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 the Member for Banbury (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.
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?
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.
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?
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.
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.
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.
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?
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 the Member for Lichfield (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.
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?
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 the hon. Member for Newport East (Jessica Morden), who will also be making a contribution, my hon. Friend the Member for Northampton South (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 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, the hon. Member for North Swindon (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.
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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.
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.
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 the hon. Member for Newport East (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.