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.
My Lords, this short Bill is very welcome. I propose to make a contribution only to ask a couple of questions about it and to raise one other issue.
From working with people with serious life-limiting illnesses and the charities that support them over recent years, I have heard them express real frustration with the inability to access benefits and support that they are entitled to as they face the end of their days. I look forward to the contribution from the noble Baroness, Lady Finlay, because I know that other doctors have said how difficult it is to estimate the six-month period correctly, and that by that stage the individuals have often had to give up work, frequently at short notice. Their family members have found that their lives are impacted too, because many now act as carers for their loved one, which also impacts on their own jobs and any other roles they may have.
It is reassuring that the period for special rules will now be extended to 12 months, and I hope that doctors will find estimating that period easier. I ask the Minister a practical question: how will doctors in both primary and secondary care, who are obviously key to this, hear about these changes?
I will also ask the Minister about how the special rules process is managed. The Government’s information page on these rules does not explain for the ordinary member of the public how applications are processed and how long they take under the current rules. I am grateful to the Minister for her explanation in her introductory speech that these applications are expedited, but I have also picked up that there is some concern that extending it to a 12-month period might slow down the decision-making time in the DWP. Can the Minister assure your Lordships’ House that this will not be the case? What will the target be for approval of these special end-of-life benefits applications, once the doctor’s letter and forms have been received?
I also want to look at the special rules for end of life as they affect children and young people. Far too often we associate the end of life only with adults. I am grateful to Together for Short Lives for its briefing and for the honour of supporting and working with it over recent years. Children’s palliative care, or the slightly different needs of these families facing the end of life of their child, is too often forgotten. Many seriously ill children and young people who need palliative care also need access to disability living allowance, or PIP for those aged over 16.
It is well evidenced that the families of those facing the end of their lives have increased costs compared with other families. Nearly two-thirds of families with severely disabled children say that they have had to give up work to look after their child, and on average they have lost £21,270 from their annual family income. I hope that the new 12-month special rules mean that these families with a child who has a very life-limiting illness will get access to DLA and to PIP.
I also hope that there might be the possibility of giving seriously ill babies and small children access to the DLA mobility component. It appears that there is an anomaly for those aged under three. The children we are talking about often have to use ventilators and other heavy kit, often with the need for other monitors, oxygen supply, spare tubes and tracheotomy emergency bag. These parents rarely get through a night without alarms going off.
My family had to live this life for three years. One of my twin granddaughters had a ventilator and heart monitor until she was three. Only family members trained by the wonderful Evelina London Children’s Hospital were allowed to babysit or stay overnight with her. I have to tell your Lordships, the alarms went off most nights. It was an exhausting privilege to be able to help, but I also know from my son and daughter-in-law that getting anywhere with that equipment was close to impossible, let alone going on holiday. Our granddaughter was fortunate in that she grew out of her problems, but sadly many children do not, and parents know that they face a very different type of parenthood that is invisible to far too many people.
The problem is that, although DLA is available to all families who incur extra costs as a result of meeting the additional care or mobility needs of a disabled child, only children over the age of three can receive the higher-rate mobility component of DLA. The Social Security Advisory Committee published a report in November 2020 and recommended that the DWP consider extending the higher-rate DLA mobility component to these children under the age of three.
These families are also grateful for the Family Fund mobility support scheme but the criteria for children under three is different from those over three, in that one parent must be able to drive. The DLA mobility component award to children over the age of three does not depend on a family’s ability to drive. These families often have to rely on taxis; they cannot take these children on buses or trains, partly because of the kit and partly because the children are very vulnerable.
I appreciate that the Minister may say that this is out of scope of the Bill, but I would be grateful if she would agree to a meeting with myself and Together for Short Lives to see if there can be a change for this very small group of disabled and severely ill children aged under three.
Returning to the Bill, I look forward to hearing contributions from other Members of your Lordships’ House, and to the Minister’s response.
My Lords, from these Benches I am glad to be able to support the Bill, which is welcomed by so many charities and which will bring relief to so many anxious families. It seems to have four significant strengths, the first being clarity. The rules surrounding benefits and healthcare at the end of life are confusing and not always easy to navigate. The Bill goes some way towards making things simpler and more straightforward both for people who are terminally ill and for their families, and that has to be a good thing.
The second strength is consistency. As we have heard, the Bill will put disability living allowance, personal independence payment and attendance allowance on the same footing as universal credit and employment and support allowance. However, it will also provide consistency with the definition of “end of life” currently used by the NHS, as well as providing consistency with other parts of the United Kingdom.
