the diagnostic and clinical journey, the better. With a terminal diagnosis, time becomes even more precious, and that time should not be frittered away because of money worries or state-imposed bureaucracy.

The Marie Curie “Dying in poverty” report contains some powerful and moving testimony from people and families around the UK who are struggling to make ends meet while dealing with a terminal illness. One of those who shared their experiences is Melanie, who, as well as being a constituent of my hon. Friend Drew Hendry, is a close personal friend of mine. I have known her husband, Tom, since we were the same age as their wee boy is today—he is also my godson—and I had the immense privilege of being the best man at their wedding earlier this year.

Mel spoke to the BBC about how radically their lives have changed since she was diagnosed with stage 3 cancer last year. They are experiencing what many families and households experience when one of their number becomes terminally ill. The chances are that the person with the illness stops working and at some point begins to lose contractual or statutory entitlements to sick pay. However, with reduced mobility and greater support needs, their partner finds that they, too, need time off work and perhaps a reduction in hours, which, in turn, means a further reduction of income. That is at a point when costs and outgoings begin to increase—for adaptations to the house, more specialised food or drink and more frequent trips to the hospital—and that is exactly what has happened to Mel, Tom and their family.

When Mel gave her testimony to Marie Curie and the BBC, she said it was not because they were special—although they are very, very special indeed to me—but because what they are experiencing is typical. Cancer support forums and other terminal illness support groups are full of such stories, and we have heard others from across the House. For thousands of families like them across the country, the situation this winter is not going to get any easier. Skyrocketing energy prices will lead to exceptionally difficult choices, even with the support packages announced today. “Heat or eat” is a phrase that we hear so many times in this Chamber, but that is the almost impossible choice facing people with a terminal illness. Warmth and good nutrition are essential if medical treatments are to have any chance of prolonging or improving quality of life and if palliative care and pain medication are to have any kind of impact. It is not just about the costs of food and fuel; energy-efficiency measures such as a new boiler, a window or wall insulation are rarely completely cost-free. That means more up-front capital expense at a time when savings are dwindling, if they still exist.

The last time Mel and I spoke about the Bill, she made an important point. The changes that we are debating today and the further changes that Marie Curie and others are calling for are not specifically about tackling the wider cost of living crisis that is affecting the country today. Even if inflation were low and energy prices were stable, research shows that a terminal diagnosis could cost a household as much as £12,000 to £16,000 per year. People need support. People are entitled to support to help them to get through these most difficult of times, focus on their life, their family and their loved ones, make memories and savour the moments while they can. They should not have to worry about whether they can keep their houses warm or fill up the tank to drive to hospital for treatment.

Urgent action must be taken to support everyone who is feeling the impact of the cost of living crisis, including those who are diagnosed with a terminal illness, but that needs to happen above and beyond the provisions of the Bill. For working-age households in particular, a terminal diagnosis often creates its own cost of living crisis or, worse, cost of dying crisis. Basic human dignity should mean that those who can no longer be an active part of the workforce and who are faced with the end of their life are adequately supported to spend what remains of their time as comfortably as they can.

The Marie Curie report makes some recommendations for further steps, such as bringing forward eligibility for the state pension. We might be able to discuss that point in a little more detail in Committee, but for now I think we need to welcome the consensus for the Bill’s Second Reading. For some families, as my hon. Friend the Member for Inverness, Nairn, Badenoch and Strathspey said, it has come too late. It has taken years of campaigning to bring about a change that will cost very little to the Government but that might make all the difference to those who will benefit.

Passing the Bill today will not be job done. Its provisions must be kept under review and benchmarked against better or best practice in Scotland or elsewhere. If individuals and families, like my friends, who want to make the most of their time together after a terminal diagnosis think that further, different or more support is needed, they should be listened to and it should be provided.

