Skip to main content

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

Volume 719: debated on Thursday 8 September 2022

Proceedings resumed (Order, this day)

Considered in Committee

[Dame Eleanor Laing in the Chair]

Just before we begin proceedings in Committee, may I add to the many statements that have been made this afternoon? The whole House, my constituents in Epping Forest and, indeed, everyone throughout the country is thinking of Her Majesty and the royal family. Our hearts go out to them.

Clause 1

Rules to apply where death expected within 12 months

Question proposed, That the clause stand part of the Bill.

With this it will be convenient to discuss the following:

Government amendment 1.

Clause 2 stand part.

New clause 1—Impact and policy review

“(1) The Secretary of State must conduct a review of the effectiveness of this Act.

(2) Before commencing the review, the Secretary of State must consult the Scottish Ministers, the Welsh Ministers or the Northern Ireland department on the terms of reference for the review and on the appointment of a person to conduct the review.

(3) The review must consider the findings from the evaluation of the special rules for terminal illness process published by the Department for Work and Pensions in July 2021.

(4) The review must in particular take into account the impact of this Act on—

(a) the quality of life and experience of poverty of the recipients of the relevant benefits,

(b) the well-being of carers and dependants of the recipients of the relevant benefits,

(c) the clinical care of the recipients of the relevant benefits, and

(d) the level of take-up of the relevant benefits.

(5) The review may consider and make recommendations for further provision in relation to financial support for people approaching the end of their life (where death can reasonably be expected within the next 12 months), such as bringing forward the date of eligibility for an individual’s state pension to align with the date from when the special rules apply to that individual.

(6) The final report of the review must take account of any contribution made to the review by or on behalf of the Scottish Ministers, the Welsh Ministers or the Northern Ireland department.

(7) The Secretary of State must lay a report of the review carried out under this section before both Houses of Parliament no later than 18 months after the date on which this Act is passed.”

This new clause would require the Government to conduct and lay before Parliament a review of the effectiveness and impact of the Act, with requirements to consult Scottish and Welsh ministers and the Northern Ireland Department.

I understand that the hon. Member for Glasgow North (Patrick Grady) does not intend to press new clause 1, yet it raises the significant issue of renewing the policy, so I will address it.

The Government introduced this Bill following extensive engagement with clinicians, patient groups and others on the support provided to those whose life is coming to an end. As the Committee knows, this engagement began in 2019. The Bill’s change to extend eligibility under the special rules from six months to 12 months was strongly supported during the evaluation. There was significant support from clinicians for a 12-month approach because they feel it is important to align the definition of “end of life” in the benefits system with the definition used in the NHS.

The DWP has engaged extensively with the devolved Administrations on the changes proposed in this Bill. In particular, the Department is in close contact with the Scottish Government to ensure that Scottish people who are nearing the end of their life and looking to access benefits through the special rules are supported by the DWP for reserved benefits, and by the Scottish Government as they continue to roll out their replacement disability benefits. I do not know whether the hon. Member for Glasgow North was here to hear the Secretary of State’s answer on the Department’s engagement with the Scottish Government. As a very new Minister, it is probably better that I defer to her experience of this matter. I very much agree with what she said a little earlier.

The Department also worked closely with the Department for Communities in Northern Ireland during the evaluation to ensure that the experience of people nearing the end of their lives in Northern Ireland was properly captured. The Department for Communities has already implemented the 12-month change, and both Departments continue to work together to ensure that the principle of parity is maintained across both social security systems.

We anticipate that the changes made by this Bill, which will provide thousands more people with vital financial support, will help improve the quality of the very precious time at the end of life. The changes will mean that people in that situation, and by extension their families and carers, can worry a little less about money. In order to help raise awareness of these changes and encourage take-up, we will continue to engage widely. We hope that wider groups—clinical groups and charities—can help us to communicate to those who meet the new definition to make a claim under the special rules. We will monitor the effect of these changes carefully, and we will use our existing network and do some more proactive engagement, too. We will watch with interest as the different approach taken by the Scottish Government is fully rolled out, and I am very committed, as is my Secretary of State, to maintaining strong links with the Scottish Government.

Will the Minister also formally write to her Scottish counterparts and mirror the request, asking that they formally review their efforts and consider the weight of evidence that supports our changes to seek parity?

That sounds like a very sensible suggestion from the former Minister, and if I am charged with this policy area when departmental briefs are fully worked out, I will ensure that I keep up a close dialogue with the Scottish Government on how the two systems are working, both separately and together.