The third strength of the Bill is its concern for the whole person. It takes seriously the fact that a diagnosis of terminal illness brings with it a wide range of emotional, practical and spiritual worries, along with the physical symptoms that may or may not already be evident. By cutting down on bureaucracy and by ensuring a measure of financial assistance, the special rules will at least alleviate some of the distress that people currently experience.
Fourthly, I believe that the provisions of the Bill command fairly widespread cross-party support and I do not imagine that they will be greatly opposed.
However, having made clear my support for the Bill, none the less I will mention two little caveats which need to be borne in mind as we move forward. One has to do with the difficulty of making an accurate prognosis. As Sarah Newton, then the Minister for Disabled People, Work and Health, pointed out in 2018, the longer the prognosis, the less likely it is to be accurate. Making the period longer than six months would therefore make the diagnosis and potentially the conversation between doctor and patient that much more difficult rather than, as we were just hearing, easier. This has obvious implications both for the patient and for the doctor, and for the benefits paid out.
The second caveat concerns palliative care, which is frequently raised here in your Lordships’ House—it was mentioned just now by the noble Baroness, Lady Brinton, with particular reference to children. While I welcome the financial provision that the Bill makes more possible, I hope that the Minister may be able to reassure us that it will not be at the expense of better and more widespread palliative care for all those nearing the end of their lives. This must be both/and, not either/or, as we seek to ensure the best possible treatment— physical, emotional and spiritual—for all those who are terminally ill.
My Lords, I wholeheartedly support this short but very important Bill; we should get it on to the statute book as rapidly as possible. I could stop there, because my noble friend the Minister has introduced the Bill with her customary diligence, but I hope that the House will indulge me if I spend a few minutes on the plight of motor neurone disease sufferers. I pay tribute to the tireless campaign waged by the Motor Neurone Disease Association to achieve the changes in the Bill, and indeed the similar changes already made to universal credit and other benefits.
Motor neurone disease is a terrible disease. It involves the degeneration of motor neurones so that muscles weaken, and moving, swallowing, speaking and breathing all become more and more difficult. There is no cure available. Because it does not generally affect the senses, sufferers are only too aware of the way in which their bodies are failing, which is a particularly cruel aspect of the disease.
There is no single test available for motor neurone disease, and its low prevalence means that it can take some time for a diagnosis to be made once the onset of symptoms is noticed. Once diagnosed, one-third of sufferers die within a year, and half die within two years. There are around only 5,000 people living in the UK at any one time suffering from motor neurone disease, which is probably why they have not been seen as a national priority. I am very glad that the DWP has now started to tackle their plight in the benefits system.
The rate of progression of the disease varies considerably, and this has caused huge problems in the past for motor neurone disease sufferers in getting access to benefits on a fast-track basis, because it was hard to pinpoint when the previous six-month horizon for a reasonable expectation of death came into play. The extension to 12 months and to an end-of-life approach is not a perfect solution but it should make it much easier for people to be fast-tracked on to benefits, which will do something to make life easier for them and their families as their lives are inevitably taken by the disease.
I thank the Government for making these changes and the ones already made in secondary legislation. I have just one request for my noble friend the Minister: I hope that she will commit to the DWP monitoring the impact of these changes and standing ready to make further changes if the data show that they do not deliver the benefits expected for MND sufferers and, indeed, any sufferers debilitated by life-ending disease.
My Lords, I declare my interests as a patron of the Motor Neurone Disease Association and vice-president of Marie Curie and of Hospice UK.
I hope that when the Minister responds to this very important short debate she will be able to tell us—if I may pick up on the points made by the noble Baroness, Lady Noakes—what happens if the person outlives their prognosis and the leeway period, which, according to the government website, allows an additional two years before the benefits come up for review. As the form is to inform the claim process, will there be a process of appeal if the application for benefits is declined at the DWP, and will there be the option of an independent second opinion?
Another area of concern—I will build on the points made by the noble Baroness, Lady Brinton—is how relatives will be informed that the benefit stops as soon as the person dies. This can become particularly important when people have given up their job and have become financially dependent on all the money coming in, because they are the principal carer and acting in a greater role than any of the paid professionals who may be involved in a person’s care. There is a real problem in supporting and preparing people.
