Hospices and Palliative Care Services
(13 years, 5 months ago)
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Viscount Bridgeman
To ask Her Majesty’s Government what plans they have for the future of hospices and palliative care services.
Viscount Bridgeman
My Lords, I hope that we shall have an hour of singing from the same hymn sheet. I am very grateful for the opportunity to introduce this debate on this most important of subjects. It comes at an important time for the hospice movement in the United Kingdom, for the interim report of the independent funding review has just been released. On 11 November, the noble Baroness, Lady Finlay of Llandaff, led with great distinction a debate on palliative care for cancer sufferers, and this debate, I suggest, is entirely complementary to that one.
I declare an interest as the former chairman of St John’s Hospice in central London. This is one of a number of hospices which cater for the three main killer diseases: cancer, HIV/AIDS and motor neurone.
No debate on palliative care or end-of-life treatment is complete without the mention of Dame Cicely Saunders, who is widely accepted as having founded the hospice movement in the United Kingdom. It is a worthy tribute to her memory that a recent report by the Economist Intelligence Unit puts the United Kingdom first, ahead of 39 other countries, in the provision of end-of-life care, and this was attributed in part to the “well-established hospice movement”.
In the short time available to me, I wish to speak briefly on funding. In the past, there has been a certain complacency on the part of every Government towards the funding of hospices. The unadorned truth is that any Government are well aware that any shortfall will in the end be made up by way of appeals and fund-raising and that, to put it bluntly, it will be all right on the night. On the whole, Governments of all hues have got away with it, although I pay tribute to the previous Administration, who made available £40 million to improve the environment of palliative care. In the case of the hospice with which I was associated, its share was gratefully put to good use in improving out-patient facilities, and the confirmation of this grant by the present Government is to be welcomed.
Up to now, there has been no national tariff for hospices contracted to the NHS. The disadvantages of this are obvious, as it makes it difficult to produce long-term strategic budgets, and inevitably it means that the funding as between different hospices is going to differ significantly. Additional funds invested through the end-of-life care strategy have not been invested in a consistent way. In many cases, hospices are forced to carry an overhead for negotiating staff with the many PCTs to which they are contracted, and they are ill-equipped to afford this. Some of the less well-resourced establishments inevitably lose out. I would mention that a joint report by Healthcare at Home and Dr Foster estimates that delivering end-of-life services in the home could save the NHS £160 million a year.
I am very pleased that the NHS tariff group is reporting on behalf of palliative care. Now we have a real opportunity in the review of commissioning to move towards 100 per cent funding across the board. However, does that mean that fund-raising from the third and voluntary sectors will no longer be required? Most certainly it does not. It will simply mean that that part of a hospice’s expenditure which is clearly clinical will be looked after within the commissioning structure, leaving those involved in fund-raising to concentrate on amenities such as day centres, bereavement counselling and the training of volunteers and carers, which are not part of the NHS’s responsibility.
Before leaving the subject of funding, I wish to mention the particular case of children’s hospices, where currently the contribution to operating costs tends to be at the lower end of the scale, although I am aware that these hospices are likely to receive a greater element of mainstream primary care than their adult counterparts and they also receive Section 64 additional funding. The number of children with life-terminating illnesses is, mercifully, relatively small. Nevertheless, there is a danger that for that very reason the special needs of children's hospices may be overlooked. I hope that that will be recognised in the current review.
As the population ages, so will the burden of care increase. There will be more long-term conditions and, with those conditions, there will inevitably be symptom-control elements, and it is those that palliative care must address. It is fair to say that all the national strategies for older people and those with dementia recognise the role for palliations, and I hope that the department will ensure that that is reflected in the commissioning structures which, I hope, will be the product of the fundamental review.
