Hospices: Funding

Question for Short Debate

Asked by

To ask His Majesty’s Government whether they plan to review how the state funds hospices.

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.

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.

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.

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?

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.

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.

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%.

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.