Social Security (Special Rules for End of Life) Bill [HL]
(Limited Text - Ministerial Extracts only)
Read Full debateTuesday 24th May 2022
(2 years, 6 months ago)
Lords ChamberSocial Security (Special Rules for End of Life) Act 2022 Read Hansard Text
This text is a record of ministerial contributions to a debate held as part of the Social Security (Special Rules for End of Life) Act 2022 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
The Parliamentary Under-Secretary of State, Foreign, Commonwealth and Development Office and Department for Work and Pensions (Baroness Stedman-Scott) (Con)
My Lords, hearing that your illness cannot be cured can be a frightening and devastating experience. It can help people at this stage of their life to talk to their GP, who can signpost to local sources of support and highlight financial support to which their patient may be entitled.
As a Government, we want to do all we can to alleviate the pressures facing those nearing the end of their lives and their families. The main way that the Department for Work and Pensions does this is through special benefit rules, sometimes referred to as “the special rules”, which enable people who are nearing the end of their lives to get fast-track access to disability benefits.
Those eligible under these rules get their claims fast-tracked, which means that they do not have to wait as long to start getting payments. In most cases, those claiming will qualify for a higher rate of benefit without having to do a medical assessment. The rules ensure that, at this most difficult time, people can receive the financial support they are entitled to quickly and easily.
In 1990, when these special rules were introduced, many people with an end-of-life diagnosis were unlikely to survive for more than six months. Since then, advances in diagnosis and treatment have meant that people with a terminal illness are living longer. In July 2019, the department launched an in-depth evaluation of how the benefits system supports people nearing the end of their lives. The evaluation’s findings showed consensus across all groups that the current six-month rule should be extended. They also showed strong support for the DWP to adopt a 12-month end-of-life approach that allows people in their final year of life to claim under the special rules, bringing greater consistency with the definition used within the NHS and across government.
In July 2021, the Government announced that we intended to replace the current six-month criteria with a 12-month end-of-life approach. Last month, the DWP made these crucial changes to the eligibility criteria for the special rules in universal credit and employment and support allowance through regulation changes. This was largely welcomed by the public and parliamentarians. As the special rules definition for the personal independence payment, disability living allowance and attendance allowance is set in primary legislation, the Government need primary legislation to change eligibility under the rules from six to 12 months.
The Social Security (Special Rules for End of Life) Bill is a single-issue, two-clause Bill that makes the eligibility changes for these three benefits. The changes will mean that those expected to live for 12 months or less, rather than the current six months, will receive vital support. It will also mean that thousands more people at the end of their lives will be able to access these three benefits earlier than they currently do. There will be a consistent end-of-life definition across health and welfare services that will be more easily understood by clinicians and end-of-life charities.
Once fully rolled out, the changes the Bill introduces will mean the department is spending over £110 million a year more on people nearing the end of their lives. This will potentially mean that, each year, between 30,000 and 60,000 more people may benefit from these changes to the special rules.
A key policy intention of changing the eligibility is alignment with the NHS’s definition of end of life. The NHS considers people to be approaching the end of their lives when they are likely to die within the next 12 months. At this point, clinicians are encouraged to think about the support their patients need, including any financial support.
This alignment of approaches between the DWP and the NHS provides an opportunity for clinicians to have one holistic conversation about a patient’s support needs at the 12-month point, rather than several, thus being more responsive to their patient’s needs. The new 12-month approach will also mean that clinicians are supported with a straightforward and simple definition.
I end by paying tribute to the many people, groups and charities that have supported the Department for Work and Pensions since the then Secretary of State, in 2019, launched an in-depth evaluation of how the benefits system supports people nearing the end of their lives. Their expertise and personal experiences have been crucial to inform and enable the important changes that this Bill brings forward.
I also pay tribute to the healthcare professionals and welfare rights advisers who support patients at the end of their lives and help them to access the benefits to which they are entitled. It is crucial that they understand the changes that the department is making in this area, which is why we have engaged and will continue to engage with key end-of-life charities, hospices and clinical groups, such as the royal colleges.
I am sure that the shared sentiment of this House is that this support is crucial when someone is at the last stage of their life. By expanding eligibility, 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 to them most. I beg to move.
Baroness Stedman-Scott (Con)
My Lords, I thank your Lordships for your contributions to the debate today. I am sure we all agree that this is a matter of huge importance for those at this stage of their life and their loved ones. The Government are committed to improving how the benefits system supports people nearing the end of their lives.
