(4 weeks ago)
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Lord Farmer
To ask His Majesty’s Government whether they plan to review how the state funds hospices.
Lord Farmer (Con)
My Lords, I thank all noble Lords contributing to this important and timely debate. Hospice care, which of course includes hospice-at-home care, began 60 years ago and is one of the UK’s greatest achievements. The first voluntary hospice in 1967 paved the way for the modern hospice movement, which spread across the UK and around the world. This movement has profoundly, and I hope permanently, changed how people are treated when they have an incurable condition.
Dame Cicely Saunders’s hands-on medical experience taught her the need for a dedicated place where end-of-life care could be provided. She pioneered and oversaw St Christopher’s Hospice in London where, I believe, my noble friend Lord McColl, the eminent surgeon and professor, who is in his seat today, also practised.
Voluntary sector beginnings are still very much in evidence, with many good partnerships between charities and the NHS alleviating much pressure on the latter and giving freedom to the former. A review of funding would find a highly variable model for hospices; some are run by the NHS, with large annual charitable grants from local friends of the hospice, and others are run by a charity that gets some funding from the NHS. A common hallmark is a holistic, bespoke and patient-centred approach that values their relationships.
Dame Cicely said:
“You matter because you are you, and you matter to the last moment of your life. We will do all that we can not only to help you die peacefully, but also to live until you die”.
We should not forget that all receiving hospice care are on the edge of eternity, and dying peacefully also requires spiritual palliative care.
Why do people matter until the last moment of their lives, and why should we spend scarce resources to help them live until they die? It comes down to human dignity, a word that occurs five times in the United Nations Declaration on Human Rights and refers to the special value of human beings. However, the way it is used needs to be teased apart as it can be deployed to argue both for and against hastening death. Logically, hastening death cannot mean the same thing as helping a sufferer live until they die. The American medical ethicist Daniel Sulmasy identified three different basic meanings of dignity. For time and simplicity, I will focus on the two that can end up being used antithetically to each other in debates over whether end-of-life care should focus on hospice care or assisted dying. Many will say, “But it’s not either/or” and I will come to that. Sulmasy describes intrinsic dignity as the worth or value that a person has by virtue of being human. It is the basis of human rights, equal across all people and, as he says,
“does not admit of degrees”.
Attributed dignity, on the other hand, is a value that we confer on others or ourselves and very much admits of degrees. People can have varying amounts of it, as it depends on the esteem in which they are held in their or other people’s eyes. Importantly, attributed dignity would not have any ethical basis or exist at all without its root in intrinsic dignity.
When those who support assisted dying argue that dependence, loss of control and their self-perception of being a burden diminish that sufferer’s dignity, they are referring to attributed dignity. Opponents of assisted dying do not downplay that threatened loss of attributed dignity but give primacy to a sufferer’s intrinsic dignity. They uphold the moral obligation to bolster their humanity to the utmost, regardless of double incontinence, uncontrolled dribbling and the like. They reduce as much as possible the suffering, but not the sufferer.
Assisted suicide and euthanasia turn a somebody into a nobody. Those who morally justify eliminating a human on the grounds of concern about their attributed dignity undermine the foundation of human rights—namely, respect for the intrinsic dignity and worth of human beings. This is the basis for palliative care and why hospices were set up in the first place. The philosophy of palliative and hospice care over 60 years rests on a sound and logical understanding of the relationship between attributed and intrinsic dignity. It is precisely because the dying’s sense of self-worth and significance can be so ruthlessly challenged when the end of life draws near that their intrinsic dignity needs to be just as, if not even more, ruthlessly reinforced.
Hospice and palliative care professionals’ central concern is to improve, sustain or slow down the loss of quality in a dying person’s life, and that quality is multi-dimensional. When they sense that they are experiencing unconditional love, perhaps for the first time in their lives, that quality might be priceless despite severe pain. In 2023, however, Quebec passed provincial law mandating that medical assistance in dying be available in all hospices. Not only is this one of many measures that bulldozed medics’ conscientious objections, but it is a warning that, down the line, hospices could lose any state funding that they receive if they are not willing to evolve into a completely different service.
