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

Baroness Stedman-Scott Excerpts

2nd reading
Tuesday 24th May 2022 Lords Chamber

Moved by

[Baroness Stedman-Scott]

That the Bill be now read a second time.

[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.

--- Later in debate ---

[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.

Bill read a second time and committed to a Grand Committee.