We will also continue to work with the Department of Health and Social Care to assess the impact of these changes on the end of life care provided by the health and social care system as a whole. If at any time a more comprehensive evaluation of the policy is required, we will, of course, commission one, as we did in 2019. The Government want to do all they can to alleviate the pressures on those nearing the end of their lives, and on their families. Our priority is providing people with financial support quickly and compassionately. We are determined to ensure that people have certainty about when they can expect to receive their state pension and that the state pension system is fair to future generations. I hope that this answer has helped to address some of the questions that the hon. Member for Glasgow North may have had, and I understand that he does not intend to press his amendment.

May I support and associate myself with the comments made by the Leader of the Opposition about how we are thinking about the royal family at this difficult time?

I have already outlined our support for this Bill and highlighted several areas in which I believe the House seeks further clarification. I thank the Minister for her responses on some of those, and I look forward to further clarification. As we consider the next stage of the Bill, I would like to share a few case studies from people whose lives have been impacted by the rules, so that we can consider this issue more fully. I also wish to thank Marie Curie for highlighting these cases.

The first case is that of Lorraine Cox from Enniskillen in Northern Ireland. When Lorraine was diagnosed with motor neurone disease in 2018, she applied for personal independence payment to help mitigate the impact the disease was having on her daily life. Sadly, to her shock, her claim was declined. Lorraine took her case to judicial review and it became influential in convincing the Department for Work and Pensions to change the law through this Bill. Sadly, Lorraine passed away in July 2022, while the Bill was still awaiting its passage through the Commons. Lorraine spoke to Marie Curie in 2019 about her experiences, and I will share some of her words with you now.

Lorraine said:

“From the moment I started the application process, I felt like I wasn’t being taken seriously. Just because I don’t look ill—I still wear make-up and dress well every day—that doesn’t mean that I’m less entitled. People don’t realise the impact MND can have on your life. It’s the little everyday things that become a struggle.

I’ve completely lost the feeling in my left hand. I can’t make my own bed, my children help me get dressed, I have a cleaner, I can’t cook the way I used to. My balance is off, and I can now feel my foot starting to go too.”

As part of her PIP application, Lorraine had a face-to-face consultation with a disability assessor. It was after this consultation that she was told her application had been declined. She said:

“I felt so angry when I was assessed as not fitting the criteria. It’s very disheartening and I just don’t understand why it has to be so difficult. Work is very important to me as it gives me some independence and allows me to focus on something else. It’s a bit of escapism from my condition.”

Lorraine went on to say:

“But I want to reduce my hours next year, so I can spend more time with my kids. As I don’t have long, I want to spend quality time making memories. Looking ahead is the hardest part. I’ve started to have nightmares about my kids, a sense of loss or them being taken away from me. They have a wonderful father, but it’s not the same as having a mummy.

I’m a very determined person and I’m not going to give up. It has become a matter of principle, even above the money. I shouldn’t have to spend my time fighting for support. It’s exhausting. Situations like this really make you realise what’s important in life and I’m very lucky that I have a good support network around me.

I felt I had to speak out about my situation as I don’t want others to have to face the same struggles at such a difficult time.”

The second case I would like to share is that of Victor Carver. Victor has terminal cancer and lost his job during the coronavirus pandemic. He says:

“I haven’t got enough money, really, to live. I often borrow from loan sharks, for which you can borrow £20, pay back £40—that sort of thing. I’ve had days where I’ve got no food in my cupboard.

I am broke and I don’t have an overdraft. I don’t have savings anywhere. So, when it’s gone it’s gone.

As soon as I got made redundant, my landlord, who also knew of my circumstances, evicted me. He served a Section 21, a no-fault eviction on me. I wasn’t in arrears. During that time, I only got Housing Allowance. My rent was £1,150, the Local Housing Allowance is £700 or £697, so I was always going to be behind on my rent.”

He says that during that period, he got into difficulty with his rent payments.

Victor goes on:

“My landlord knew I was terminally ill, he knew Covid had hit. Then he found out I was being made redundant, and knew I couldn’t pay my rent, probably. The rest is history. But, because of my circumstances and because of the eviction bans, it took him nearly until September last year to get me out. But by the time I did go out, obviously I was quite a lot behind in arrears.

I ended up homeless, living in an old car. Eventually I got my PIP and my Motability. I get the maximum allowance. And it’s an indefinite payment, because of my illness. So, it can never be challenged. But I had to go to court for this. The DWP took it all the way and I only got awarded it last November.