Given the financial pressures on the hospice movement, and of course the wider NHS—I am sure that many speakers will articulate that very clearly—we really could be looking at a brave new world where choice for ordinary people to end their own lives today becomes necessity for them tomorrow. Poorer people and those from ethnic minorities already have far less access to hospices than wealthy celebrities and other elites. Yet, if these elites change the law, they will still have choices but might inadvertently narrow them down even further for the less well-off, if hospices and other palliative care begin to wither on the vine. This has happened in jurisdictions such as Canada that have introduced and widened access to assisted dying.
Earlier this year, a report by the All-Party Parliamentary Group on Hospice and End of Life Care found that many hospices and the essential support they provide to dying people, their families and the wider health system are already in funding famine. The Health and Care Act 2022 legally requires integrated care boards—ICBs—to commission sufficient palliative and end-of life care for their population. However, the report found that the funding that hospices receive from ICBs still varies significantly across the country, and hospices describe it as “stubbornly insufficient” and “flat”, while costs rise. Where hospices had seen a change in their funding following the change in law, this had been for the worse, with some reporting a deterioration in funding from commissioners.
Notwithstanding the high value that many hospices place on the independence that flows from being mainly or partly charitably funded, will the Minister explain what her Government will do to ensure that ICBs uphold the Health and Care Act in this important regard? Further, what progress are they making to implement recommendations of the APPG report, particularly the development of
“a national plan to ensure the right funding flows to hospices”,
requiring a review of the state’s own role and responsibilities?
I will finish with an observation from a hospice matron with 20 years’ experience in end-of-life care. She has found that a decision about how someone wants their life to end taken when they were still well, or not too ill, can change when faced with the nearness of death. Paradoxically, the human spirit, she says, often wants to fight on. At present, and most thankfully, hospices facilitate that choice to fight. Will this Government commit to sustaining that choice, and improving how it is delivered, as long as it is within their power to do so?
Baroness Pitkeathley (Lab)
My Lords, I am grateful to the noble Lord, Lord Farmer, for securing this debate and for his excellent speech reminding us of the philosophical basis of hospices. My remarks are focused more on the practical.
In the past six months, I have visited two friends who were in hospices as their lives came to an end. Both were being cared for in the way we would all like in similar circumstances—with skill and compassion and with support for them and their families. However, in both cases the hospices were operating only at half-pace. Each had 50% of its beds unoccupied for lack of money. It was also a source of regret to the staff that they had not only had to close beds but to curtail the outreach services which are so vital to patients and their families—proof, if any were needed, of the crisis in funding faced by hospices. Emergency funding is needed now to supplement the extraordinary fundraising effort volunteers and support groups put in, but this is a short-term solution. In no other area of health would we tolerate such dependence on charitable activity.
Hospices need to be incorporated into the NHS and dying needs to be seen as as much a part of life as being born. This does not negate in any way the voluntary principle on which hospices were founded—I had the privilege of meeting Dame Cicely Saunders and talking to her in the early days of the movement—but builds on it, harnessing that support and good will and enabling anyone who is need of a hospice place, or indeed hospice services in their own home, to access them. I hope that the assisted dying debate, as it proceeds, will highlight the need for more and better palliative care. Of course, hospices are not the only places providing such care, but many of them have expertise and experience from which the whole of the NHS could learn, and I hope that this learning will be encouraged by the Government. That expertise goes beyond the specialist medical care to manage pain and other symptoms over the short stays or those of longer duration with which we are familiar. It also includes research and innovation to improve palliative care services wherever they are provided.
We should not forget hospices’ important links with their local community, for which they are famed. They mobilise volunteers and voluntary efforts so that local communities are familiar with their services and able to access them, for the benefit of patients and their families when their own time comes. Many a bereaved person has been helped to recover from their grief by, in turn, becoming interested and involved in volunteering at a hospice—a two-way street, indeed.
Baroness Finlay of Llandaff (CB)
My Lords, I am grateful to the noble Lord, Lord Farmer, and I declare all my interests in relation to hospices and palliative care, especially in Wales.
