Social Security (Special Rules for End of Life) Bill [HL]
Wednesday 11th May 2022
(2 years, 6 months ago)
Lords ChamberRead Full debate Social Security (Special Rules for End of Life) Act 2022 Read Hansard Text
Social Security (Special Rules for End of Life) Bill [HL]
Tuesday 24th May 2022
(2 years, 6 months ago)
Lords ChamberRead Full debate Social Security (Special Rules for End of Life) Act 2022 Read Hansard Text Read Debate Ministerial Extracts
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 Brinton (LD) [V]
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.
The Lord Bishop of Carlisle
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.
Baroness Noakes (Con)
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.
Baroness Finlay of Llandaff (CB)
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.
Lord Balfe (Con)
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.
Baroness Janke (LD)
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.
Baroness Sherlock (Lab)
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.
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]
Monday 20th June 2022
(2 years, 5 months ago)
Lords ChamberRead Full debate Social Security (Special Rules for End of Life) Act 2022 Read Hansard Text Read Debate Ministerial Extracts
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]
Wednesday 22nd June 2022
(2 years, 5 months ago)
Lords ChamberRead Full debate Social Security (Special Rules for End of Life) Act 2022 Read Hansard Text Read Debate Ministerial Extracts
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.
The Deputy Speaker (Lord Faulkner of Worcester)
The noble Baroness, Lady Brinton, is taking part remotely, and I invite the noble Baroness to speak.
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]
Thursday 8th September 2022
(2 years, 2 months ago)
Commons ChamberRead Full debate Social Security (Special Rules for End of Life) Act 2022 Read Hansard Text Watch Debate Read Debate Ministerial Extracts Amendment Paper: Committee of the whole House Amendments as at 8 September 2022 - (8 Sep 2022)
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.
Matt Rodda (Reading East) (Lab)
I welcome the Secretary of State and the Minister of State to their new posts. I thank the Secretary of State for introducing this short but important Bill.
As we have heard, the intention of the Bill is to amend the definition of “end of life” in existing legislation, extending it from six to 12 months. That will have the knock-on effect of changing eligibility for disability living allowance, personal independence payment and attendance allowance so that individuals who are deemed by a clinician to have 12 months or less to live can have fast-tracked access to those benefits. We are, of course, supportive of those changes and have chosen not to table any amendments to the Bill. However, there are a number of points I would like to raise.
First, it is somewhat disappointing that it has taken the Government so long to bring in the changes. The Department first launched an in-depth evaluation of the special rules for terminal illness as long ago as July 2019. The findings showed clear support for extending the definition of end of life to 12 months. We then had to wait until July 2021 for the Government to announce their plans to bring in the change. In April 2022—a further nine months later—the Department amended the eligibility criteria for universal credit and employment and support allowance through regulation changes. Here we are another five months on and the necessary alterations to primary legislation to do the same for personal independence payment, disability living allowance and attendance allowance are only just making their way through the House. It is a difficult but unavoidable fact that while we have been waiting for this to happen, people who could have benefited from the changes have passed away.
My second observation is that we need reassurance from the Department that fast track really means fast track, and I am grateful to the Minister of State for indicating her support for that approach. In her speech on Second Reading in the other place, the Minister, Baroness Stedman-Scott, estimated that the changes brought forward in the Bill could mean that 30,000 to 60,000 more people may benefit from the special rules. She also stated that it currently takes an average of three working days for new claims and four working days for assessments for PIP under the special rules criteria. If those turnaround times are to be maintained, there will clearly need to be a significant increase in staffing capacity in the Department. What reassurances can the Secretary of State give us today that her Department will have the additional capacity needed?
Thirdly, I know that there are concerns among clinicians and others about the accuracy with which it is possible to determine that an individual is entering the final 12 months of their life. The new rules bring the Department’s definition of “end of life” in line with NHS guidance, which is welcome. However, the NHS itself acknowledges that it is,
“not always possible to predict”,
the end of life with complete certainty.
The Motor Neurone Disease Association, which, as we have heard, has done a lot of important work in pushing for this change, makes this case very clearly. Motor neurone disease often progresses very rapidly, with one third of people dying within a year of diagnosis and around half within two years. Yet it is impossible to give an exact prognosis, as the disease is so complex and unpredictable.
Under the current rules, many people living with MND are left to navigate the standard route for claiming benefits, which is entirely inappropriate given their circumstances. Although it is supportive of the changes, the association notes it would have preferred the UK Government to follow the Scottish example and introduce a criterion with no specific time limit, relying instead on the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause their death.
That leads us to a further point: benefits awarded under the special rules are granted for three years. Where an individual outlives their prognosis and the three years expire, they then have to make a new claim despite, in some cases, being completely paralysed, unable to speak or ventilated. That adds an unnecessary extra burden to individuals and their families and carers at an extremely difficult time.
We also need absolute clarity around how clinicians will be informed of the changes and, most importantly, how the Department will ensure that the relevant information is communicated effectively and in a consistent, sensitive and timely fashion. It is one thing to legislate for these changes, but another to ensure that they are filtering through to those who most need to understand them.
I cannot finish without recognising the incredible toll that caring for someone who is sadly at the end of their life has on family members and friends. Some unpaid carers will have given up their own job and become financially dependent on social security payments. It is imperative that they are supported and prepared for the stopping of benefits when the person they are caring for passes away. It is unacceptable that people who have fulfilled such an important role and—we should be honest here—saved the public valuable money should be left both bereaved and, on occasions, destitute.
That is, of course, particularly the case for parents. It is easy to focus on older adults when considering end of life care, but of course that is also the reality of families with terminally ill children. I echo the calls made so eloquently by Baroness Finlay of Llandaff and Baroness Brinton in the other place for a wider review of the benefits available to families facing that awful situation.