In addition, as has already been stated, the prognosis of a year is pretty well impossible. Going through the website, I recognise that the Department for Work and Pensions accepts that it is a guess to start the process, and the information on the website implies that the DWP does not attach legal responsibility to the person who is signing the forms. There is no comeback should the person outlive the prognosis—one hopes that they do.
But what if somebody is consistently wrong? What is the threshold for even suspecting that there may be abuse of the scheme? Unbelievable as it may sound, we know that the furlough scheme in the pandemic was, sadly, abused, so we must have monitoring for any system that is put in place.
Some years ago, when we were campaigning for the DS 1500, we had discussions with departmental officials on the difficulty of predicting a six-month life expectancy. Over the years since the DS 1500 has been in place, I have wanted to know how many forms have been filled out annually and the timeframe for which people have received the benefit—but I gather that this data is not kept. Given the changes now, I hope the data will be collected to map whether there are areas of underclaiming and areas where there are particularly high numbers who live for three or more years with diagnoses that would not have been expected to have high survival rates, as it may indicate excellent clinical care or it may indicate an area of inappropriate diagnostic labelling. Modern IT systems should automatically generate useful reports from the data that will be held centrally.
Patients rightly campaigned for the DS 1500 system to be modified—as did the voluntary sector. The change to one year—although prognostication is notoriously inaccurate at that time distance—has some very distinct advantages. The consistency across the Department of Health and Social Care and DWP is welcome, particularly as the government amendment to the Health and Care Bill states that patients must be able to access the palliative care they need. This should help ensure that people are referred for the support they need when they need it, rather than the “too little, too late” scenario that has happened in the past and has led, very sadly, to bad experiences and badly managed deaths.
I hope that this will also lead to more open conversations with clinicians. It is easier for clinicians to help patients plan for the worst and yet maintain hope, and therefore help patients come to terms with living with uncertainty, which is the reality of a prognosis of the last year of life—aware that the prognosis of one year can sometimes be as inaccurate as tossing a coin. For the DS 1500, it was difficult for clinicians to say, “I think that you’re in the last six months of life”, because that sounded blunt and felt like delivering a death sentence. I think that was sometimes a deterrent to those conversations happening, so I hope the important conversations will trigger advance care planning, which is already an aspiration on the website. Even more useful is to ask the patient is to ask the patient “What matters to you?”, because that can inform best-interest decision-making and prioritisation, whereas planning often fails to match the evolving clinical scenario—particularly when it evolves in a way that nobody could have predicted.
It is absolutely right that there is no age restriction on the process. As the noble Baroness, Lady Brinton, so movingly described, some very young children need a great deal of equipment and skilled attention. But here is the real problem for parents—as has been said. They give up work to care for their child, but when the child dies, all the benefits suddenly stop, so they are left both bereaved and destitute. So I hope the DWP will use careful data analysis of benefits, timelines and time of death to have a better overview and explore ways that, prior to bereavement, the parent is given the anticipatory advice and support that they will need.
Turning to the forms, there are some aspects that I think need revision for clarification, I ask the Minister and her team to meet me to go over some of the detail on the form to iron out potential difficulties. It is in the minutiae of some of the wording, but we need to make this work as well as we can. The website makes it clear that the clinician will not face an adverse consequence if the patient lives longer than expected and that the benefit received under the special rules will have the leeway of a further two years, but will claimants be informed after, perhaps, two and a half years that they should prepare to transfer their claim through the standard route rather than suddenly feel threatened at the end of that leeway period by a potential perception of loss of funding?
Then there are those patients with a catastrophic life-changing illness or injuries who need long-term care and yet do not have a prognosis of less than a year. They also need their benefits fast-tracked early on, which can later be reviewed and applied in the normal way where processes are slower. I wonder how the Government see that we might be able to accommodate somebody who, for example, following a catastrophic accident and catastrophic head injury, needs a great deal of care and attention and will not improve dramatically enough to become independent.
However, with all of those caveats, I welcome all the work that the Government have already put into this—their thought, care and attention—and I commend the charities who have been campaigning for so long to make sure that people get the benefits that really will make a difference to the quality of life and will support clinicians in having those difficult but terribly important conversations.
My Lords, I welcome this Bill from the Minister. She has been a Minister now for a good period and has demonstrated a great sensitivity to the problems of people who are dealt with by her department.
Much mention has been made of charities, but the Minister may recall that I first approached her on behalf of the Midlands part of the Trade Union Congress. Mr Lee Barron, who is its regional secretary, took up this case because there were terminally ill people being thrown out of work. I know that this is not a Bill about putting them back into work, but Lee Barron and his assistant, Michelle Kesterton, did a lot of work, part of which was to get the benefits extended, and that has happened. The Minister may recall that we also had representations from the General Municipal and Boilermakers union on the same subject, from Martin Allen, its present representative, and his predecessor, Richard Oliver.