My PIP was a massively backdated payment. For about £5,000 or something when it came in. But to be honest, I didn’t even notice, it was gone within a week.”

He says that he used it to pay off all the debts he had incurred. He then bought a caravan to live in while he was homeless. He says:

“The hole gets deeper and deeper and deeper. So, you’re borrowing off one loan shark to pay back another. You’re literally robbing Peter to pay Paul.”

I hope you will agree, Madam Deputy Speaker, that those testimonies illustrate the need for this legislation.

As others have said, there is a consensus across the House and I do not intend to do anything to disrupt that with new clause 1. It is probing by nature and the probing has taken place, because the Minister has responded in quite some detail, for which I am grateful, on some of what it was trying to achieve. It is worth spelling that out for the record, even if the exchange is a bit back to front as a result.

We heard on Second Reading that even with the Bill, thousands of households will continue to experience poverty as a result of a terminal illness diagnosis. The Government should therefore be prepared to keep the impact of the changes under review, which is what new clause 1 would require. In doing so, they should look at practice elsewhere, which would obviously include the devolved Administrations. That is why that specific requirement is in the new clause. The Scottish Government have decided to take a different approach—a distinct human rights-based approach—to social security. In this specific context, there is the deliberate lack of a time limit on the definition of terminal illness, and the qualification for payments is determined by a clinician, rather than by Government bureaucracy.

To be crystal clear, both systems have a clinical professional making the decision—there is no difference. Furthermore, there is no additional money in either our system or Scotland’s system. It is just about how quickly a person can access the fast-track service.

That is quite helpful. In the spirit of consensus, I think I would say that this is not job done. That is what I was trying to achieve with my amendment. The passing of the Bill is not where the Government tick a box and everyone pats themselves on the back and goes away. We will have to keep the impact of this under review. Yes, people both north and south of the border will have to look at how things are panning out and come back to it. That is the point that we are trying to make. The amendment provided the opportunity for that point to be made on Second Reading.

Subsections 4 and 5 urge us to consider what wider support might be available, even once people are able to access the additional benefits available through the Bill. That is why Marie Curie and others are calling for the state pension to be paid to anyone who is dying of a terminal illness regardless of their age. Working age social security payments, such as universal credit and employment and support allowance, are just that—they are security payments for when work is not possible or available for whatever reason. A pension is a contributory system. It is a contract. It has been paid into, at least in theory—that might not be how the state pension works in practice, but that is the theory behind it. Many private pensions will pay out, or have the option to be paid out, when a terminal diagnosis has been made, so allowing the same access to the state pension would be a further significant step forward in ensuring that people of working age who are terminally ill can spend their remaining time with some certainty and comfort.

The Government must agree that, in the 21st century in the UK, nobody should have to die in poverty. That is why this is a probing amendment. I am grateful for the pre-emptive response from the Minister and that she has taken this in the spirit in which it has been tabled. I hope that she will confirm that the impact of the Bill will be kept under review, that the Department will work with and learn from the experience of Scotland and elsewhere, and that, when and if more support is required for people, such as access to the state pension, it will be provided.

Question put and agreed to.

Clause 1, accordingly, ordered to stand part of the Bill.

Clause 2

Extent, commencement and short title

Government amendment made: 1, page 2, line 1, leave out subsection (6).

Clause 2, as amended, ordered to stand part of the Bill.

The Deputy Speaker resumed the Chair.

Bill, as amended, reported.

Bill, as amended in the Committee, considered.

Third Reading

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

It is a great pleasure to be speaking on Third Reading. As we have heard this afternoon, the Bill will ensure that more people in their final year of life can access the benefits they need in a fast and simple way. It will result in a consistent end-of-life definition being used across health and welfare services in England and Wales. I thank all those who have prioritised the passage of the Bill through the House. I would also like to thank the House authorities, and the Bill team, which has had to cope with an extremely new Minister—in post this morning—and brief her thoroughly about the Bill. I also wish to thank previous Ministers in my role who have done all they can to take the Bill forward. Above all, I think the whole House would like to thank the charities and campaigners, including Marie Curie, Macmillan, the Motor Neurone Disease Association and others who have worked so hard for this moment.

I thank the Minister for her remarks as well as all the hon. Members who have taken part today, including my hon. Friend the Member for Newport East (Jessica Morden); the former Minister the hon. Member for North Swindon (Justin Tomlinson); the hon. Member for Glasgow North (Patrick Grady); the Chair of the Select Committee and others. I, too, pay tribute to the charities, organisations, trade unions and individuals who have campaigned tirelessly to ensure that these changes are introduced.