For example, the families of seriously ill babies and small children do not currently have access to the mobility component of disability living allowance. Many of those children require round-the-clock care and use ventilators, monitors, oxygen and other vital equipment. Although DLA is available to all families who incur extra costs as a result of meeting the additional care or mobility needs of a child, only those with children over the age of three can receive the higher rate mobility component. I appreciate that that falls outside the scope of the Bill, but it ties in with the need to ensure that individuals and families are given as much support as possible in these most difficult of circumstances.
I finish by reiterating that we are fully supportive of this Bill. I look forward to hearing the valuable contributions that I know others will be keen to make and to this legislation’s continuing to make its way through this House.
Justin Tomlinson (North Swindon) (Con)
As the Minister at the time who triggered these very welcome changes, I am very proud to speak in this debate. I must say that in my 12 years as an MP this is definitely my proudest moment, and this legislation showed me the very best of politics and some of the more frustrating parts of politics—I am certainly free to share some of those behind-the-scenes things.
First, I pay tribute to the people who made this happen and got us here today, starting with many politicians. This was a genuinely cross-party initiative, but the three politicians who stood out the most for me were the hon. Member for Newport East (Jessica Morden), who will also be making a contribution, my hon. Friend the Member for Northampton South (Andrew Lewer) and Madeleine Moon, a former MP. Throughout the process, they were kind, sincere, very generous and incredibly patient, something I will come on to later.
The leading charities that provided many cross-party MPs with a reminder of the importance of the issue included the MND Association, Parkinson’s UK and Marie Curie. The brains behind this legislation were a combination of my private office, Dr Emily Pickett, who is the DWP’s medical policy adviser, and her team.
We configured a roundtable of the greatest, including those charities that I have mentioned, plus Macmillan, the Multiple System Atrophy Trust, Sue Ryder, the National Bereavement Alliance, Hospice UK, the British Medical Association, the National Nurse Consultant Group, the Association of Palliative Care Social Workers, the British Lung Foundation, the Queen’s Nursing Institute, the Palliative Medicine Association and the Royal College of Physicians, and many, many hundreds more people who work on the frontline in healthcare and palliative care, along with families and patients, contributed. Ultimately, that showed what can be done when Parliament is working at its best, because we have ended up with united support across the board and we are all very pleased, because this will make a genuine difference to people.
I share the shadow Minister’s frustration that it took so long, believe me. I think I went through about five sets of DWP oral questions where the official line was: “We are working at pace across Government.” Believe me, a little bit of my soul disappeared as I saw the regular reminders, predominantly from the hon. Member for Newport East, to explain just how quick “at pace” is, and as I wondered how I could come up with a slightly different variation of those words. In defence of, first of all, the parliamentary process, what would normally happen is that a Secretary of State would ask their Ministers to work out where they would like to prioritise some changes. That would be presented and then as a Department through negotiations with Treasury, particularly where things are going to cost more money, we would work out which ones we could deliver and when. If we have an idea that we want to do something, generally we try to work out how to get from A to B.
At the time, I was working for the wonderful Amber Rudd, who was just a whirlwind of enthusiasm and super sharp. Anyone who had to present their ideas to her really needed to be on top of their brief. She did not suffer fools, and this was one of the ideas that I pitched to her. Then I mentally thought, “Right, over the next three months we’ll start working up some options and work out some costs.” To my horror, the following morning, on Sky News I think it was, she announced that this was then a priority, so very quickly Emily Pickett and her team and I had to be locked away to try and come up with how we would get from A to B.
Initially, the general consensus of stakeholders is what we are now seeing proposed in Scotland. It would have been very tempting to follow that route, and certainly the intentions of the Scottish Government were good, but as they soon discovered, it is not that simple, because we are all terminally ill. Therefore, we cannot possibly give everybody the fast-track access to the benefit, because the system would be overwhelmed. It has to be prioritised for those who are within a certain period of time. What the Scottish Government have discovered is that they now have to create a whole raft of exemptions to the principle of just being terminally ill. They have now created an even more complex process than the original six months rule, which was deemed to be flawed because it was too complex.
Fundamentally, we arrived at this solution because—GPs are the best at summing this up—there is no worse role for a GP than to have to sit one of their patients down, someone who they have been supporting, and say, “We have reached the end of the road. We are now switching our focus to palliative care.” As the current system stood, the GP would have to have that conversation twice, once at roughly the 12-month point and once at the six-month point, to trigger the fast-track process through the DWP for much-needed financial support. The very simple solution was to merge the two conversations together so that it is consistent.
That had the double benefit of reducing the need for the GP to have that dreadful conversation twice, but also, crucially, of raising awareness, because after that first conversation patients and their families understandably have got a million and one other priorities to navigate in their precious final moments. At least now in that conversation, as the palliative care process is being planned, they can be made aware of this additional financial support, and in real terms this will typically reduce the period to access that support from 16 weeks to less than five days.
I understand the shadow Minister’s point about making sure that is resourced. We can be confident of that, because the process is relatively straightforward. In effect, once someone has that note from the GP, the support is automatically triggered, which is why we do not need the 16 weeks. That helps with some of the pressures and will probably save a little bit of time for those who do wait 16 weeks by lifting them out of that unnecessarily long process.
It was a frustration in Parliament that this took so long, and it was one of those where everybody agreed. I remember a Treasury Parliamentary Private Secretary lobbying me very strongly on behalf of one of their constituents, saying, “You’ve got to get this sorted.” I said, “Right, well you can take that back as a note to your own Department then, thank you very much.”
I was absolutely thrilled that, just before my final few days as a Minister, we got the confirmation that we were able to make those immediate changes to the newer benefits. I am incredibly proud, as I said, that the Bill will now sort out the final parts of PIP, DLA and the attendance allowance.