In 2008, the Welsh Government Health Minister Edwina Hart commissioned a strategy for palliative care. That report recommended that there must be fair access to specialist palliative care as a core service, available at all times, wherever the patient is, with patient information. I had the privilege of being asked to lead this work, and I had a budget of just over £2 per head of population. Together with my colleague, Dr Andy Fowell—who, tragically, died recently in a cycling accident—we created a funding formula to plug gaps and move specialist medical staff on to NHS contracts to ensure that they could integrate with oncology, surgery, anaesthesia, emergency departments, and so on. We stipulated a minimum number of actual or virtual beds for a population, and minimum staffing levels of specialist care in the community and in-hospital support teams. We set quality standards for rapid response to referrals, stimulated research and ensured education and training. I pay tribute to my colleague Dr Robert Twycross, who died just a few days ago. He was at Oxford and he was one of the great pioneers in research and education. The strategy has driven patient-centred care that meets the needs of every person and their family, especially when children are facing bereavement.
With encouragement, my wonderful colleagues moved on to seven-day pooled rotas to cover nights, weekends and bank holidays. As a colleague said, “We got rid of frantic Fridays and mad Mondays”. Our specialist nurses realised how many crises at nights and weekends could be intercepted when working a weekend or a bank holiday. Work with pharmacists and paramedics is improving access to just-in-case medication and care. For many years, through the Marie Curie Hospice, we have run a 24-hour all-Wales helpline for any health or care professional to get advice on a difficult situation.
In Wales, we created a floor—a minimum—but, of course, it is not enough and we still have workforce gaps, although Welsh Ministers have been unfailingly supportive of hospices and palliative care teams in Wales, despite competing demands, financing that becomes difficult and provision that is especially hard in remote and rural areas.
Research has repeatedly shown that good care costs less than bad care. No one should be told that there is nothing more that can be done. Seeking help and advice from colleagues, and being humble enough to questioningly review a situation, can find solutions to make each day better, accepting the inevitability of death for us all. Will the Government look at the Welsh data to comprehensively review the whole model of such services in England, to ensure that people’s needs are better met and hospices can once again flourish?
The Lord Bishop of London
My Lords, I too thank the noble Lord, Lord Farmer, for introducing this debate. I declare my interests as outlined in register, particularly that I am patron of Hospiscare in Exeter.
I suspect there has never been a more important moment in time to discuss the funding of the hospice sector, which is facing extreme challenges. It is also important to remember that hospices deliver excellent care to a significant number of people who are dying well. However, according to Hospice UK, the sector is facing the worst financial crisis in more than 20 years.
The state provides on average only a third of hospice funding. A large proportion is found by fundraising. Those who live in affluent areas are more likely to financially support their hospices than those in deprived areas. That will have a direct impact on not only access but quality of care to those in the deprived areas.
It also entrenches the worsening inequalities in health, as highlighted by the noble Lord, Lord Farmer, not just between regions but also within them. In addition, the funding given to ICBs for palliative and end-of-life care is highly variable, and sometimes disproportionate for the demographics of their population. In the absence of any long-term plan, I echo the request of the noble Lord, Lord Farmer, and ask the Minister what support the Government are giving to ICBs as they make their commissioning decisions in this area.
As already indicated by the contributions made, noble Lords are aware of the introduction of the Private Member’s Bill in the other place which seeks to change the law for those who are terminally ill. How can we consider this if we do not give enough funding to hospices, palliative care and palliative care research, so that people dying receive the best care—the care that they need to make life worth living and, in the words of Dame Cicely Saunders, to live life until they die?
I hope that we are not prioritising the care of those who need it based on their contribution to our economy. This is contrary to how God values each one of us, contrary to the principles on which the NHS is founded, and contrary to human dignity. How the Government choose to prioritise palliative care matters very much. I look forward to hearing from the Minister about the Government’s plan to secure a sustainable future for hospices, palliative care and palliative care research.
Lord Howard of Lympne (Con)
My Lords, I too congratulate my noble friend Lord Farmer on securing this debate. It is a pleasure to follow the right reverend Prelate, whose close association with and support for the hospice in Devon I know of and is widely appreciated. I declare my interest as listed in the register as vice-president of Hospice UK, which I had the privilege of chairing for eight years.
The dire situation—the crisis—in which so many hospices find themselves today has been described by others during this short debate, coupled with the need for an immediate infusion of money to ease their plight. There is a crisis now, and more money is needed now. However, encouraged by the recent admission of the Secretary of State, in the context of the debate on assisted dying, that palliative care in our country is inadequate, I want to make a proposal which has the potential to transform this regrettable state of affairs. I start with some uncontroversial propositions. Most hospitals, which see their role as being the curing of patients, are not very good at palliative care. Far too many people die in hospital; they do not want to die in hospital, and they need not die in hospital. They would have a far better death if they were in a hospice, or at home cared for by a hospice.