The key thing is that when people are in their final year of life, they should not automatically be deprived of any useful employment because, often, employment is something that keeps people going. I would like an assurance, which I know the Minister can give because she has already given it to me, that the department will in no way try to discourage people who want to try, even if it is only part time, to do a bit of work, because this often keeps them going.
The excellent report by the Marie Curie trust, which the noble Baroness, Lady Sherlock, kindly reminded me yesterday that I had lost yesterday and sent me a copy, makes the point about poverty and old age. Also, many people who are dying do not have these so-called loved ones around them. They are very much isolated and on their own, which is why support groups are so important, particularly to this group. Having read the report overnight, I commend it to all noble Lords who are interested in poverty and old age, as people approach their last time.
I have a couple of points to ask the Minister about. First, can she ensure that the fast track really is a fast track? I am sure that she will but, in her department, everybody wants a fast track. That is one of the problems that the DWP has, but this does need to be fast-tracked.
My second point is that we are debating this because we need primary legislation. I am not a great fan of secondary legislation, but I wonder whether we should not insert into the Bill a clause that would at least give the Minister the power, using a statutory instrument, to extend—or diminish, but I hope it would be extend—the periods in the Bill. If it is now a year and it used to be six months, and if medical technology keeps marching ahead, there may be a need for another change. Do we need primary legislation to do it?
My next point is the need for publicity, particularly for doctors. They need to know what the provisions are, how they can be used and how they can advise their patients. I am sure the DWP may wish to talk to the Department of Health and Social Care about the possibility of posters in doctors’ surgeries. There are quite a few posters in my doctor’s surgery, and they are almost all beneficial because they convey information and, generally, guidance towards a website or telephone number. Could that be done?
Most hospitals have patient care facilities, whether Macmillan nurses or other strategies. These people also need to know how the system works, so that when the consultant or doctor says, “I am now going to ask you to have a chat with Mary or Tom, who is going to be your principal point of content”, Mary or Tom know how the system works, what to advise patients and how to get them to begin the fast-tracking of the procedure.
In conclusion, I most certainly welcome the Bill. I thank the Minister for the hard work she has put in. It must be at least three years, if not four, since I first raised the matter with her. Of course, there has been the pandemic and many other things to deal with, but I welcome the fact that she has kept an eye on it and brought this to the House, where I am sure it will get a warm welcome and a rapid passage.
My Lords, like other Members I welcome the Bill and the changes it introduces. As the noble Baroness said, it is right that we pay tribute to some of the campaigners. The Scrap 6 Months campaign, launched by the motor neurone disease charity and Marie Curie, called for urgent review of the special rules for terminal illness. The campaign identified that more than 100 people a month will die within six months of being rejected for disability benefits, spending their last weeks fighting for these. The noble Baroness, Lady Noakes, described to us the situation suffered by people with motor neurone disease, as well as their specific and intensive care needs.
Dying people were being plunged into uncertainty and a web of complexity in the process of applying for benefits under the SRTI scheme. The DWP’s failure to recognise when someone was reaching the end of their life resulted in benefits being cut, non-medically trained assessors failing to understand the severity of the circumstances suffered by some individuals and, as the noble Baroness, Lady Finlay, identified, the need for an independent procedure for appeal. DWP non-specialist clinicians challenged medical evidence provided by doctors, which resulted in delays and rejected claims or lengthy application processes and untimely decisions, even though a medical examination was not necessary under the fast track.
The APPG for Terminal Illness published a report, Six Months to Live?, which also contributed to the policy debate on reform and put forward a number of important proposals. The report highlights some of the difficulties suffered because of long and arduous DWP processes. My noble friend Lady Brinton referred to this and to the frustration of people trying to process their claims. The noble Lord, Lord Balfe, also mentioned the issue of people being able to access the claims procedure properly and identified the need for publicity. The right reverend Prelate the Bishop of Carlisle really welcomed the idea of more clarity and a simpler process that is much more easily understood by claimants.