My final plea is to our Scottish friends. I regularly met my Scottish ministerial counterpart, and I put it formally on the record that I absolutely understand that they did it with good intentions. I also understand that, as a matter of principle, they always want to do something different because, in their mind, that strengthens their case for independence. What they have done, however, is create a system that is more complex, because adult disability payments remain under the UK Government’s control, so there is the nightmare scenario of still having the two things. All those stakeholders, particularly Marie Curie, would love to see the Scottish Government adopt our approach in this case, so that there is a consistent approach. Terminal illness is not a time for political divide and debate. That is my plea, so that everyone can benefit.
I thank everybody who made this possible. Everyone who has contributed will have made a genuine difference to people in their hour of need, and we can collectively be very proud.
Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)
I welcome the new Secretary of State and Ministers to the Front Bench. This Bill is a good place to start their new jobs. It is not a massive piece of legislation in its content, but its effect is seriously important for people. In welcoming it, it is important to stress that, but also to give voice to those who have suffered and had frustrations during the time that we have been waiting for this to happen.
This is a small but hard-fought step that will make the last days of life easier for the families and loved ones of those who are diagnosed with a terminal illness. Even though I still believe that the Bill does not go far enough, it is important to welcome that. Thousands of terminally ill people who were previously denied fast-track support will now get the help they need, which is hugely important.
There are also the thousands who did not get much-needed help in the time it has taken Governments to act. I heard the words of the previous Minister, the hon. Member for North Swindon (Justin Tomlinson), and I will talk about some of the positive things in a moment, but all the pre-laid excuses about why it has taken so long do not cut ice with the people who have suffered. That should be acknowledged when we are talking about this important issue.
The action needed was simple: scrap the six-month rule and make life a little easier for folk who do not have long to live—or even to get their forms in—so they can receive support and advice. The ask was to get rid of the arbitrary date, which was inhumane; I still think that having an arbitrary date is inhumane, but it is better than what we had before. The moral imperative is, and always was, to just do the right and decent thing for people and give folk who are dying some dignity in whatever time they have left.
That is what the Bill will do in some measure. It will make a difference to those at the end of their lives. It will relieve the financial worries of families who have received the news that no family and no person wants to hear. Moreover, it will ensure that they get fast-track support across all social security payments for the first time.
The Bill has been a long time coming, as I have said. We have many frustrations about how it has been handled, which I will come on to, because, as I said, I think it is important to give voice to them, but I thank the staff at the Department for Work and Pensions who have worked on this policy change. In my capacity as chair of the all-party parliamentary group on terminal illness, I thank outgoing Ministers for the constructive meetings that we have had over the years on this issue.
For me, the story began in 2017 when I heard the experiences of my terminally ill constituents and what they were going through from colleagues in the incredible Macmillan citizens advice bureau in Inverness. Indeed, it resonates with me still today. It is one of the sharpest memories that I have of any meeting I have ever had in my parliamentary career. I sat in a room with these battle-hardened—and, I have to say, battle-weary—professionals trying to help people at the end of their life, and I am not ashamed to say there were tears in that room as I heard their stories.
I could not believe what I was hearing, and I had sat opposite the Government Benches and heard quite a lot up until then. Even then, I thought that surely there must be some kind of mistake here, that it was simply a policy flaw that only allowed people to claim benefits if they had a diagnosis of six months to live, and that just highlighting this would allow us to move on and get this changed for people because, as I have said, and I will say again, it is inhumane for people. But no, this was a culture of hostility—I have to underline this—in the universal credit regime.
Terminally ill people also lost a lot more than just their payments at that time. Countless terminally ill people were forced to go to work coach meetings, and others had their social security payments stopped entirely. Some of these people died from their illness having not had their support payments, or their payments had not even started. Others had actually had their payments stopped, and were told that they no longer qualified for this.
As I say, with the new universal credit regime, terminally ill people also lost their right not to find out about their terminal diagnosis. Previously they could choose not to be told of their diagnosis, and that was possible because their advisers completed the forms on their behalf. With universal credit came a change to the forms, confusion at the DWP, a litany of failures and a “computer says no” attitude to problem solving. The system was pretty miserable for terminally people before the universal credit roll-out—no one has ever accused the DWP of being particularly keen to put dignity at the heart of its operations—but after the roll-out it was beyond a nightmare for people.
Back then, I reached out to Marie Curie and, with Members from across the House, set up the all-party parliamentary group on terminal illness. We launched a truly cross-party effort to have the issues arising from the universal credit roll-out resolved, and to get this Government to scrap the arbitrary six-month rule. We joined forces with the all-party parliamentary group on MND and, working with the MND Association and Marie Curie, we launched the Scrap 6 Months campaign.
I think it is important at this point to pay tribute to the former MP Madeleine Moon, who did so much work. I believe she is in the Gallery, which is fantastic. She deserves a lot of credit and praise for the work she did in pushing this forward, and I was delighted to work hand in hand with her, as I promised I would, to try to get this issue highlighted. I must also pay tribute to the hon. Member for Newport East (Jessica Morden), who has taken up the mantle with Bills of her own. Indeed, I have had my own ten-minute rule Bill on this subject.
We had two active APPGs, a cross-party approach and amazing campaigners who, with so much grace and humanity, laid everything on the table at evidence session after evidence session. An example is Michelle McCluskey, whose mum died of a cancer tumour, weighing just 3 stone after the DWP stopped her £117 a week benefit. She relayed the pain and suffering this caused her over and over again to the media and in evidence sessions, trying desperately to ensure that nobody else had to endure the same. She, like other amazing campaigners, such as Mark Hughes, who himself has a terminal illness, and others who have campaigned with terminal illnesses, achieved this change today. This change is their victory—this is their moment—and I want to put on record my thanks to each and every one of them, and to the teams at Marie Curie, the MND Association and MND Scotland for all they did to lobby this Government over the past five years to just simply do the right thing.