When I was chair of Hospice UK, we worked up a detailed plan which involved identifying those patients in hospital who were unlikely to be cured and arranging for them to be discharged to a hospice or to their home, where they could be looked after by a hospice. We estimated that up to 50,000 people a year could be helped in this way: helped to have the end-of-life care they deserve and the dignified death to which we all aspire. It would, of course, need an infusion of resource from the NHS, but it would save the NHS much more than it would cost. It costs much less to look after someone in a hospice than it does in a hospital, and it would free up all those hospital beds; it would be a real win-win.
I gather that the implementation of the plan was scuppered by the pandemic, but that Hospice UK is considering working it up again and putting it to the Department of Health. I urge it to do so, and I urge the Secretary of State, now that he has recognised the problem, to grab this proposal with both hands; it would make a real difference.
Lord Monks (Lab)
My Lords, I too am grateful to the noble Lord, Lord Farmer, for allowing us to shine a light on our hospices. They deserve all the help we can give them in return for all the help they give us and our families.
My son, Daniel, died earlier this year under the palliative care of the doyenne of British hospices, St Christopher’s, which has already been mentioned by the noble Lord, Lord Farmer. I told Daniel’s story in the current edition of the House magazine and in a note to all Members of Parliament. Daniel also features in an award-winning ITV documentary, “A Time to Die”—as does the noble Baroness, Lady Finlay—which most people regard as very fair. St Christopher’s created a wonderful atmosphere of warmth, compassion and love at a very difficult time, and my family and friends and I will long cherish it. Daniel quipped near the end of his life, “I am being looked after better now than I ever was when I was ill”. That was not a knock at the local hospital—for the reasons the noble Lord, Lord Howard, gave, hospitals are so hard pressed—but hospices have a standard of care that few hospitals can match.
Many hospices are, like hospitals, under acute financial stress and desperately need more help, and I hope that the Minister is listening carefully to our plea. We all know that there are many demands on the public purse and that the Government face, like the female blackbird, many hungry mouths clamouring to be fed, but every effort should be made to stop hospices falling down the long list of health priorities. Regardless of our views on assisted dying—an issue we will probably come to early next year—we must make the end-of-life experience as good as it can be, and hospices do just that.
Baroness Berridge (Con)
My Lords, I thank my noble friend Lord Farmer for securing this debate and the noble Lord, Lord Monks, for sharing his story so well.
How many times do noble Lords hear guests of the Palace of Westminster being told that no one can die here as it is a royal palace; people always legally die across the river at St Thomas’ Hospital. However, if you live in, or in the vicinity of, the Palace of Westminster and need end-of-life care, you are more likely than not to receive it from my local hospice, Royal Trinity Hospice in Clapham. The NHS contributes only 25% to 30% of its funding per year, but over half the people needing end-of-life care in the catchment area of south-west and central London use Royal Trinity Hospice. What is clearly an NHS service should be properly funded by the taxpayer. Whether in the vicinity of a palace or in social housing in the most deprived area of the country, there should be a national minimum standard of provision, as outlined in the excellent APPG report on hospice funding.
I also agree that ICBs should be made to look at a multiyear contractual term, as I often wonder how much charitable time, energy and money are spent bidding for money from the ICB. We know that the demographics show that there will be an increase in demand for hospice care over the coming years, so the sector should be free to plan to deliver more, not to fill in more bidding forms.
I am sure that no one would want the hospice movement to be solely government funded, as vital flexibilities and community relationships are built due to the inclusion of the charitable model of funding, raising about £1 billion a year. In fact, this is the perfect time to have this debate, as we are days away from the Budget. Although it focuses mainly on tax and spend, it is also normally the place where changes are outlined to any of the benefits for charitable giving. Legacies are a large proportion of hospice charitable funding, including around £2 million a year for Royal Trinity Hospice in Clapham. Many of these people will already be payers of inheritance tax, and if you leave 10% or more of the net value of your estate to charity, you can reduce the rate you pay from 40% to 36%.