The changes themselves are welcome: the extension of the definition of “terminal illness” to 12 months and the benefits to be fast-tracked being extended to DLA, attendance allowance and PIP. As many Members have mentioned, consistency with the NHS is also to be welcomed. However, being diagnosed with a terminal illness is already difficult and distressing, not only for the person but for their loved ones. From what I have read, it seems that the benefits system should better support people in that situation, not exacerbate their distress or place unreasonable burdens on medical professionals. There are other things that could change that could make things easier and apply a much more compassionate approach.
Unfortunately there is plenty of evidence of the lengthy, complicated and often repetitive procedures and practices of the DWP, which obstruct people who have other major pressures in their lives. My noble friend Lady Brinton asked how long the process will take and hoped that the 12-month extension will not lengthen the process and make it more inaccessible. In the light of this evidence, will the Minister say how DWP processes will enable faster decision-making? Will the Government consider some form of special unit to be sure that the additional six months will not result in more delay to decisions on claims? The points my noble friend Lady Brinton raised about eligibility for benefits for children is an area that needs to be examined, and the noble Baroness, Lady Finlay, mentioned the need for more extensive examination of centrally held data to provide a background to policy-making.
The report of the APPG for Terminal Illness makes a number of recommendations that would improve the system. One is that a person who is diagnosed with a terminal illness based on the clinical judgment of a registered medical practitioner should be able to claim benefits through the special rules from the time of their diagnosis. What is the Minister’s response to that? When will the Government consider this more compassionate approach? Given the circumstances at the end of life, when doctors are reluctant to provide evidence that is distressing for the individual and their loved ones, this approach is far more flexible and compassionate.
The report further recommends that the DWP should adopt the same approach as it has taken for severe conditions, with a light-touch review of benefit awards under the special rules for terminal illness only after 10 years. This would provide a more flexible approach and would dispense with the constant need for reassessment and reapplication, which happens in too many cases.
Lastly, it recommends that the DWP ends the practice of non-specialists DWP assessors challenging and rejecting the medical evidence provided by clinicians to support a benefit claim under the special rules. This is another aspect of DWP working that needs review. Will the Minister respond on this?
Will the Minister assure us that there will be a review of DWP practices in the light of this legislation? It will be essential if the fast-track system is to work effectively, so that people at the end of life with special, intense and often costly needs receive the benefits on which they depend in a timely and compassionate way.
My Lords, I thank the Minister for her introduction to this short Bill and all noble Lords who have spoken. We have packed quite a lot into a fairly short time. As we have heard, the intention is to amend the definition of “the end of life” in existing legislation, shifting it from six months to 12 months and then, in effect, to change eligibility for five benefits so that those who are expected to live for between six and 12 months can get help more quickly. These changes are long overdue and these Benches very much welcome them. I too congratulate Marie Curie, MNDA and all the charities which have campaigned to get us to this point.
We would like to see the Bill on the statute book as soon as possible. The Government have already used secondary legislation to change eligibility for universal credit and ESA, which we welcome, but it means that, for now, there is a different set of criteria for the special rules depending on which benefit you apply for. The sooner we can get them together, the better.
Since we have a legislative process to go through, this is a chance for the Government to bring the House up to speed on how people with terminal illnesses are being supported in our country. So, I have a few questions. The Government offer two arguments for this approach, the first of which is to align DWP’s approach with that of the NHS. Some interesting comments have been made: by the right reverend Prelate the Bishop of Carlisle about the importance of this being truly holistic—looking at people’s physical, mental, spiritual and financial needs—and by the noble Baroness, Lady Finlay, who, with her characteristic expertise, has helped us to understand the nature of the conversations that might happen.
I pause briefly to say that I think some clinicians find those conversations easier than others. Given that so much hinges on this, it will be important for the Minister to work with colleagues in the Department of Health and Social Care to make sure that appropriate information and encouragement is given to all clinicians to cover the full range of issues at the 12-month point. For reasons that the noble Baroness, Lady Finlay, explained, this can be a little complicated because of the imprecision of diagnoses at that distance.
The second argument given by the Government is that, when the six-month rule was introduced in 1990, many people with a life-limiting diagnosis were unlikely to survive for more than six months, but that advances in diagnosis and treatment have since moved on and now people live for much longer. The question of how long people live is pertinent to the way the special rules are framed. The right reverend prelate the Bishop of Carlisle raised questions of prognosis. The noble Baroness, Lady Noakes, gave a brief but very helpful tribute to the MNDA and highlighted the challenges for people living with motor neurone disease.