Back in 2017, when we started to form the campaign, we must have been much less jaded as we seriously thought, given how horrendous the situation was and how easy it was to fix, that this Government would act, but it is now 2022 and, thankfully, the legislation is now going through its remaining stages today. Although I am happy—I am happy this is happening, believe me, because as a result, thousands of people will get the fast-access support they need—and I welcome the Bill, I must highlight the human cost of this Government’s inaction. Year after year we produced reports, held evidence sessions, met Minister after Minister, and highlighted real and devastating cases. We were promised that action would come. I have heard stories of the internal workings, but people who are dying do not really want to hear those. They want action to help them and their families at that time.
We held evidence sessions, and every time we were promised that action would come. Then there was a reshuffle and a new Minister, more promises of action, another new Minister and yet more promises of action, then yet another Minister and so forth. All the while, the Government were telling us that the review was imminent, and all that time we were losing campaigners to their terminal illnesses as each new Minister came and went. That time cost many more lives than we ever foresaw. Back in early 2021, Marie Curie estimated that until that point around 6,000 people had died waiting for this change.
Let us remember what we are talking about. This is not a budgetary change or a big costly exercise; this is about faster access to help for people who are dying from a terminal illness. Five years from when I first raised the issue with the then Secretary of State, five years of campaigning by so many incredible people, and we are here—it is welcome. However, this is a story of a failing Government who need to understand the issues around this. Back when I first raised the issue with a UK Minister, I also raised it with the then Scottish Minister responsible for the roll-out of Scotland’s new social security operation, Jeane Freeman MSP. Her response was almost immediate:
“Thank you for highlighting this issue and we will find a way to ensure this never happens with the new Scottish Social Security Department.”
True to her word, for personal independence payments the Scottish Government have taken an open-ended approach to defining terminal illness for financial support. I have yet to have one complaint in my inbox that people are not getting that support, so I do not see the difficulties that have been highlighted. The Scottish Government chose to start from a place of putting those people and their needs first, and to find a way to make the system work while putting dignity and respect at the heart of the process. That is in sharp contrast to this Parliament, where the internal struggles of the Tory party have seen us reach our fifth Secretary of State for the Department for Work and Pensions in five years, and a hostile approach that is not limited to the Home Office but reverberates across Departments.
Justin Tomlinson
I absolutely understand the good intentions behind what the hon. Gentleman sets out, but the fundamental flaw is that it relies on people who are terminally ill knowing about the support, and how to navigate what is now a complex situation in Scotland. Under our rules, the 12-month rule, support can be automatically highlighted by GPs at the same time as palliative care. Not only is that a better system, but people who would otherwise unknowingly miss that support will get it. Will he lobby the Scottish Government to listen to the stakeholders he has praised and mirror what we are doing?
Drew Hendry
I thank the former Minister for his intervention, and I would say two things. First, the principle in Scotland was to ensure that it was not a DWP operative or contracted-out person who made the decision, but clinicians and health professionals. This is not a particularly party political issue, but I said that I would give a voice to the frustrations of people of all political persuasion, and none, who have struggled and suffered through this process, and that is what I am doing. I will always work to try to get a problem ironed out, should a problem exist, but I am not faced with the same content in my mailbag that I had in previous years due to difficulties with the DWP.
Like other Departments, the DWP is barely functioning at the moment, so there is real work for the new Secretary of State and Minister to get into. Staff from offices across the Chamber cannot get answers for our constituents, and the situation is even worse for colleagues in local citizens advice bureaux. People living with terminal illness face housing and fuel poverty on top of the rising costs that come with having to live with a chronic health condition: they have to stay in and heat their houses because they have to be as well as possible in those houses. People living with terminal illness face many ongoing issues, and they, like millions of households across the nations of the UK, are being failed if that is not heard. The Government must listen to those demands to treat dying people with dignity and respect and ensure that more people do not die stressful deaths in poverty due to inaction.
Jessica Morden (Newport East) (Lab)
I join in congratulating Ministers and the Secretary of State on their new appointments. I do not think that anybody wants to delay the legislation further for the 30,000 to 60,000 people who will benefit from the change, so I will confine my remarks to Second Reading.
It is a pleasure, as ever, to speak in support of the Bill, which represents an important milestone in the long struggle to improve how our benefits system treats the terminally ill. That we are debating this vital legislation in Government time is not an accident but the result of years of dogged work by organisations such as the Motor Neurone Disease Association and Marie Curie, both of which were of huge support to me when I introduced a ten-minute rule Bill on the subject in 2020. It is also, as others have said, testament to many local volunteers who support those organisations’ work in their communities. On that note, I thank Judith Rice and the very active south-east Wales branch of the MND Association that brought the issue to my attention and has continued to lobby for change.
Like the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), I pay tribute to campaigners across the country including Mark Hughes and Michelle McCluskey. He is quite right that this is their victory, along with those organisations. I also pay tribute to my very good friend Madeleine Moon, the former Member for Bridgend, who I see is in the Gallery. I am glad that she is here to see our proceedings. Her campaigning work on this and her zeal was born out of her own tragic loss. She was particularly dedicated to the cause. The hon. Member for Inverness, Nairn, Badenoch and Strathspey, as chair of the all-party parliamentary group for terminal illness, did a lot of good work in this area by calling out the systematic injustices faced by those living with terminal illness. I thank Mark Jackson from Marie Curie as well as Alison Railton and Lana Ghafoor, both formerly of the MND Association, who were of great help to both the all-party parliamentary group and to me on the ten-minute rule Bill.
I also thank the Government for listening. While I and others will be critical of the delays in getting legislation to the Table over the last two or more years, I am grateful that we are here today and that Ministers have recognised the broad cross-party support for this change. I thank the former Minister, the hon. Member for North Swindon (Justin Tomlinson). There was dogged campaigning on this issue, but he did listen and move things forward. Today, he has had the chance to set out some of the complexities, which will be on the record.