Why are there not the same benefits for other estates that are smaller and that do not pay inheritance tax, and for whom the gift is often a greater sacrifice? If the policy is to look at income, capital and wealth on a more equal level, why is there no gift aid on small legacies? Also, why do you get more tax allowance if you are a higher-rate taxpayer and claim gift aid, but no benefit if you are a standard-rate taxpayer? I know the Minister cannot give detailed answers to those questions, but I hope she will agree with this focus: that if there is more wealth to tax, surely, we should also incentivise people further to give that wealth away.
Lord Sentamu (CB)
My Lords, I too am grateful to the noble Lord, Lord Farmer, for securing this debate. I have experienced the amazing work and care offered to many people at the end of their lives. I have been patron of and fundraiser for St Leonard’s Hospice in York, and as Archbishop of York I supported in numerous ways Martin House Children’s Hospice, founded by the Archdeacon of York, the Venerable Richard Seed, supported by the generosity of thousands of people who raised the money.
Aisha, the mother of our two foster children, George and Davina, died of breast cancer and was superbly cared for by St Christopher’s Hospice. My mother, Ruth, spent three weeks in Royal Trinity Hospice, where she lost her battle against throat cancer. Her peaceful death inspired our little children.
Hospices are homes providing the best end-of-life care. As charities, they depend on constant fundraising and people’s generosity. The question of the noble Lord, Lord Farmer, invites His Majesty’s Government to put hospices on a sure income footing and foundation. I invite His Majesty’s Government to apply to the funding of hospices the lesson of the RA Butler 1944 Education Act, which was replicated in Scotland in 1945 and in Northern Ireland in 1947. It repealed all previous education legislation, belatedly raised the school leaving age to 15 and made secondary education free and universal. The terms “voluntary aided” and “voluntary controlled” appeared in the Butler Act. Before this was enacted, the voluntary schools provided by churches were largely funded from the income of historic trusts or from the giving of the parishioners. In voluntary-aided schools, the church is responsible for only 10% of the cost of the upkeep of the building; the rest is provided for by the state.
Could His Majesty Government reimagine the funding of hospices in a similar way to the funding of voluntary-aided schools, not the voluntary-controlled schools, which are entirely funded by the state? Hospices need not be funded entirely by the state. A mixed funding model could work well, provided that government remains the last person standing in terms of funding. Hospices could become voluntary-aided hospices.
Lord Balfe (Con)
My Lords, I echo yet again the thanks to the noble Lord, Lord Farmer, for initiating the debate and for the very thoughtful speech with which he introduced it. I declare an interest as the joint chair of the All-Party Group on Together for Short Lives, which is a charity devoted particularly to babies that are born with what are seen as incurable diseases. If a baby is born in that situation, it is a great shock to the parents because they are not generally expecting it, and when the baby is born there is a huge traumatic effect. We are to have a debate on assisted dying, but we have noticed that for little babies there is already assisted dying, because the consultants can ask for medicines to be withdrawn. From time to time, there are very sad court cases where hospitals go to court to get permission to withdraw medicine against the wishes of the parents. I would like that to be looked at more thoroughly in terms of whether we have even yet got it right. We got some minor changes under the last Government together with my friend and colleague, the noble Baroness, Lady Finlay, but there is still a lot to be done in this area.
In so far as the funding of hospices goes, I would like the Government to look at the system outlined in Wales and see whether we can get some sort of agreement on a system and a way of going forward in this country. The fact of the matter is that the charitable raising of funds for hospices is a popular way of raising money—we have one in our area that is well subscribed to—because people like giving, but we must not let everything rest on charity. The points made by my noble friend Lord Farmer about dignity, including intrinsic dignity, and ethics were extremely important; I hope that they will be borne in mind.
Finally, I ask the Government to have a look at the way in which integrated care boards disburse their funding because the variety in disbursement is greater than should be acceptable, even in a partially devolved system.
Lord Griffiths of Burry Port (Lab)
My Lords, there has truly been a depositum of wisdom in this short debate, illustrating an area of concern that we all share in and indicating a degree of urgency by which we should all be impressed. I offer the noble Lord, Lord Farmer, my true thanks for his opening remarks and daring to set up this debate in a philosophical way; he has given us a framework within which we can test our ideas out.