I turn to community support. Speaking in the debate initiated by the noble Baroness, Lady Finlay, on 11 November, I referred to the totem of the hospice movement being hospital avoidance—and for hospital, you might read, hospital and hospice avoidance. The apparent paradox of all debates on hospices is that we are talking about ways to avoid using the institution itself and moving the emphasis of patient treatment away from acute into community and primary care settings, which, apart from freeing up beds for unavoidable acute cases, has the incalculable benefit of letting patients choose their place of care, and possibly where they will die. In that debate, several noble Lords referred to that. It is important that the primary care trusts—or, as they will now be, GP funding consortia—should record as early as practicable patients’ preferred place of death. My noble friend was very helpful on that point at col. 322 of the Official Report of that debate. However, I should welcome his confirmation that that will become a statutory obligation.
I mention as an example of admirable community support the single point of access project in Westminster. The project delivers a single telephone number for patients to use to access all palliative care services in the borough. It has been made possible only by numerous teams giving up their systems and working together with the out-of-hours GP co-operative to run the system. With the impending amalgamation of services between Westminster, Kensington and Chelsea, and Hammersmith and Fulham, it is to be hoped that that service will be available in all those three boroughs with the minimum of bureaucracy and optimal cost savings, and that that will form a useful pattern for other authorities.
An important component of that scheme is out-of-hours work. That is of concern to all branches of primary care, but it is particularly vital with palliative care, for one simple reason: pain does not keep office hours. I know that the matter of 24-hour cover is already being addressed across the country. Currently, it is piecemeal, with services varying from telephone advice only to personal visits. The palliative care funding review, in its interim report, recommends that the Government use the forthcoming NHS operating and outcome frameworks to ensure that a structured 24-hour service is put in place.
Finally, I say a word about education. This is of course a subject in itself and time does not permit more than a passing reference to it. Palliative care is now included in GP training, but that specialised training needs to extend right across the palliative care community, from qualified doctors to undergraduates and carers—both hospice-trained and from outside. Training is too big a subject to be left to the charitable sector. I hope that the Minister will confirm that it is to be given high formal priority in the commissioning structure.
We in the United Kingdom can take pride in the leadership that we have given to the hospice movement worldwide, achieved through the dedication and commitment of staff, consultants and volunteers. They deserve our gratitude. I end by thanking those noble Lords who have chosen to take part in the debate. I look forward to their contributions and to the reply from my noble friend.
Lord Faulkner of Worcester
My Lords, I congratulate the noble Viscount, Lord Bridgeman, on securing this debate, and I welcome this chance to express my admiration for the wonderful work that is performed by our hospices across the country.
I speak with first-hand experience of two hospices which I have got to know in the City of Worcester in the past year. They are Acorns Children's and St Richard’s Hospices. I found my visits to them both heart-warming and humbling. The most impressive feature of both—apart, of course, from the quality of the care that is provided at them—and this is true of other hospices all over the country, is the commitment of volunteers. Acorns in Worcester, for example, is able to draw on the support of 250 volunteers who cook, clean and do the gardening for them. St Richard’s tells me that it has 900 volunteers who, last year, saved the hospice £765,000 in wages, had they needed to pay people for the jobs they did. Charity shops are of course also a hugely important revenue stream. St Richard’s has more than 350 volunteers in its shops, which can be found across the county selling furniture, electrical items, books, women's and men's clothing and bric-a-brac.
Both hospices benefit greatly from the extraordinary generosity of local philanthropists and other members of the local community. One of the most remarkable people in Worcester is Mr Cecil Duckworth, who is a freeman of the city and a massive donor to Acorns, the building of which was largely down to him and his generosity, and to an 84 year-old lady who lives next door to the hospice and donated the land free of charge.
Mr Duckworth's other great contribution to the City of Worcester is to bring top-class rugby to the city. His Warriors team runs an ambassadors scheme in which three players a week visit the hospice. They were there on the day when I visited. He allows for a constant stream of fundraising events at the Sixways ground, where the Warriors play, such as a fireworks display. The home match on Boxing Day will be given over to raising money for Acorns, and the players will be wearing a shirt designed by their children. St Richard’s will also have 20 volunteers at the game selling raffle tickets for their car draw.