As others have outlined, the Bill will bring an end to the hated six-month rule: a cruel stipulation that forced many of the most vulnerable people in our society to prove that they had six months or less to live to receive benefits under those special rules. The six-month rule was always illogical for those living with complex and unpredictable terminal illnesses such motor neurone disease, given that an exact prognosis of life expectancy within a half-year window is often impossible. It is a disgrace that so many households were pushed through that inhumane bureaucratic hoop at a time of unimaginable pain and worry.
Thankfully, as others have said, the six-month rule has already been removed from the special rules claims for ESA and universal credit, and the Bill will ensure that the same is true for PIP, attendance allowance and DLA. It is crucial that the Bill has a swift passage onto the statute book. For that reason, colleagues in the Lords ensured that it passed through the other place unamended. On behalf of terminally ill people in my constituency and those across the country who simply cannot afford to wait any longer, I support a similar course of action here. The six-month rule may soon be consigned to history, but there is still so much more to do to ensure that terminally ill people are afforded the dignity and respect they deserve from our social security system. I want to speak to some of those connected, ongoing injustices today.
The three-year award duration rule is still in place, forcing terminally ill people to reapply for their benefits if they live for longer than three years. The Motor Neurone Disease Association has pointed to cases where people who outlived their prognosis but were extremely ill—completely paralysed, ventilated or unable to speak—received letters telling them their benefits would stop unless they made a new claim. As with the six-month rule, that is not just cruel but illogical. For example, an applicant can receive a 10-year personal independence payment award with only a “light touch review” after a decade of having a severe or lifelong disability, but if they have a terminal illness they might be made to make a full reapplication after just three years. That makes no sense.
Another issue to look at going forward will be the 12-month rule, which has replaced its six-month predecessor. While it is clear that the DWP wanted to ensure that some timebound definition for the special rules remained in place, it is important that Ministers commit to reviewing the impact of the change to see if it is having the desired effect, or whether significant numbers of terminally ill people are still being disadvantaged. The Government must be diligent in monitoring that and keep all options on the table for the future, including looking at whether a timebound model is more appropriate than a timescale-free approach, such as the one adopted in Scotland. I hope the Minister can speak a bit more to that later on and at the very least commit to a regular evaluation of the new system.
It is important to note that the Bill will not be enough in itself to protect dying people from falling into poverty. As Marie Curie pointed out—this was also raised by the hon. Member for North Ayrshire and Arran (Patricia Gibson) at business questions—the Bill covers access to benefits but not the adequacy of those benefits. Research shows they are all too often inadequate in meeting the impact on finances caused by the additional costs and loss of income that follow a terminal diagnosis. Marie Curie highlighted the cumulative impact of the benefits cap over the last 12 years, which has meant that in real terms working-age benefits are now less generous than they were under the last Labour Government. Benefit rates had fallen behind inflation over the last decade, even before the current cost of living crisis. Marie Curie’s research shows that 90,000 people die in poverty each year in the UK, with those of working age twice as likely to fall into poverty at the end of life. That number is only likely to have gone up over the last eight months, with household bills, the price of food and other essentials going up and benefit rates not rising to meet the shortfall. We face the prospect of more terminally ill people falling into poverty.
I urge the Government to engage with Marie Curie on its “Dying In Poverty” campaign, which had its launch yesterday in Parliament. The campaign’s aim is to ensure that everybody with a terminal illness is able to access the financial support they need to cope with the cost of housing, energy, childcare and disability at the end of their life. That is really important. It includes looking at proposals to ensure that terminally ill people of working age are able to access their state pension early, and, in the immediate short term, at targeted support on soaring energy bills for terminally ill people given their particular vulnerability to fuel poverty.
This afternoon is one of the rare occasions when the whole House is united in our determination to improve how our social security system treats some of the most vulnerable people in our society. That is important, and this legislation is really important. What is doubly critical, however, is that the changes represent a starting point rather than a full stop. We must do more and strengthen our resolve to ensure that none of our constituents or loved ones ever face the indignity of spending their final months worrying about whether they will have enough money to make it through the week. Until the wonderful day that cures are found for the wretched terminal illnesses that blight so many lives, our priority should be to ensure that our welfare system affords every dying person the dignity, decency and respect they deserve. It cuts to the core of what we want our social security system to be and what we want our country to stand for, but I am thankful today for this legislation.
Patrick Grady (Glasgow North) (Ind)
Like other Members, I am keeping the Queen and her family in my thoughts and prayers at this time.
It is always refreshing when consensus breaks out in the House, and that has, more or less, been demonstrated this afternoon. I pay tribute to the Members who have spoken who have campaigned on this issue for considerably longer than I have—for many years. We will almost certainly all have constituents who stand to benefit almost immediately once the Bill is implemented. Indeed, many of us will have friends and family, in our constituencies or elsewhere, who will feel the positive impact.
As a number of Members have noted, the direct application of the Bill in Scotland will be partial, because the disability living allowance and the personal independence payment have been replaced by the child and adult disability payment schemes respectively. In due course, the attendance allowance will be replaced by the pension age disability payment.
The Scottish Government have taken a distinct approach by placing dignity, fairness and respect at the heart of social security, which they recognise as a human right. They think that it is not about the beneficence of the state but is something that people are inherently entitled to, so that they can live an adequate and humane life. Therefore, when these payments are made available to people in Scotland who have received a diagnosis of a terminal illness, there will not be a specific time limit. Social security becomes available if a clinician determines that their patient has
“a progressive disease that can reasonably be expected to cause the individual’s death.”
The UK Government will at some point have to review the implementation and effectiveness of the Bill after it has been enacted—I hope to have a bit more to say about that in Committee—and when that time comes, they should look carefully at the experience and approach being taken in Scotland and at whether it is working.
The overall costs of the Bill to Government—whether in Scotland or the UK—are not exorbitant, but the difference that will be made to the lives of those in receipt of benefit will be significant. The 12-month limit, instead of a six-month limit, will remove uncertainty in the most difficult of circumstances and provide quicker and easier access to support at a time when it is needed most. That will be true across the spectrum, no matter the age of the individual or the shape of the household. It does seem, however, that the changes will be particularly welcomed by people and families of working age, who often feel the impact of a terminal diagnosis particularly hard.