As the MNDA has pointed out, some people will of course outlive their prognosis. They could find that they are still alive after the three years for which the special rules award is offered, but are very ill—perhaps ventilated, completely paralysed or unable to speak. At that point, they will be asked to make a new application for fresh benefits. The MNDA argues that, since motor neurone disease is incurable and progressive, the benefits awarded under special rules should be lifelong. It points out that, if you apply under the normal rules, you could end up with an ongoing award with only a light-touch review at the end of a 10-year point, but you do not get that under special rules.
Did the Government consider making some categories of special rules awards lifelong, or doing something of the kind mentioned by the noble Baroness, Lady Finlay, by considering whether someone in that circumstance might be better off in a normal rules process? Can the Minister tell the House how many people are in this position under the current rules? I am assuming that it will not be very many. How many people could outlive their diagnosis at the moment and therefore bump up against the three-year problem? Has the department estimated what figure this might be under the 12-month rule?
The noble Baroness, Lady Brinton, the noble Lord, Lord Balfe, and others asked how people will get to know about these rule changes; that is incredibly important. I understand that any third party can make a claim for benefits on behalf of someone who is terminally ill, even if they do not have a power of attorney or an appointeeship. Given that, it will be extremely important that clinicians know about this change, but also that family, friends and others should get to know that this is available for somebody who may seem some way away from the end of their life, unlike the situation right now. Can the Minister tell the House what the Government will do to make sure this is as widely known as possible?
The good thing about special rules claims is that they are fast-tracked and there is no waiting period. A number of noble Lords have asked how long this will take. The noble Baroness, Lady Brinton, pressed the point to make sure that the time taken to process claims does not increase as a result of expanding the case load. I understand that new PIP claims under special rules are currently being cleared in three working days, on average. That is marvellous but it contrasts with an average of 22 weeks for a normal PIP claim, and this is of course why we need special claims—because it takes such an incredibly long time to process a normal claim.
That means that, if somebody were to die in 18 months, they would be waiting for over five of those months to get their claim for PIP processed. Once they have made an application, if, at some point while they are still waiting to get the claim processed, they are told that they have less than 12 months to live, does that mean—can the Minister confirm—that they would automatically be moved on to the fast track and the claim backdated to when they first made an application? Will the Minister reflect briefly on whether it is really acceptable to take over five months to process a claim for PIP when the people waiting to get it may be severely sick or disabled?
We are also being told by the Minister that, in most special rules cases, the highest level of benefit is awarded, but the noble Baronesses, Lady Brinton and Lady Janke, made the point that that does not necessarily apply to all claimants, including children. As we have heard, children can receive the higher-rate mobility component of DLA only when they hit the age of three, and the lower rate from the age of five. I gather from Together for Short Lives that that is based on the advice to the DWP that only when the child gets to three can you work out whether they are unable to walk as a result of a disability, rather than their taking time to learn to do so.
The case was made by Together for Short Lives and by some noble Lords that this is not simply about mobility in the traditional sense. If children or their parents depend on a vehicle for bulky medical equipment or on being able to get to an emergency service quickly, they clearly have mobility needs, even if not for those reasons. I too would be interested to hear whether the Government have responded to the SSAC report from 2020 recommending that they revisit this question of mobility, particularly for children under three. Can the Minister also say whether the Government considered that applications made under the special rules for babies and children under three who have 12 months or less to live should allow access to the DLA mobility component?
I will not dwell on this for too much longer, but the question of poverty facing terminally ill people was raised by the noble Lord, Lord Balfe. I am glad he found the Marie Curie report to his profit; it is very interesting and I also commend it to the House. I was quite shocked by its statistic that one in six people who die in the UK every year die below the poverty line. Of those of working age who die, it is one in three; a third of those of working age who die, says Marie Curie, will die in poverty. It is worse for families with kids because they often end up having to give up work, with increased childcare costs.
Marie Curie makes a number of recommendations: early access to the state pension, extra help with childcare, people under 65 getting access to winter fuel payments, and the run-on of carers’ support, which was mentioned by the noble Baroness, Lady Finlay. What consideration is being given to those proposals? Will the Minister commit the Government to responding to this report in detail?
Finally, I pay tribute to all those who support people who are approaching the end of life: the medics, nursing staff, healthcare assistants, chaplains, friends and family, those in charities, volunteers, carers, taxi drivers, ambulance drivers and all those who support people through what is one of the most difficult but also important times, which comes to each one of us in due course. How we as a society treat people in the last year of their life is an indicator of our core values. We cannot stop people dying, but we can treat them well and at least ensure that they do not die in poverty. That should be our shared goal.
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—
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.