This Bill will ensure that thousands more people at the end of their lives can get fast-tracked access to three disability benefits—the personal independence payment, attendance allowance and disability living allowance—earlier than they currently do. It will change eligibility so that those expected to live for 12 months or less, as opposed to six months, which is the current rule, will receive vital support. The changes ensure a consistent definition of end of life across health and welfare services and introduce easily understood criteria, which will support implementation. The changes will ensure we have a system that works and that gives those affected the support they need when they need it, and that clinicians and charities can engage in with confidence.
I will try to answer some of the many questions raised by noble Lords. The noble Baronesses, Lady Brinton and Lady Sherlock, asked about the response time for fast-tracked claims. PIP end-of-life claims are fast-tracked: it currently takes three working days for new claims and four working days for reassessments. This compares to the current average end-to-end process for new PIP claims of 22 weeks.
The noble Baronesses, Lady Brinton and Lady Sherlock, raised the mobility component of disability living allowance for children under three. Only children over the age of three can claim the higher-rate mobility component of DLA, as all younger children have substantially fewer mobility needs. This group can however still access other forms of support, including the care component of child DLA. There are no current proposals to change the current age restrictions for the mobility component of child disability living allowance. However, the department recognises the difficulties that some families with severely disabled children under the age of three may face, particularly those whose reliance on bulky medical equipment makes transport difficult. As a consequence, the department has been in discussions with the charities Motability and Family Fund to explore options for helping this group of children. A pilot scheme has been developed and is making good progress. Family Fund is selecting children with a profound disability who are under the age of three and are therefore ineligible for DLA but who would benefit from the use of a vehicle provided by Motability Operations. I am sure that the Minister for Disabled People will be very happy to meet the noble Baroness, Lady Brinton, and Together for Short Lives. I will go back to the department and put the wheels in motion for that.
The right reverend Prelate and the noble Baroness, Lady Finlay, raised the difficulty of accurate prognosis, which gets worse the longer it is. The department recognises that determining a prognosis is not an exact science. The definition in legislation is clear that it applies where there is a reasonable expectation that death in consequence of a progressive disease is expected in the next 12 months. We support this in our guidance for clinicians, where we ask whether they would be surprised if their patient were to die in the next 12 months and to consider the expected prognosis. We expect the new 12-month approach to mean that thousands more people will be able to benefit, and we have already heard back from senior clinicians that the 12-month approach helps clinicians feel more confident when determining whether someone meets the special rules in the benefits where it has already been implemented. The department is clear: we are relying on the best judgment of clinicians, there are no repercussions for clinicians whose patients live beyond the time period, and claimants receive three-year awards in recognition of that fact.
The right reverend Prelate raised the issue of ensuring that financial assistance does not come at the expense of better or more widespread palliative care for all. The department has chosen 12 months to align with the NHS definition of end of life and to link up with existing initiatives for clinicians to identify people in their final year of life. We hope that, as part of clinicians’ holistic approach to considering their patients’ needs when they enter the final year of life, the financial support available to a patient is considered alongside their physical, spiritual and other support requirements.
My noble friend Lady Noakes raised the point about the DWP committing to monitoring impact and being prepared to make changes based on evidence and data. I have no doubt that this will happen in the department, but I will go back, raise the specific point and write to my noble friend to clarify.
The noble Baroness, Lady Brinton, wanted to know how doctors, who are key to this, will hear about these changes. We have had extensive engagement with health professionals and others. Let me just read a few, because there are pages of them. The Minister for Disabled People led an update call with policy representatives from Marie Curie, Macmillan and MNDA. We have had royal college round tables with the Royal College of General Practitioners, the Royal College of Physicians and the Royal College of Nursing. We had a workshop with Macmillan benefits advisers. We have had the Westminster Health Forum, the next steps for palliative and end-of-life care bulletin in hospice leaders’ brief and the Association for Palliative Medicine bulletin. I can assure noble Lords that there has been extensive communication. We are developing a bulletin jointly with the Association for Palliative Medicine, a Hospice UK Project ECHO newsletter, learning models for clinicians, royal college features in their communications, a palliative and end-of-life care information session and further workers’ engagement sessions.
The noble Baroness, Lady Finlay, made the important point about claimants being informed when they are coming to the end of their three-year award. A letter is sent ahead of the end of the award inviting them to resubmit information. If they continue to meet the special rules criteria, they will receive another three-year award.