As we have already heard, congratulations in particular go to Marie Curie and the MND Association for their Scrap 6 Months campaign. I also pay tribute to all the individuals impacted by this, their families and carers.

This is a short Bill, but it will have a huge impact on many people’s lives at an incredibly stressful time. It is a privilege to play a part in the process of making people’s final months somewhat easier than they might otherwise have been. We chose not to table any amendments to the Bill even though I would have welcomed the opportunity to explore further some of the issues highlighted on Second Reading. It is imperative that we get the Bill on to the statute book as soon as possible so that people can start to benefit from the amended definition of end of life. As things stand, fast-track access to universal credit and ESA is available for those with 12 months to live, while PIP, DLA and attendance allowance are only available for those deemed to have six months to live. That is understandably causing confusion, and everything must be brought into line as quickly as possible.

I shall end by reiterating two very important points. First, will the Minister consider following the Scottish Government in taking a more open-ended approach, rather than insisting that awards made under the special rules can last for only three years? Will she commit to evaluating the relative effectiveness of the two different approaches in the coming months?

Secondly, I return to my point about seeking reassurances about how the Department will ensure that it has the capacity to maintain a truly fast turnaround time for applications made under the special rules. Will it monitor how many people receive their claims before they die? Will it also evaluate how well information is being filtered down to clinicians and others who need it so that they find the process easy to navigate.

Once again, I thank the Minister and colleagues for their thoughtful contributions. The Bill has our full support.

I am also keen for the Bill to make progress as quickly as possible. Our thanks should go to the people who have been campaigning for this change, including the fabulous organisations such as Marie Curie, Macmillan and Citizens Advice; MND and MND Scotland, which have done so much work; and individual campaigners who have told their stories time and again, some at great personal cost.

I praise the probing amendment tabled by my hon. Friend the Member for Glasgow North (Patrick Grady), because it is important that such matters are considered. I hope, from the Minister’s tone today, that she will take away some of the comments that have been made so that lessons can be learned from what has happened to people. Terminally ill people will face increased pressures in the coming months and years, and it is vital that services can be streamlined for them. Ministerial churn should not slow the process in the future and work should be done to ensure that protection.

It has been suggested that the Scottish Government need to do further work. I am certain that the Minister, Ben Macpherson, will be delighted to consider how things can be streamlined further in the interests of fairness and dignity for those people at the heart of the system. I am sure that the Minister will find an open door there.

As I said right at the beginning, this is a welcome step that will help people. It is a victory for the campaigners, so well done to them. They will not stop, and they should not stop, until they get the things they need for the people affected and their families.

To seek to take advantage of the consensus, as part of the review I appeal to the Minister that, as set out in the Green Paper, the next stage is to extend and review the severe conditions criteria, so that those who sadly have terminal degenerative conditions, but would not necessarily be at that 12-month point, find a much simpler and swifter process to enter in to the various elements of support. That would both be good for the claimant and relieve pressure on a system that has a huge amount of demand on it, which would then speed up the process for others so that it could be faster than the current 16 weeks.

Question put and agreed to.

Bill accordingly read the Third time and passed.

House of Commons Commission


That Deidre Brock be appointed to the House of Commons Commission in place of Pete Wishart in pursuance of section 1(2)(d) of the House of Commons (Administration) Act 1978, as amended. —(Mr Peter Bone.)

On a point of order, Madam Deputy Speaker. It is obviously important that hon. Members who have an Adjournment debate, for example, are in the Chamber when they ought to be. However, when business collapses because of the outbreak of consensus that we saw in the House and the determination of hon. Members to ensure that the Social Security (Special Rules for End of Life) Bill [Lords] proceeded as quickly as possible and could get on to the statute book, perhaps it is a little bit surprising. I think we should be grateful to hon. Members that we were able to achieve that consensus. I put on record, as I did not get a chance to, how well the Minister did in responding to my specific amendment, given that she was brand new, and I commend the work of her officials, who have to do that little bit of extra work when amendments come in from Back Benchers. We should be grateful for that consensus, even if it takes a few of us by surprise.

The hon. Gentleman has been most eloquent and helpful to the House in his point of order. It is not really a matter for the Chair, but if I were to express an opinion, it would be that the hon. Member for Liverpool, Riverside (Kim Johnson) owes the hon. Gentleman a double Glenmorangie.