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

Justin Tomlinson Excerpts

2nd reading
Thursday 8th September 2022 Commons Chamber

[Justin Tomlinson (North Swindon) (Con)]

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 Pickett, 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 Pickett 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.

[Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)]

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.

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.

[Justin Tomlinson]

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?

[Drew Hendry]

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.

--- Later in debate ---

[The Minister of State, Department for Work and Pensions (Victoria Prentis)]

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 the Member for North Swindon (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. The hon. Member for Newport East (Jessica Morden) has carried on that work in this place, and it was good to hear from her as well. The hon. Member for Inverness, Nairn, Badenoch and Strathspey (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.

The hon. Member for Reading East (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 the hon. Member for Westminster North (Ms Buck) said, it is sometimes almost impossible to tell.

[Justin Tomlinson]

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.

[Victoria Prentis]

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.