The noble Baroness also asked about doctors signing medical evidence and how we will monitor the evidence received. The medical evidence forms used in support of a special rules claim can be requested only by clinicians and are not publicly available. The DWP’s in-house clinical team also undertakes occasional audits of medical evidence and uses feedback from the process to further improve forms and guidance. Where the DWP is unsure about the information provided or needs to clarify, clinicians from the DWP assessment provider can contact the clinician to ensure that the claim can be processed quickly. She asked what would happen to those claims if identified and what AI programmes are being developed. The DWP is also looking at making process improvements for the special rules end-to-end customer journey. I can ask officials to consider this moving forward.
I take fully the points noble Lords have made about engaging with patients and people using the system. The noble Baroness, Lady Finlay, specifically asked to meet Ministers to discuss the guidance and the forms. I can only say that my officials will be very happy to discuss the existing guidance for commissions; where it can be further improved, we will do so.
The noble Baroness, Lady Finlay, asked what financial support we can give parents when children die. Child DLA stops when the child dies because it is an extra cost benefit for the child and not an income maintenance benefit for the family. She also asked for the latest on the severe disability group; we recognise that people who may not meet the special rules criteria may still have severe and lifelong conditions that will not improve and will always need extra financial support to live independently. That is why we want to test an approach for a new severe disability group, or SDG, so that those people can benefit from a simplified process that does not involve a face-to-face assessment. The department will work closely with the MNDA, Marie Curie and other stakeholders to understand how best to orientate claimants to the new SDG application gateway and design a process that best meets their needs.
The noble Baroness, Lady Finlay, asked what happens if a person outlives their prognosis. Where someone makes a claim under the special rules, they are given a three-year award. This recognises that making a prognosis is not an exact science. Where people live longer than expected, they should continue to receive the support provided to them by the benefits system. She also asked how relatives will be informed about the cut-off point, which I believe I have answered, and what we are doing about people with longer prognoses. The Shaping Future Support: The Health and Disability Green Paper recognises that people who may not meet the special rules criteria may still have severe and lifelong conditions that will not improve and will always need extra financial support to live independently.
My noble friend Lord Balfe and the noble Baroness, Lady Sherlock, raised the issue of secondary legislation. We are currently in primary legislation. There are no plans to change the law again, so this Bill takes the simplest approach to change to 12 months.
My noble friend raised a really important point about whether terminally ill people can still work. Where work is therapeutic and gives them a purpose in life, in very difficult circumstances, the answer is absolutely yes. Those on universal credit can voluntarily take up work where appropriate.
The noble Baroness, Lady Janke, asked about the specialist unit in the DWP. We are actively considering how we can improve the special rules processes; we will keep all noble Lords apprised of that.
The noble Baroness also raised specific guidance and training being provided. The DWP is working closely with clinicians from charities, royal colleges and, in particular, the ambitious partnership for palliative and end-of-life care, as it has done throughout this process, to consider specific communication and training for clinicians about how to support their patients in claiming under the special rules and raise awareness of the eligibility criteria and process. The department worked with senior clinicians to develop a special rules guide for clinicians and, to support them in this process, will continue to monitor the guide’s effectiveness and whether further support is required. My officials would be happy to discuss where the existing guidance for clinicians could be further improved.
The noble Baroness also asked why we are not adopting an open-ended approach with no time limit, based on clinical judgment. The department considered all the feedback it received from the evaluation and decided to adopt an approach that mirrors the one used in the health system; there was significant support from clinicians for this.
The noble Baroness, Lady Sherlock, raised the fact that charities such as the MNDA have called for award lengths to be extended. Although we have already touched on this, a three-year award strikes a balance around recognising that making a prognosis is not an exact science. Where people do live longer, as I have said, support will be provided to them by the benefits system.
The noble Baroness made a point about the PIP assessment times. I can say to her only that we want them to be much shorter. The Minister for Disabled People is working hard to do that and I am sure that, in due course, an all-Peers briefing session in which noble Lords will have a chance to make their points will be available on this issue. The noble Baroness asked for some stats. We will write to her on that point and place a copy in the Library to share it with everyone.
We have only recently got the Marie Curie report. We are seriously considering it but, having listened to everybody, it seems that it is welcome. We will respond in due course.
The noble Baroness, Lady Sherlock, asked how the benefits system links to the NHS. We hope that, as part of clinicians’ holistic approach, financial support is discussed alongside physical, emotional and spiritual needs as a patient enters their final year. The DWP has worked with DHSC and many key stakeholders to create guidance to support clinicians.