Photo of Karen Buck Karen Buck Shadow Minister (Work and Pensions) 3:37 pm, 8th September 2022

May I welcome the new Secretary of State, who is not in her place, and the new Minister of State? This is a short but important and welcome Bill that has rightly been approached in a spirit of consensus and in a largely non-partisan manner. Hon. Members on both sides of the House and former Members have campaigned hard over many years to get us to this point; it may feel inevitable now that we have reached it, but I know that it does not feel inevitable while people are campaigning for it. The former Minister, Justin Tomlinson, played his part as well. All credit must be paid to everybody who has brought us to this point, including the charities and campaigning organisations that have done so much work and have brought the evidence to the Government for making the change.

All Members who have debated the Bill this afternoon or in the other House agree that the experience for people with a terminal illness is almost inevitably one of financial worry as a result of lost earnings and additional costs. At the very time when they need the least stress in their life, financial worries all too frequently add not just to their own stress but to that of their loved ones and those who care for them. The last thing that people with a serious illness or a terminal condition need is to go through the worry of making benefit applications and amassing evidence. The fewer cliff edges in their path, the better. We need to do everything we can to reduce the stresses for people who are already living with unimaginable stress. The Bill is welcome because it will do that. It will relieve stress for many, many people for a considerable period.

As my hon. Friend Matt Rodda made clear in opening this short debate, it is a shame that it has taken us three years to proceed from the start of the evaluation of the special rules for terminal illness to where we are now, but we are none the less relieved that we are passing legislation, and doing so with everyone’s support. We want these changes to proceed with all speed. However, there are one or two areas in which we have sought additional assurances; no doubt they will be referred to in Committee as well.

First, can we be assured that as we pass from the general into the specific—the opening up of entitlement to potentially tens of thousands of individuals—no further barriers will be put in the way of claimants, and the system will have the capacity to process applications swiftly and compassionately? Perhaps during the Bill’s further stages the Minister will be able to say a bit little more about what capacity can be guaranteed in the Department for Work and Pensions to ensure that that will be possible.

Secondly, we have heard a little about the need for us to monitor the potential for different approaches as the Bill proceeds. As we heard from my hon. Friend Jessica Morden, there will still be a great deal to do once the six-month rule has been consigned to history. It is important for us at least to keep an open mind as we monitor the implications of these changes, in view of the inevitable trade-offs. We must ensure that a time limit which has the benefit of administrative simplicity does not exclude the exceptional needs of people with an illness, because health conditions are so imprecise and the evaluation of the medical profession is inevitably precise. The circumstances of those whose condition takes them just over a period of qualification should be considered flexibly and compassionately. A more open-ended approach may be more complex, but it can ensure that individuals are treated in a more dignified and compassionate manner.

Obviously we have no intention of delaying the Bill’s progress. However, we seek assurances from the Minister that these issues will be considered further, that the impact will be closely monitored, and that attention will be paid to the merits of an alternative approach. That said, I hope that we can now move very quickly to complete the passage of the Bill.

Photo of Victoria Prentis Victoria Prentis The Minister of State, Department for Work and Pensions 3:42 pm, 8th September 2022

The thoughts and prayers of the House and, indeed, the whole nation are obviously with those in Balmoral at the moment.

It is nevertheless a great honour to debate this extremely important—if quite short—Bill, and to hear, from all parts of the Chamber, very personal stories and a passionate desire for us to do what we can to make the welfare system better for those who are nearing the end of their lives. Like so many others, I myself have buried both my child and my mother, and I strongly believe that we must do everything we can to help people to achieve the best possible death. This Bill is part of that passion.

I want to pay tribute to some of the people who share the passion. We have heard from some of them this afternoon, and we have heard from others who are no longer in this place. I should include in that list the former Member of Parliament for Hastings and Rye, who felt very firmly that she wanted to initiate and engage with such a Bill. We heard a passionate speech from my predecessor, my hon. Friend Justin Tomlinson. He has done a marvellous job for years, and indeed this afternoon, when he responded to many of the points to which I would otherwise have had to respond, as the Minister who has been in place for only hours, not days.