Another great supporter in the city is the mayor, Councillor Mike Layland. Last Tuesday he was pulling pints at a local bar which was donating all the takings over a two and a half hour period to Acorns because that is one of the mayor’s chosen charities.
At present, around a third of the running costs of each hospice is covered by statutory funding, but there is great uncertainty about whether this will continue with the reorganisation of the National Health Service. The replacement of PCT commissioning with GP commissioning is not suitable for many hospices—in Acorns the children are looked after by consultants and not by GPs—and a centralised tariff-based system that produces a minimum of 30 per cent of the hospices’ care costs is needed.
It is very hard to think of a better representative of the big society than the hospice movement. I hope that when he replies the Minister will be able to give some reassurance about future levels of funding.
Lord Alderdice
My Lords, I thank my noble friend Lord Bridgeman for not only securing the debate but for introducing it with his usual elegance and eloquence. I identify myself both with his comments and those of the noble Lord, Lord Faulkner of Worcester, in praising the importance of the hospice movement and its work, the significance and value of voluntarism, and the need for public, financial and other resource support.
In the short time available to me I wish to address one specific issue—the need for thoughtful and real support for the staff who work on the front line in the hospices. Some years ago I became aware of this issue when I was doing a consultancy for the Belfast Hospice. It became apparent to me that there is a specific kind of emotional strain and stress on those who work in the hospice movement on the front line with the patients. With all other forms of care, there is a variegation of patients and the acuteness of their problems. However, in a hospice, when a patient comes in everyone knows that this is moving towards the end and there is an intensity about the emotional involvement that is quite unique.
In addition, the situation moves inevitably to a form of bereavement. Even if the patient moves out of the hospice and comes back in, it is inevitably moving in that direction. As human beings we are created in such a way that we can deal with bereavement and emotional intensity, but what I saw with some of the hospice workers who were working on the front line with patients was a psychological equivalent of march fractures. All the time there was the development of a close emotional bond and then the experience of bereavement—and then straight into the same situation again and again and again. Many of those who experienced this time after time themselves became subject to emotional trauma—sometimes they fell physically ill—after a number of years.
If these workers were able to move out into another aspect of hospice care—education, administration or teaching—or to move into the NHS and bring with them their experience of palliative care, pain relief and dealing with cancer and other terminal illnesses, they would be freed of that emotional involvement and make a tremendous contribution. The burden of my request to my noble friend is that the NHS will engage with the hospice movement to provide opportunities for support and constructive engagement that values the experience of those involved in the hospice movement but ensures that they do not find themselves suffering because of the enormous emotional commitment they made to this peculiarly special and costly form of caring.
Baroness Masham of Ilton
My Lords, the noble Viscount, Lord Bridgeman, who is chairman of the Hospital of St John and St Elizabeth in London, takes a great interest in everything. I visited the hospice attached to that hospital with the All-Party Parliamentary Group on HIV/AIDS some time ago. The hospice does not discriminate—it takes people who have HIV, cancer or some other condition. People can die in a safe place and receive spiritual support from people who understand their conditions.
Some of the children’s hospices now have units for teenagers. This is a very good development because teenagers do not fit in with small children or adults; they need their own space. The hospice at Boston Spa in Yorkshire has such a facility.
I also visited the hospice at Sunderland which is, I am told, the only hospice in the UK that is solely funded by the NHS. I ask the Minister whether, once the GP consortium comes into being, this hospice will still be funded by the NHS. There are dedicated people working in the NHS but, with so many cuts emerging, questions need to be answered to give reassurance to those who feel vulnerable.
Many children with muscular dystrophy need to be able to swim to help their condition. I am told that some of the hospices have swimming pools. Would it not be possible for children with muscular dystrophy to have swimming sessions in these pools when they are not being used? This would benefit both parties in these difficult economic times. It would be good if people could help each other. Would this not be a little bit of the big society?
My husband died in an A&E department after years of complicated medical conditions, including cancer. He developed pneumonia and needed antibiotics through a drip. This was not possible; it was on a Sunday. There is a desperate need for palliative care in the community for those who wish to die at home.