As others have said, Marie Curie is one of a number of organisations who have campaigned for many years for the Bill to be introduced. All those groups should be congratulated. Marie Curie research shows that 90,000 people die in poverty every year in the UK. One in four terminally ill people of working age spend the last year of their lives in poverty, so the quicker and easier that it is to access these benefits, and the earlier that that can be done in the diagnostic and clinical journey, the better. With a terminal diagnosis, time becomes even more precious, and that time should not be frittered away because of money worries or state-imposed bureaucracy.
The Marie Curie “Dying in poverty” report contains some powerful and moving testimony from people and families around the UK who are struggling to make ends meet while dealing with a terminal illness. One of those who shared their experiences is Melanie, who, as well as being a constituent of my hon. Friend the Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry), is a close personal friend of mine. I have known her husband, Tom, since we were the same age as their wee boy is today—he is also my godson—and I had the immense privilege of being the best man at their wedding earlier this year.
Mel spoke to the BBC about how radically their lives have changed since she was diagnosed with stage 3 cancer last year. They are experiencing what many families and households experience when one of their number becomes terminally ill. The chances are that the person with the illness stops working and at some point begins to lose contractual or statutory entitlements to sick pay. However, with reduced mobility and greater support needs, their partner finds that they, too, need time off work and perhaps a reduction in hours, which, in turn, means a further reduction of income. That is at a point when costs and outgoings begin to increase—for adaptations to the house, more specialised food or drink and more frequent trips to the hospital—and that is exactly what has happened to Mel, Tom and their family.
When Mel gave her testimony to Marie Curie and the BBC, she said it was not because they were special—although they are very, very special indeed to me—but because what they are experiencing is typical. Cancer support forums and other terminal illness support groups are full of such stories, and we have heard others from across the House. For thousands of families like them across the country, the situation this winter is not going to get any easier. Skyrocketing energy prices will lead to exceptionally difficult choices, even with the support packages announced today. “Heat or eat” is a phrase that we hear so many times in this Chamber, but that is the almost impossible choice facing people with a terminal illness. Warmth and good nutrition are essential if medical treatments are to have any chance of prolonging or improving quality of life and if palliative care and pain medication are to have any kind of impact. It is not just about the costs of food and fuel; energy-efficiency measures such as a new boiler, a window or wall insulation are rarely completely cost-free. That means more up-front capital expense at a time when savings are dwindling, if they still exist.
The last time Mel and I spoke about the Bill, she made an important point. The changes that we are debating today and the further changes that Marie Curie and others are calling for are not specifically about tackling the wider cost of living crisis that is affecting the country today. Even if inflation were low and energy prices were stable, research shows that a terminal diagnosis could cost a household as much as £12,000 to £16,000 per year. People need support. People are entitled to support to help them to get through these most difficult of times, focus on their life, their family and their loved ones, make memories and savour the moments while they can. They should not have to worry about whether they can keep their houses warm or fill up the tank to drive to hospital for treatment.
Urgent action must be taken to support everyone who is feeling the impact of the cost of living crisis, including those who are diagnosed with a terminal illness, but that needs to happen above and beyond the provisions of the Bill. For working-age households in particular, a terminal diagnosis often creates its own cost of living crisis or, worse, cost of dying crisis. Basic human dignity should mean that those who can no longer be an active part of the workforce and who are faced with the end of their life are adequately supported to spend what remains of their time as comfortably as they can.
The Marie Curie report makes some recommendations for further steps, such as bringing forward eligibility for the state pension. We might be able to discuss that point in a little more detail in Committee, but for now I think we need to welcome the consensus for the Bill’s Second Reading. For some families, as my hon. Friend the Member for Inverness, Nairn, Badenoch and Strathspey said, it has come too late. It has taken years of campaigning to bring about a change that will cost very little to the Government but that might make all the difference to those who will benefit.
Passing the Bill today will not be job done. Its provisions must be kept under review and benchmarked against better or best practice in Scotland or elsewhere. If individuals and families, like my friends, who want to make the most of their time together after a terminal diagnosis think that further, different or more support is needed, they should be listened to and it should be provided.
Ms Karen Buck (Westminster North) (Lab)
May I welcome the new Secretary of State, who is not in her place, and the new Minister of State? This is a short but important and welcome Bill that has rightly been approached in a spirit of consensus and in a largely non-partisan manner. Hon. Members on both sides of the House and former Members have campaigned hard over many years to get us to this point; it may feel inevitable now that we have reached it, but I know that it does not feel inevitable while people are campaigning for it. The former Minister, the hon. Member for North Swindon (Justin Tomlinson), played his part as well. All credit must be paid to everybody who has brought us to this point, including the charities and campaigning organisations that have done so much work and have brought the evidence to the Government for making the change.
All Members who have debated the Bill this afternoon or in the other House agree that the experience for people with a terminal illness is almost inevitably one of financial worry as a result of lost earnings and additional costs. At the very time when they need the least stress in their life, financial worries all too frequently add not just to their own stress but to that of their loved ones and those who care for them. The last thing that people with a serious illness or a terminal condition need is to go through the worry of making benefit applications and amassing evidence. The fewer cliff edges in their path, the better. We need to do everything we can to reduce the stresses for people who are already living with unimaginable stress. The Bill is welcome because it will do that. It will relieve stress for many, many people for a considerable period.
As my hon. Friend the Member for Reading East (Matt Rodda) made clear in opening this short debate, it is a shame that it has taken us three years to proceed from the start of the evaluation of the special rules for terminal illness to where we are now, but we are none the less relieved that we are passing legislation, and doing so with everyone’s support. We want these changes to proceed with all speed. However, there are one or two areas in which we have sought additional assurances; no doubt they will be referred to in Committee as well.