My noble friend Lady Pitkeathley reminded us of the practical applications of good hospice care and the plight of hospices at this present moment. In a sense, I have less to contribute to a debate such as this than the experts who have already spoken, except that I do come across hospices. My noble friend and I have, I think, visited the same people—Members of this House—in hospices.
I am shocked to see from the briefings that we are in this situation of financial difficulty in an area of life where the good being done is so obvious that it is hard to understand why people do not back it. In the charitable sector, endless efforts go on in little shops, on the streets and so on, but what about the one-third and two-thirds?
Similarly, the supreme irony of the fact that we are soon to debate assisted dying—I make no comments about that debate now; there will be time for that—is that it is being put forward as wanting to offer options to people at the end of their lives. Hospice care is an option at the end of people’s lives. It is tried and tested, with proven in-person experience from the offering of one testimony after another. Is it not ironic that we cannot see the two together? We must stiffen our resolve, influence all we can and stand up for investing in hospices as a responsible way of dealing with people at the end of their lives. We must then let the other debate happen, with that already a commitment on our part.
Lord McColl of Dulwich (Con)
My Lords, I, too, thank my noble friend Lord Farmer for initiating this important debate. For most of my professional life, I have been associated with hospices such as St Christopher’s, the Mildmay in the East End of London, the Mildmay in Uganda and the Phyllis Tuckwell Hospice in Surrey. I have learned a lot working in these places.
I remember, for instance, a lady of 28 with an inoperable cancer of the throat. She was in pain and a lot of respiratory distress and needed relief from these symptoms. I explained to her that I could put a needle into her vein and titrate her with analgesics until all her symptoms had gone. She agreed to this. I gave her a surprisingly large dose of heroin, which not only did not kill her but relieved all her symptoms and gave her three weeks of symptom-free life. During that time, she was able with a clear mind to say goodbye to her friends and to tidy up all those loose ends. Some people accused me of hypocrisy, saying, “You’re really killing them and just saying that you’re relieving their pain”. Well, anyone who thinks they know what is in my mind has delusions of grandeur.
Cicely Saunders and I were contemporaries as medical students. Her work on relieving symptoms in hospices was very important indeed. She established without any doubt that the right way was to keep a constant level of analgesia in the blood rather than give patients doses only when they had the pain. If you do this, you require less of the analgesics overall and so the patients are more awake and able to enjoy life. That was a very important contribution. The present laws against euthanasia and assisted dying are like a huge dam preventing great enthusiasm for euthanasia and assisted dying. That dam can sometimes develop a crack for those who want to legalise euthanasia. Once you have a little crack in the dam, the whole thing can give way. Cicely Saunders’s work was an extremely important aspect of this.
As far as the funding of hospices is concerned—
Baroness Wheeler (Lab)
Can the noble Lord wind up, please? His three minutes are over.
Lord McColl of Dulwich (Con)
There is an urgent need for more funding, as has been said many times, and a partnership between government, charities and local authorities is required.
Lord Scriven (LD)
My Lords, I thank the noble Lord, Lord Farmer, for instigating a vital, enriching and at times personal debate about the outstanding work, compassion and care that the hospice movement provides and the perilous state of the funding platform that it sits on. Wonderful examples of hospice and palliative care within the sector have been given. I add my thanks to the staff and volunteers who provide the services, including those at the wonderful St Luke’s hospice in Sheffield, a place where warmth, compassion and outstanding care are given to those at the end of life and the loved ones around them. Indeed, it is a microcosm of the hospice sector. In the last few years, it has been
“‘routinely’ budgeting for annual deficits”,
to quote its chief executive. The ICB funding accounts for just 26% of its £12 million annual budget. The examples of St Luke’s and others outlined in this debate show that unless short and medium-term action is taken by government on funding for hospices, services in some areas will be in serious decline or could collapse.
I say to the Minister that two things could happen, possibly in the short term, regardless of the budget. The first is that when NHS pay increases are made, they should be automatically applied to the in-year contracting values that the hospices receive, so that those extra costs can be absorbed without having to cut services. The other issue is that there should be parity of funding per person who uses a hospice and palliative care, regardless of the setting. It should be an equal base, whether it is in the independent hospice sector or in an NHS setting.
In the medium term, we need to introduce a fair funding deal for hospices and to include palliative and end-of-life care services in the priorities and planning guidance for the NHS. Will the Minister look at that and ask NHS England to implement it?