The noble Baroness asked what the department’s position is on the recommendation in the Marie Curie report that recommends early access to the state pension. We are still considering the report at this early stage, as I have said. We value Marie Curie as a key stakeholder and welcome our ongoing dialogue. The Government are committed to improving fast-track access to benefits for people nearing the end of their lives; I hope we have demonstrated that. The Bill makes similar changes to DLA, PIP and AA collectively; these changes will enable thousands more people thought to be in the final year of their lives to get fast-track access to the benefits they are entitled to.
The noble Baroness, Lady Sherlock, made a point about a SSAC report in 2020. I must confess, I am struggling—
Baroness Sherlock (Lab)
If I may help, the 2020 SSAC report recommended that the Government review whether children aged under three could be eligible for the higher rate component of DLA.
Baroness Stedman-Scott (Con)
I thank the noble Baroness; that is helpful. Other questions were raised and I will, as always, go back to Hansard and ensure that I answer them in writing and place a copy in the Library.
I again put on record my thanks to the individuals, charities, clinical groups and all the others, including the trade unions, who have supported the Department for Work and Pensions since the then Secretary of State launched an in-depth evaluation of how the benefits system supports people nearing the end of their lives in 2019. We recognise the vital role they play and are committed to continuing our engagement with them as the changes the Bill will make are implemented. I thank all noble Lords again for their contributions today and I hope I have managed to reply to everyone. As always, I am happy to speak to any noble Lords who want to discuss particular issues further before Committee stage; as ever, the door is open. I beg to move.
Social Security (Special Rules for End of Life) Bill [HL]
(Limited Text - Ministerial Extracts only)
Read Full debateMonday 20th June 2022
(2 years, 5 months ago)
Lords ChamberSocial Security (Special Rules for End of Life) Act 2022 Read Hansard Text
This text is a record of ministerial contributions to a debate held as part of the Social Security (Special Rules for End of Life) Act 2022 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
The Parliamentary Under-Secretary of State, Foreign, Commonwealth and Development Office and Department for Work and Pensions (Baroness Stedman-Scott) (Con)
My Lords, I understand that no amendments have been set down to this Bill and that no noble Lord has indicated a wish to move a manuscript amendment or to speak in Committee. Unless, therefore, any noble Lord objects, I beg to move that the order of commitment be discharged.
Social Security (Special Rules for End of Life) Bill [HL]
(Limited Text - Ministerial Extracts only)
Read Full debateWednesday 22nd June 2022
(2 years, 5 months ago)
Lords ChamberSocial Security (Special Rules for End of Life) Act 2022 Read Hansard Text
This text is a record of ministerial contributions to a debate held as part of the Social Security (Special Rules for End of Life) Act 2022 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
Baroness Stedman-Scott (Con)
My Lords, I beg to move that the Bill do now pass.
At Second Reading, all who spoke acknowledged the importance of our social security system providing support as quickly as possible for those who are nearing the end of their lives. This Bill will ensure that more people in their final year of life can access the benefits for which they are eligible in a fast-tracked and simplified way. It is right that the Government are making eligibility changes for this fast-tracked access, so that those expected to live for 12 months or less, rather than the current six months, can benefit. This Bill will mean that thousands more people at the end of their lives will be able to access benefits earlier than they currently do. It will also result in a consistent end-of-life definition being used across health and welfare services in England and Wales, which will be more easily understood by clinicians and end-of-life charities.
I thank all noble Lords for their support in ensuring that this Bill passes through the House quickly. Clearly, we all recognise the significant positive impact this change will have for people who are nearing the end of their lives, and their families. I was also very grateful to noble Lords who engaged with me so constructively while the Bill was passing through this House. Several noble Lords signalled their overall support while also raising important issues, which I will ensure are taken into account as we work to implement the changes that we progress.
I end by paying tribute to all the campaigners and charities that have worked in this area; their support has been crucial in reaching this point and I am sure that all noble Lords join me in recognising the admirable support they provide people nearing the end of their lives.
The Social Security (Special Rules for End of Life) Bill 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 to them the most.
Baroness Sherlock (Lab)
My Lords, I thank the Minister for her remarks and thank all noble Lords who participated in this Bill at the previous stage. It is a short Bill, but one which will have real benefits to people who have been told they have less than 12 months to live. The House can do few things that matter more than to make people’s final months easier than they might otherwise be. The change is long overdue, and we are very pleased to support it. Once again, I commend Marie Curie, MNDA and all the charities that have campaigned to get to this point.