First, can we be assured that as we pass from the general into the specific—the opening up of entitlement to potentially tens of thousands of individuals—no further barriers will be put in the way of claimants, and the system will have the capacity to process applications swiftly and compassionately? Perhaps during the Bill’s further stages the Minister will be able to say a bit little more about what capacity can be guaranteed in the Department for Work and Pensions to ensure that that will be possible.
Secondly, we have heard a little about the need for us to monitor the potential for different approaches as the Bill proceeds. As we heard from my hon. Friend the Member for Newport East (Jessica Morden), there will still be a great deal to do once the six-month rule has been consigned to history. It is important for us at least to keep an open mind as we monitor the implications of these changes, in view of the inevitable trade-offs. We must ensure that a time limit which has the benefit of administrative simplicity does not exclude the exceptional needs of people with an illness, because health conditions are so imprecise and the evaluation of the medical profession is inevitably precise. The circumstances of those whose condition takes them just over a period of qualification should be considered flexibly and compassionately. A more open-ended approach may be more complex, but it can ensure that individuals are treated in a more dignified and compassionate manner.
Obviously we have no intention of delaying the Bill’s progress. However, we seek assurances from the Minister that these issues will be considered further, that the impact will be closely monitored, and that attention will be paid to the merits of an alternative approach. That said, I hope that we can now move very quickly to complete the passage of the Bill.
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]
Thursday 8th September 2022
(2 years, 2 months ago)
Commons ChamberRead Full debate Social Security (Special Rules for End of Life) Act 2022 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Committee of the whole House Amendments as at 8 September 2022 - (8 Sep 2022)
The Chairman of Ways and Means (Dame Eleanor Laing)
Just before we begin proceedings in Committee, may I add to the many statements that have been made this afternoon? The whole House, my constituents in Epping Forest and, indeed, everyone throughout the country is thinking of Her Majesty and the royal family. Our hearts go out to them.
Clause 1
Rules to apply where death expected within 12 months
Question proposed, That the clause stand part of the Bill.
The Chairman
With this it will be convenient to discuss the following:
Government amendment 1.
Clause 2 stand part.
New clause 1—Impact and policy review—
“(1) The Secretary of State must conduct a review of the effectiveness of this Act.
(2) Before commencing the review, the Secretary of State must consult the Scottish Ministers, the Welsh Ministers or the Northern Ireland department on the terms of reference for the review and on the appointment of a person to conduct the review.
(3) The review must consider the findings from the evaluation of the special rules for terminal illness process published by the Department for Work and Pensions in July 2021.
(4) The review must in particular take into account the impact of this Act on—
(a) the quality of life and experience of poverty of the recipients of the relevant benefits,
(b) the well-being of carers and dependants of the recipients of the relevant benefits,
(c) the clinical care of the recipients of the relevant benefits, and
(d) the level of take-up of the relevant benefits.
(5) The review may consider and make recommendations for further provision in relation to financial support for people approaching the end of their life (where death can reasonably be expected within the next 12 months), such as bringing forward the date of eligibility for an individual’s state pension to align with the date from when the special rules apply to that individual.
(6) The final report of the review must take account of any contribution made to the review by or on behalf of the Scottish Ministers, the Welsh Ministers or the Northern Ireland department.
(7) The Secretary of State must lay a report of the review carried out under this section before both Houses of Parliament no later than 18 months after the date on which this Act is passed.”
This new clause would require the Government to conduct and lay before Parliament a review of the effectiveness and impact of the Act, with requirements to consult Scottish and Welsh ministers and the Northern Ireland Department.
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.”
Patrick Grady
As others have said, there is a consensus across the House and I do not intend to do anything to disrupt that with new clause 1. It is probing by nature and the probing has taken place, because the Minister has responded in quite some detail, for which I am grateful, on some of what it was trying to achieve. It is worth spelling that out for the record, even if the exchange is a bit back to front as a result.
We heard on Second Reading that even with the Bill, thousands of households will continue to experience poverty as a result of a terminal illness diagnosis. The Government should therefore be prepared to keep the impact of the changes under review, which is what new clause 1 would require. In doing so, they should look at practice elsewhere, which would obviously include the devolved Administrations. That is why that specific requirement is in the new clause. The Scottish Government have decided to take a different approach—a distinct human rights-based approach—to social security. In this specific context, there is the deliberate lack of a time limit on the definition of terminal illness, and the qualification for payments is determined by a clinician, rather than by Government bureaucracy.
Justin Tomlinson
To be crystal clear, both systems have a clinical professional making the decision—there is no difference. Furthermore, there is no additional money in either our system or Scotland’s system. It is just about how quickly a person can access the fast-track service.
Patrick Grady
That is quite helpful. In the spirit of consensus, I think I would say that this is not job done. That is what I was trying to achieve with my amendment. The passing of the Bill is not where the Government tick a box and everyone pats themselves on the back and goes away. We will have to keep the impact of this under review. Yes, people both north and south of the border will have to look at how things are panning out and come back to it. That is the point that we are trying to make. The amendment provided the opportunity for that point to be made on Second Reading.
Subsections 4 and 5 urge us to consider what wider support might be available, even once people are able to access the additional benefits available through the Bill. That is why Marie Curie and others are calling for the state pension to be paid to anyone who is dying of a terminal illness regardless of their age. Working age social security payments, such as universal credit and employment and support allowance, are just that—they are security payments for when work is not possible or available for whatever reason. A pension is a contributory system. It is a contract. It has been paid into, at least in theory—that might not be how the state pension works in practice, but that is the theory behind it. Many private pensions will pay out, or have the option to be paid out, when a terminal diagnosis has been made, so allowing the same access to the state pension would be a further significant step forward in ensuring that people of working age who are terminally ill can spend their remaining time with some certainty and comfort.