Investing in hospice care not only enhances quality of life for people who are receiving the care but supports families during incredibly challenging times. To ensure equitable access to comprehensive palliative and hospice care, we must ensure that the Government adopt fair and equitable funding for all who provide services.
The Earl of Effingham (Con)
My Lords, I thank my noble friend Lord Farmer for balloting this QSD.
As we have heard, the modern hospice movement was pioneered by Dame Cicely Saunders at St Christopher’s Hospice, who told her patients:
“You matter because you are you. You matter to the last moment of your life and we will do all we can to help you die peacefully, but also to live until you die”.
Every year, hospices in the UK assist nearly a quarter of a million people who live with a progressive or terminal illness and then support them more closely as their lives draw to a close. We must support these hospices.
Let me share some concerning statistics with your Lordships. More than two in five deaths occur in hospital, with 41% of that group dying alone. While it is impossible to quantify the monetary value of giving people the opportunity to die with dignity, hospices can play an incredibly important role in both providing excellent end-of-life care and, at the same time, freeing up expensive hospital beds in a material saving for the NHS.
The Minister for Care repeated just this month that the Government are determined to shift more healthcare out of hospitals and into the community, including to hospices. However, currently the amount spent on children’s hospice care, for example, varies widely—from £28 per child in South Yorkshire last year to £511 per child in Norfolk and Waveney. Can the Minister explain how these disparities are occurring and how she will address them?
Last year we committed to extending the £25 million children’s hospice grant. However, in a response to a Written Question on 31 July, the Government stated that they
“are currently considering the future of this important funding stream beyond 2024/25”.
Can the Minister please give us a cast-iron assurance that this vital funding stream will be carried forward?
Currently, around a third of hospice income comes from the state and the rest is made up from charitable donations and fundraising. Do the Government intend to move to a model in which the state delivers the majority of funding for hospices? If so, will the Government seek greater control of hospice provision across the country? With increased government funding, Ministers may seek corresponding increases in control over services, so can the Minister confirm that the Government will protect the independence of our hospices, which they value so greatly?
Investing in co-ordinated community palliative care services such as hospices, to reduce unnecessary hospital admissions and provide superlative end-of-life care, should be a top priority for this Government.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am grateful for the thoughtful and constructive approach that noble Lords have taken to this important issue and for a number of considered proposals, which I will share with my colleague, Minister Stephen Kinnock, who is responsible as the Minister for Care. I know he will be interested.
I congratulate the noble Lord, Lord Farmer, not just on securing this debate but on the way he set out his thoughts, which enabled the debate to be so constructive and sensitive to the issues at hand. I share the thanks given by a number of noble Lords, and take this opportunity to thank all those working or volunteering—as my noble friend Lady Pitkeathley highlighted—in the palliative and end-of-life care sector, including in hospices, for the invaluable support, care and compassion that they provide to people and their loved ones when they need it most.
Like the noble Earl, Lord Effingham, and other noble Lords, I pay tribute to the contribution of Dame Cicely Saunders. She was indeed—and can be regarded very much as—a pioneer. Many people in this Chamber and outside have also played their part, and I thank them too.
Approximately 600,000 people die each year in the UK and that figure is set to increase as we have an ever-ageing population. That will mean an increase in the number of people who need palliative and end-of-life care. As we have heard today, palliative care can help in the hardest of times. It is care that makes a real difference. It can make something that seems quite unbearable a bit more bearable. It can give dignity. I was very interested to hear the noble Lord, Lord Farmer, state his definition of dignity. For me, dignity is crucial at all times and never more so than at the end of one’s life. It also makes it more manageable for not just the person being cared for but their loved ones too.
As a Government, we want a society where every person receives high-quality, compassionate care, from diagnosis through to the end of life. While the majority of palliative and end-of-life care is provided by NHS staff and services, we recognise the vital part played by voluntary sector organisations. Many noble Lords know that it is difficult to quantify how much palliative and end-of-life care is being provided at national or local integrated care board level, because care is provided across multiple settings, including in primary care, community care and hospitals, as well as in hospices. It is delivered by a wide range of specialist and generalist health and care workers, who provide care for a wide range of needs. These include, but are not always exclusive to, palliative care.