We chose not to table amendments to the Bill, even though I would have liked the opportunity to explore some of the issues about the support available to people nearing the end of their life. However, it is really important to get this onto the statute book as soon as possible because, at the moment, some benefits are available only to those with six months to live and others are for those with 12. That is confusing for clinicians and patients, so we want to support this getting there as fast as possible. I hope that the Minister can assure the House that the Government will reward our restraint by ensuring that the Bill gets through the other place before the Summer Recess.
Since we are not having a Committee or Report stage, I would like to ask two quick questions, of which I have given notice to the Minister. She is aware that various stakeholders, while supporting the Bill, had argued for a more open-ended approach than the one the Government chose to take. This Bill will allow special rules awards to be made for three years, whereas the Scottish Government have taken a different, more open-ended approach. Can the Minister assure the House that the Government intend to evaluate the effectiveness of the approach they have chosen to take in this Bill? Will they take advantage of the opportunity afforded by devolution to compare their approach with that taken by the Scottish Government, and implemented only recently?
In that vein, I ask about the success metrics for this policy change. Will the Minister’s department monitor whether more people are able to fast-track their claims? Will they monitor if fewer people are dying before their claims for benefits under the normal rules have been cleared? That has been an issue; it takes so long to process claims for PIP that people are dying before their claims are processed. Will the Government monitor if claimants find the process easy to manage?
I would like to express my thanks to the Minister and her officials for involving us, and to colleagues for their thoughtful contributions. We send the Bill to the Commons with our full support, and we wish it Godspeed.
Baroness Brinton (LD) [V]
My Lords, my noble friend Lady Janke cannot be in her place today, so I am delighted to thank, on behalf of the Liberal Democrat Benches, the Minister for her remarks and all Peers who have taken part during passage of this Bill. I also want to thank the Minister’s officials, who have been very helpful. It was encouraging that the Bill is supported cross-party. It may be a short Bill, but we believe that its effects will be transformative to those individuals, and their families, who have to face a terminal illness and the financial shocks that go with it as they live the last few months of their lives.
We, too, decided not to table amendments, though we would have liked to, because we felt it was important that this Bill proceeded quickly. Prior to the Second Reading, we had discussions with Marie Curie and other organisations about whether the Government should review the impact of the legislation after a year and make an assessment as to whether the provisions of the Act have had a significant impact on reducing levels of poverty for individuals with a life expectancy of less than 12 months.
We draw the same parallel as the noble Baroness, Lady Sherlock, that in Scotland they deleted any reference to timeframes. I think this would help to give us a comparator once the Bill has been enacted and put into practice in England for a year.
I want to pick up also the point that the noble Baroness made about time for the processing of claims. I made this point at Second Reading, and I hope that for everyone it will be as speedy as possible. I was reassured the Minister said that moving it to 12 months would not slow the process down, but we remain concerned that for some people it is still not as fast as it should be, given the straits that they find themselves in.
At the Second Reading I raised the current anomalies in the rules for the benefits of severely disabled children aged under three, compared to those over three. The Minister kindly agreed to arrange a meeting with the relevant Minister for myself and Together for Short Lives. Unfortunately, I have been offered a policy officer to answer my questions by email, which, while being very kind—and I appreciate the offer—is not quite what the Minister said. As I said at Second Reading, this is a policy decision to treat seriously ill small children differently to their older peers, so please can I repeat my request for a meeting with the relevant Minister?
That aside, from these Benches we welcome this short but vital Bill and look forward in hope that it will ease some of the financial difficulties faced by terminally ill people and their families.
Baroness Stedman-Scott (Con)
I thank the noble Baronesses, Lady Sherlock and Lady Brinton, for their supportive comments, and may I say that we are doing everything we can to get this through the other place in time? Everybody is on red alert to do so.
I would particularly like to address the points made by both noble Baronesses, Lady Sherlock and Lady Brinton. The noble Baroness Sherlock is interested in the department’s approach to evaluating the changes being proposed in this Bill and whether this will also cover a comparison with the approach taken by the Scottish Government. I can confirm that we will continue to monitor our own approach and watch with interest the different approach taken by the Scottish Government as it is fully rolled out.