The Government must agree that, in the 21st century in the UK, nobody should have to die in poverty. That is why this is a probing amendment. I am grateful for the pre-emptive response from the Minister and that she has taken this in the spirit in which it has been tabled. I hope that she will confirm that the impact of the Bill will be kept under review, that the Department will work with and learn from the experience of Scotland and elsewhere, and that, when and if more support is required for people, such as access to the state pension, it will be provided.
Question put and agreed to.
Clause 1, accordingly, ordered to stand part of the Bill.
Clause 2
Extent, commencement and short title
Government amendment made: 1, page 2, line 1, leave out subsection (6).
Clause 2, as amended, ordered to stand part of the Bill.
The Deputy Speaker resumed the Chair.
Bill, as amended, reported.
Bill, as amended in the Committee, considered.
Third Reading
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.
Matt Rodda
I thank the Minister for her remarks as well as all the hon. Members who have taken part today, including my hon. Friend the Member for Newport East (Jessica Morden); the former Minister the hon. Member for North Swindon (Justin Tomlinson); the hon. Member for Glasgow North (Patrick Grady); the Chair of the Select Committee and others. I, too, pay tribute to the charities, organisations, trade unions and individuals who have campaigned tirelessly to ensure that these changes are introduced.
As we have already heard, congratulations in particular go to Marie Curie and the MND Association for their Scrap 6 Months campaign. I also pay tribute to all the individuals impacted by this, their families and carers.
This is a short Bill, but it will have a huge impact on many people’s lives at an incredibly stressful time. It is a privilege to play a part in the process of making people’s final months somewhat easier than they might otherwise have been. We chose not to table any amendments to the Bill even though I would have welcomed the opportunity to explore further some of the issues highlighted on Second Reading. It is imperative that we get the Bill on to the statute book as soon as possible so that people can start to benefit from the amended definition of end of life. As things stand, fast-track access to universal credit and ESA is available for those with 12 months to live, while PIP, DLA and attendance allowance are only available for those deemed to have six months to live. That is understandably causing confusion, and everything must be brought into line as quickly as possible.
I shall end by reiterating two very important points. First, will the Minister consider following the Scottish Government in taking a more open-ended approach, rather than insisting that awards made under the special rules can last for only three years? Will she commit to evaluating the relative effectiveness of the two different approaches in the coming months?
Secondly, I return to my point about seeking reassurances about how the Department will ensure that it has the capacity to maintain a truly fast turnaround time for applications made under the special rules. Will it monitor how many people receive their claims before they die? Will it also evaluate how well information is being filtered down to clinicians and others who need it so that they find the process easy to navigate.
Once again, I thank the Minister and colleagues for their thoughtful contributions. The Bill has our full support.
Drew Hendry
I am also keen for the Bill to make progress as quickly as possible. Our thanks should go to the people who have been campaigning for this change, including the fabulous organisations such as Marie Curie, Macmillan and Citizens Advice; MND and MND Scotland, which have done so much work; and individual campaigners who have told their stories time and again, some at great personal cost.
I praise the probing amendment tabled by my hon. Friend the Member for Glasgow North (Patrick Grady), because it is important that such matters are considered. I hope, from the Minister’s tone today, that she will take away some of the comments that have been made so that lessons can be learned from what has happened to people. Terminally ill people will face increased pressures in the coming months and years, and it is vital that services can be streamlined for them. Ministerial churn should not slow the process in the future and work should be done to ensure that protection.
It has been suggested that the Scottish Government need to do further work. I am certain that the Minister, Ben Macpherson, will be delighted to consider how things can be streamlined further in the interests of fairness and dignity for those people at the heart of the system. I am sure that the Minister will find an open door there.
As I said right at the beginning, this is a welcome step that will help people. It is a victory for the campaigners, so well done to them. They will not stop, and they should not stop, until they get the things they need for the people affected and their families.
Justin Tomlinson
To seek to take advantage of the consensus, as part of the review I appeal to the Minister that, as set out in the Green Paper, the next stage is to extend and review the severe conditions criteria, so that those who sadly have terminal degenerative conditions, but would not necessarily be at that 12-month point, find a much simpler and swifter process to enter in to the various elements of support. That would both be good for the claimant and relieve pressure on a system that has a huge amount of demand on it, which would then speed up the process for others so that it could be faster than the current 16 weeks.
Question put and agreed to.
Bill accordingly read the Third time and passed.
House of Commons Commission
Ordered,
That Deidre Brock be appointed to the House of Commons Commission in place of Pete Wishart in pursuance of section 1(2)(d) of the House of Commons (Administration) Act 1978, as amended. —(Mr Peter Bone.)
Madam Deputy Speaker (Dame Eleanor Laing)
I am just prevaricating for a moment. A point of order would be very helpful.
Patrick Grady (Glasgow North) (Ind)
On a point of order, Madam Deputy Speaker. It is obviously important that hon. Members who have an Adjournment debate, for example, are in the Chamber when they ought to be. However, when business collapses because of the outbreak of consensus that we saw in the House and the determination of hon. Members to ensure that the Social Security (Special Rules for End of Life) Bill [Lords] proceeded as quickly as possible and could get on to the statute book, perhaps it is a little bit surprising. I think we should be grateful to hon. Members that we were able to achieve that consensus. I put on record, as I did not get a chance to, how well the Minister did in responding to my specific amendment, given that she was brand new, and I commend the work of her officials, who have to do that little bit of extra work when amendments come in from Back Benchers. We should be grateful for that consensus, even if it takes a few of us by surprise.
Madam Deputy Speaker
The hon. Gentleman has been most eloquent and helpful to the House in his point of order. It is not really a matter for the Chair, but if I were to express an opinion, it would be that the hon. Member for Liverpool, Riverside (Kim Johnson) owes the hon. Gentleman a double Glenmorangie.
Royal Assent
Tuesday 25th October 2022
(2 years ago)
Lords ChamberRead Full debate Read Hansard Text Amendment Paper: Committee of the whole House Amendments as at 11 October 2022 - (11 Oct 2022)