We have also heard about the former Member of Parliament for Bridgend, and it is such a pleasure to see her in the Public Gallery this afternoon to witness the conclusion of many years of work and passion. Jessica Morden has carried on that work in this place, and it was good to hear from her as well. Drew Hendry, the Scottish National party spokesman and the chair of the all-party parliamentary group on terminal illness, has also worked very hard on issues relating to end-of-life care. It is good to feel consensus this afternoon, and I am really pleased to bring the Bill to this stage, although I feel slightly embarrassed, as others have been working in the area for so long.

I will touch very briefly on the questions that were asked in the course of this very short debate. They relate partly to time. It is important to get this right, and we had to consult. I say this as a new Minister: it is really important that we listen to both patients and clinicians. That always takes time. We have had a global pandemic in that time, but I agree that it is of course important for those who are dying that we roll out the rest of the policy as soon as possible. We are very much hoping that measures can be put in place and operational by April of next year.

Matt Rodda was kind enough to mention turnaround times. As a very new member of the Department, I am proud of the turnaround times. The fast-track approach means that there is a three-day average turnaround time in the special department that deals with the special rules. I think that is fantastic, and should reassure those across the House who are concerned about whether the system will have the capacity for these very special claims for people who are nearing the end of their lives. If I may use the words of the hon. Member for Inverness, Nairn, Badenoch and Strathspey and change them a bit, I feel that there is an “computer says yes” attitude in that section of the Department. That is right and proper, and I will do all I can to ensure that that is maintained, and, yes, we will monitor the progress of the policy extremely carefully and it is right that we do that.

It is important that we listen to clinicians on the time limit. This is a difficult area. It is difficult for clinicians to have these conversations with patients and families, and it is difficult for them to know everything about the progress of a disease. As Ms Buck said, it is sometimes almost impossible to tell.

Photo of Justin Tomlinson Justin Tomlinson Conservative, North Swindon

On the specific point about clinicians, it is also about striking a balance. Clinicians do not want to be an extension of the DWP or the social security system. It was therefore also important to piggyback on existing work rather than creating arbitrary work. Clinicians have enough pressures, and they made that crystal clear in the engagement we had with them.

Photo of Victoria Prentis Victoria Prentis The Minister of State, Department for Work and Pensions

My hon. Friend puts it much better than I can, and I thank him warmly for his engagement. The consultation was extensive and almost 1,000 clinicians were able to share their views. I would also like to reassure the House that we have a robust system in place to keep checking in to make sure that the system works in the best way it possibly can.

Photo of Oliver Heald Oliver Heald Conservative, North East Hertfordshire

I do not know whether my hon. Friend would like to say a further word about the attitude of the DWP staff. I served on the Work and Pensions Committee for many years, as did the Opposition spokesman, Ms Buck. I think the staff want to get the money out of the door, and if there is clarity in the rules that helps. I welcome the Bill, but I wanted to make that point about the staff, who are, I think, good-hearted and who want to do the job well.

Photo of Victoria Prentis Victoria Prentis The Minister of State, Department for Work and Pensions

My right hon. and learned Friend makes an excellent point. In my interactions with DWP staff as a constituency MP, I have been blown away by their determination to help those we serve. I am sure that that accords with his experience.

In conclusion, the Bill will ensure that thousands more people who are at the end of their lives can get faster access to three disability benefits. It will change eligibility so that those expected to live for 12 months or less will be able to access support at an earlier stage. The changes will ensure a consistent end-of-life definition across health and welfare services and will introduce—this is very important, as clinicians begged for it—easily understood criteria that should lead to really effective implementation and wide take-up. The Government are committed to improving the benefit system so that people nearing the end of their lives will have a system that works, one that gives those who are affected the support they need when they need it and one that clinicians, charities and families can engage in with confidence.

I put on record my thanks to the individuals, charities, clinical groups and others who have supported the Department since the evaluation of how the benefits system supports people was launched in 2019, and I recognise the valuable work that has been done. The Department is absolutely committed to continuing to engage with them as the changes in this Bill are rolled out and implemented. This is only a small Bill, but it is one that will provide thousands more people with the valuable support they and their families need at what is a very difficult time, and I commend it to the House.

Question put and agreed to.

Bill accordingly read a Second time.

Further proceedings on the Bill stood postponed (Order, this day).