I recognise that there are more than 200 charitable hospices supporting more than 300,000 people in the UK with life-limiting conditions every year. As noble Lords have observed, most hospices are charitable, independent organisations that receive some statutory funding for providing NHS services. On the point about funding, in England integrated care boards are responsible for commissioning palliative and end-of-life care services to meet the reasonable needs of their local populations. On the point raised by the noble Lord, Lord Farmer, and other noble Lords, ICBs are responsible to NHS England, which has published statutory guidance on palliative and end-of-life care to support commissioners with this duty. It includes specific reference to ensuring that there is sufficient provision of specialist palliative care services and hospice beds, and future sustainability.
The noble and right reverend Lord, Lord Sentamu, the right reverend Prelate the Bishop of London and the noble Lord, Lord Farmer, raised the issue of variation by ICB area. It is important to note that this is in part—I emphasise “in part”—dependent on what is already available in terms of services, along with local needs. Noble Lords will recall the Health and Care Act 2022, which was a key moment. I remember the noble Baroness, Lady Finlay, being very involved in getting palliative care services added to the list of services an ICB must commission in response to the needs of its local population.
In addition to the guidance and service specifications, NHS England has commissioned the development of a care dashboard. The relevance of that is that it brings together all the relevant local data into one place and it will help commissioners to understand the needs of their local population and give them the ability to filter the available information—for example, by deprivation or ethnicity. That is meant to enable ICBs to put plans in place to track and address the improvement in health inequalities.
I will refer to the highly sensitive area of assisted dying, which was raised by the noble Lords, Lord Farmer and Lord McColl, and other noble Lords. I reconfirm to your Lordships’ House that, if the will of Parliament is that the law on assisting dying should change, this Government will work to ensure that it is implemented in the way that Parliament intended and is legally effective. I add that, irrespective of whether the law changes on this matter, we will and must continue to work towards providing high-quality, compassionate palliative and end-of-life care for every person who needs it.
I shall briefly look to the future and say to my noble friend Lady Pitkeathley, who raised the matter of research, that through the National Institute for Health and Care Research the department is investing £3 million in a new policy research unit in palliative and end-of-life care. The unit was launched at the beginning of this year and it will build evidence in this area. To respond to the right reverend Prelate the Bishop of London, it will have a specific focus on inequalities, which I very much welcome.
Noble Lords will be aware that this Government have committed to developing a 10-year plan to deliver an NHS that is fit for the future. We will be considering a whole range of policies, including those that impact people with palliative and end-of-life care needs. I say to the noble Lord, Lord Howard, that one of the three shifts that the plan will deliver is around the Government’s determination to shift more healthcare out of hospitals and into the community. The noble Lord referred to a plan by Hospice UK and said it was looking to update it. We will certainly be pleased to hear from Hospice UK on that matter. Palliative and end-of-life care services, including hospices, will play a very big part in that shift from hospitals to the community.
I turn to some of the additional points that noble Lords have made. I say to the noble Baroness, Lady Finlay, who has made such a big contribution in this area, and the noble Lord, Lord Balfe, who has been a strong advocate, particularly in respect of children’s hospices, that we will indeed be delighted to look at the Welsh experience. Just this week I had a meeting with the Welsh Minister, so I will be following up on that.
The noble Lord, Lord Farmer, asked whether there will be a move to implement the recommendations in the APPG report that would ensure that funding flows to hospices. As I have said, we are determined to move more towards community healthcare and we will certainly work with hospice providers to understand their views as part of this work.
I am sure that we were all very moved to hear my noble friend Lord Monks share his experience of the sad loss of his son Daniel; my sincere condolences to my noble friend and to his family and friends. I heard what he and so many other noble Lords had to say about the quality of care received in hospices, and I too will pay tribute.
I will of course take up the points made by the noble Baroness, Lady Berridge, on gift aid with my colleagues in the Treasury.
I say to the noble Lord, Lord Balfe, and to other noble Lords that my colleague the Minister of State for Care has recently had meetings with NHS England to look at a way forward in the whole area of providing services. I know that he also met the noble Lord, Lord Balfe. We are particularly anxious to reduce inequalities and the work going forward will look at that.
I will review the debate and if there are particular questions that I have not answered, I will of course do so. I will also address the comments and suggestions made by the noble Lord, Lord Scriven. I thank all noble Lords, and particularly the noble Lord, Lord Farmer, for leading us in this debate.