Lord Howard of Lympne
My Lords, it is a pleasure to follow the noble Baroness, Lady Masham, and I join in the congratulations to my noble friend Lord Bridgeman on securing the debate. I declare an interest as chairman of Help the Hospices.
Your Lordships have spoken eloquently and in moving terms of the quite extraordinary work that is done in our hospices. It is true, as my noble friend Lord Bridgeman said, that this is an area of care where we are recognised as providing the best in the world. A number of noble Lords have pointed out that the hospice movement is an outstanding example of the big society. I am pleased to place on record that the Prime Minister has acknowledged that there is no better example of the big society than the hospice movement. I feel immensely privileged to hold the position that I do—although I have held it for only a few weeks—and to be able to contribute in whatever small way I can to this outstanding movement. I described it in the debate of the noble Baroness, Lady Finlay, as the jewel in the crown of our healthcare system, and I believe that to be true.
In the short time available I wish to make three points, although that may prove to be a little ambitious. First, as a number of your Lordships have pointed out, although the debate is concerned with the portion of funding that goes to hospices from the Government—we are asking the Minister for some indication of that today—it is true and will remain true that the greater part of the funding for hospices will come from local and charitable sources. It is therefore at least as important for the future of the hospice movement that everything is done to encourage charitable giving and volunteering. As we have heard—I acknowledge the fact—an enormous amount of the work that is done in hospices is carried out by volunteers.
Secondly, I draw attention to the fact that a number of new providers are entering the field of palliative care. This is a healthy development which may well increase the availability of palliative care and support at the end of life. I hope that the new providers will recognise that local hospices can provide a source of experience, expertise and knowledge for the public, private and voluntary sectors in improving care for people affected by terminal illness.
Lastly, as local councils take on a wider responsibility for health and social care within their communities, it is very important that they should recognise that good-quality palliative care can reduce pressure on expensive acute services and deliver personalised care for people in their own homes. It is essential that the palliative care funding review and the coalition Government’s review of social care funding being led by Andrew Dilnot should work together to develop a comprehensive funding settlement that reflects the nature of the care and support for people affected by terminal illness. I hope that the Minister will be able to respond positively to these points and that the Government will take them on board when they come to implementing the review.
Lord Patel
My Lords, I too am grateful to the noble Viscount, Lord Bridgeman, for calling this debate and I echo his words about children’s hospices. It is on that that I will concentrate my brief remarks.
It is crucial in this debate that we consider palliative care for children as well as adults. There are 20,000 children and young people in the United Kingdom who will die before they reach adulthood. Some of them will die when very young; others will deteriorate slowly over many years. Families caring for these children and young people, often 24 hours a day, seven days a week, can feel under enormous emotional, physical and financial strain. Relationships can suffer, careers may have to be abandoned, siblings who are well can feel left out and normal family activities become almost impossible. Children’s hospices offer a lifeline to these children, young people and their families, helping ordinary people in extraordinary circumstances to cope with the challenges of everyday life. They provide a range of flexible, practical and free support at home or in the hospice to the entire family, often over many years and at any stage of a child’s illness from diagnosis for as long as it is needed.
There are currently 45 children’s hospices in the United Kingdom, 40 of which are in England. They provide flexible comprehensive care at home and in the hospice, help with pain control in children, support for families, end-of-life care and bereavement support. They are all registered charities, receiving very little statutory funding and relying on the generosity of the public. They struggle to get funding from primary care trusts. Only around 9 per cent of their funding comes from PCTs and local authorities. The palliative care funding review is a unique opportunity to put in place long-term funding. Localised GP commissioning will present serious challenges in commissioning children’s palliative care. I hope the Minister will agree that the national commissioning board should be the body responsible for commissioning palliative care for children. The key issue here is adequate funding for children’s hospices, which provide extremely valuable care to children and families and should have statutory funding.