We will also continue to conduct audits of medical evidence provided to us in support of claims made under the fast-track special rule process and to monitor feedback that claimants provide to the DWP through our existing communication channels. The noble Baroness, Lady Sherlock, also expressed interest in the metrics that would be used to judge the success of the new approach for claims made under the special rules for end of life. The department considers the time taken for these claimants to receive the financial support that they are eligible for as a measure of the policy’s success. I am extremely pleased that the department has a strong record of processing claims made under the special rules in a matter of a few days on average. We also had a constructive relationship with end-of- life charities and will continue to work with them to ensure that the policy intent behind the Bill is being met.
On the noble Baroness’s question about people dying while waiting for the outcome of a claim under normal rules, we want to do all we can to ensure that people get the support they are entitled to while living with a long-term disability or health condition. It is obviously incredibly sad when someone passes away while waiting for the outcome of a PIP claim. The cause of death for PIP claimants is not collated centrally by the department. However, there is no evidence to suggest that someone’s reason for claiming PIP was the cause of their death, and it would be misleading to suggest otherwise.
Finally, the noble Baroness, Lady Sherlock, is interested in whether we will check that claimants find the process easy to manage. I assure all noble Lords that the department is engaging with stakeholders, and clinicians involved in supporting people to claim under the special rules, to ensure that they understand and can navigate the process. We will continue to do so. The department is also looking at making process improvements for the end-to-end customer journey for claims made under the special rules and will use the direct experience of claimants to inform that work as it progresses.
Regarding the point made by the noble Baroness, Lady Brinton, I did agree to a meeting. I am not quite sure what has happened, but I will go back and advise people that we will meet. It will get me into trouble but I will do it. I have held two all-Peers briefings on this Bill. As always, my door is open. Going forward, the Minister for Disabled People, Health and Work, who is sponsoring this Bill in the other place, will be happy to reach out on any outstanding questions that noble Lords may have.
Social Security (Special Rules for End of Life) Bill [Lords]
(Limited Text - Ministerial Extracts only)
Read Full debateThursday 8th September 2022
(2 years, 2 months ago)
Commons ChamberSocial Security (Special Rules for End of Life) Act 2022 Read Hansard Text Watch Debate Amendment Paper: Committee of the whole House Amendments as at 8 September 2022 - (8 Sep 2022)
This text is a record of ministerial contributions to a debate held as part of the Social Security (Special Rules for End of Life) Act 2022 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
The Secretary of State for Work and Pensions (Chloe Smith)
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.
Sir Stephen Timms (East Ham) (Lab)
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?
Chloe Smith
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.
Michael Fabricant (Lichfield) (Con)
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?
Chloe Smith
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.
Alex Cunningham (Stockton North) (Lab)
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.
Chloe Smith
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.
Wendy Chamberlain (North East Fife) (LD)
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?
Chloe Smith
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.
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.
Sir Oliver Heald (North East Hertfordshire) (Con)
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, the hon. Member for Westminster North (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.
Victoria Prentis
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).
Social Security (Special Rules for End of Life) Bill [Lords] (Money)
Queen’s recommendation signified
Motion made, and Question put forthwith (Standing Order No. 52(1)(a)),
That, for the purposes of any Act resulting from the Social Security (Special Rules for End of Life) Bill [Lords], it is expedient to authorise the payment out of money provided by Parliament of any increase attributable to the Act in the sums payable under any other Act out of money so provided.—(Sir David Evennett.)
Question agreed to.
Social Security (Special Rules for End of Life) Bill [Lords]
(Limited Text - Ministerial Extracts only)
Read Full debateThursday 8th September 2022
(2 years, 2 months ago)
Commons ChamberSocial Security (Special Rules for End of Life) Act 2022 Read Hansard Text Watch Debate Amendment Paper: Committee of the whole House Amendments as at 8 September 2022 - (8 Sep 2022)
This text is a record of ministerial contributions to a debate held as part of the Social Security (Special Rules for End of Life) Act 2022 passage through Parliament.
In 1993, the House of Lords Pepper vs. Hart decision provided that statements made by Government Ministers may be taken as illustrative of legislative intent as to the interpretation of law.
This extract highlights statements made by Government Ministers along with contextual remarks by other members. The full debate can be read here
This information is provided by Parallel Parliament and does not comprise part of the offical record
Victoria Prentis
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.
Justin Tomlinson
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?
Victoria Prentis
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.
Matt Rodda
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.”
Victoria Prentis
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.