The Earl of Selborne
My Lords, I join others in thanking my noble friend Lord Bridgeman for introducing this debate and giving us the opportunity to talk about the future of hospices and palliative care. Like my noble friend Lord Bridgeman and the noble Baroness, Lady Masham, I make a plea for the cause of palliative care in the community. I declare an interest as a patron of a charity called Hospices At Home TLC, which operates in Hampshire, where I live, West Sussex and Surrey. Developed from the palliative nursing service and funded by the Big Lottery, it provides help for adults with a limited life prognosis and their family and carers.
As my noble friend Lord Bridgeman reminded us, surveys consistently show how many people would prefer to have support at home and to die at home if that is feasible. Of course this requires the relevant level of care in the community to be provided. My noble friend mentioned that the significant figure of £160 million could be saved, but specialist therapies, specialist medical equipment, volunteers working alongside nurses and bereavement counselling are the sort of services which are being provided by charities and the hospice movement.
There are difficulties, some of which arise from the interface with the primary care trusts. Sometimes they are not always aware of their own criteria for qualifying for continuing care in the community. While the gold standards framework aims to improve the organisation and quality of care for everyone in the last years of life, it is often when a patient is placed on the palliative care register that patients and families and carers are not able to understand just what support, and further support as the condition changes, is available within the primary care trust area. I simply make a plea that everyone involved with the primary care trusts not only understands for themselves the criteria for support but makes them accessible in a way that everyone else can understand. We need to move towards a national cover for palliative care services in the community. We are enormously lucky in our area to have just such a cover.
Lord Judd
My Lords, the hospice movement is indeed fortunate to have a champion like the noble Viscount, Lord Bridgeman, with his compassion and detailed knowledge. I declare an interest as president of the West Cumbria Hospice at Home, a pioneer hospice in this kind of care for those who wish to die at home. It is impossible for me to speak too highly of the quality of commitment of its staff, volunteers and trustees. Volunteers provide a compassionate service of a highly professional standard and the sensitive staff are in many ways volunteers, serving well beyond the requirements of their contracts.
Hospices are usually charities with their own supporters from whom they receive the bulk of their funds. This is often an intensely local relationship, with communities feeling real ownership of the organisation. This is well illustrated in west Cumbria, where the local community has taken the hospice to its heart and where there is just such a widespread sense of responsibility for its work. This is well evidenced by the upwards of 1,500 women who each year participate in a midnight six-mile sponsored walk, cheered on even at that late hour by the local community.
Any legislation will have to be tuned to this spirit and recognise that, for example, any pressure to merge could all too easily destroy an ethos which is so essential for success. That is not to say, however, that there should not be encouragement towards collaborative working between neighbouring hospices. There is a risk that some hospice charities might in effect be perceived largely as fundraisers for the NHS. This must be robustly rebutted. Instead hospices should be encouraged to lead in their sphere and should receive absolutely essential financial support by commissioning.
In the NHS White Paper, there is a clear move from focusing on targets to focusing on outcomes and quality. Hospices have always focused in this way. This, of course, requires so-called soft measures where evidence is not always easy to provide. Again, any legislation needs to be considered against a very different background from what is more usual in the NHS. The central role of the GP commissioning consortia envisaged in the White Paper gives hospices a real opportunity to become the preferred provider for these services at the local level. Hospices which are already the main high-quality provider could in many cases, given the necessary support of commissioning, expand the services they provide to become far more comprehensive. This could be by providing more general palliative care services in the local community and by embracing activities not normally currently covered—education, dementia care, care for chronic and end-of-life conditions, as well as the essential and demanding care for the dying.
Finally, I make a plea: we must be wary lest unimaginative bureaucratic reporting requirements, such as detailed statistics and the standards expected in preparing them, at times place a disproportionate burden on the volunteer-dependent charities. This could inadvertently dampen the very spirit which is so essential to a hospice’s success.
Lord Patten
My Lords, I am very happy to follow the noble Lord, Lord Judd, who put his finger with great accuracy on the importance of localism in support for hospice movements, whether in hospitals or hospices in the community—a point also reflected by my noble friend Lord Selborne. That localism underpins much of what my noble friend Lord Bridgeman described in his speech, which was absolutely spot on.
I wish only to address the spiritual aspects of palliative care, whether in home, hospital or hospice. I guess that when in centuries past hospice-like or palliative care was given it was largely the preserve of the religious. Pain relief must have been very difficult in comparison to the spiritual solace that was doubtless always available on tap and in plenty. Today, the reverse may be the case, thanks to the great leaps forward that have been made in pain control and pain management. If it is hard to provide a hard-nosed, cost-benefit analysis of such pain relief, which I think it is, how very much harder it is to do the same for the spiritual solace given to those facing death and their families. But this spiritual dimension is vital.
While I warmly welcome the extra sums that have been found in these hardest of times by the coalition—the £40 million for hospices and the extra money for palliative care for children—as well as the review that is being undertaken, I ask my noble friend Lord Howe whether he will ensure that the needs of the dying who wish to see a representative of the British Humanist Society, an imam, a rabbi or a priest are not forgotten. That very valuable body, the Association of Hospice & Palliative Care Chaplains, does a great deal to spread good practice in the area of palliative care—it must be terribly demanding and emotionally draining work—helping both patients and their families. As more emphasis is put on dying at home, ways to enhance the good work of this network of chaplains and their colleagues in more community-based care must be developed and the spiritual dimension must not be forgotten.
Baroness Finlay of Llandaff
My Lords, in securing this debate, the noble Viscount has exemplified his tireless work for hospices and is to be congratulated. Hospices’ futures depend on stable funding. The service exists to help people to live as well as possible until their natural death and to support their family, including children.
The report of the Palliative Care Funding Review, which was chaired by Tom Hughes-Hallett from Marie Curie, has drawn heavily on the Welsh model. I declare with a certain pride an interest as the chief architect of that model. We realised that every patient with complex end-of-life-care needs, wherever they are and whatever their diagnosis, should have access to specialist palliative care advice and support to underpin general services in primary and secondary care, irrespective of the bed that they are in, be it at home, in hospital or in a nursing home. We realised also that there will always be some who need to be in specialist hospice beds because they have complex needs. However, the ad hoc way in which hospices have grown up means that some areas have good provision while others remain devoid of it.
We wanted fairness of access for patients, so we developed a funding formula. We calculated that there needs to be one hospice bed or a hospice-at-home virtual bed per 15,000 of population. My rough calculation for England suggests that the numbers are pretty good but poorly distributed. We stipulated the minimum number of specialist staff needed for community palliative teams to oversee hospice beds and for different hospital support teams. This indicated the core service that the NHS should fund, irrespective of provider. If charitable funding dried up, there would still be a core service in every area.
We instigated seven-day working by specialist nurses, costing around £10,000 per team—that was all—with 24/7 on-call consultants to advise any healthcare professional across Wales by telephone or even visit if necessary. In hospitals, these nurses, visiting the wards and sometimes going to A&E, have facilitated discharge to home, and patients have not needed to be admitted. They have also set up home care, so that when the patient gets home everybody is expecting them.
Every dying person with complex needs should know that specialist help is available if needed. Our national standard is that every referral must be responded to within 48 hours. Fortunately, almost all are seen on the same day or next day; a distressed dying patient cannot wait. Direct patient and family feedback provides dynamic quality assessment, while service data inform performance monitoring.
Three years on, we are convinced that per-patient payments will be an accounting nightmare. The complexity is too wide-ranging. Patients need a rapid response and true choice over place of care and hospices need funding stability. End-of-life care cannot be left just to voluntary donation; its commissioning must be a core duty of budget holders.
Lord Cavendish of Furness
My Lords, with her formidable experience and knowledge, it is always humbling to follow the noble Baroness, Lady Finlay. I join other noble Lords in thanking most warmly the noble Viscount, Lord Bridgeman, for introducing this debate so ably.
I have to declare an interest: some 20 years ago, I helped to found St Mary’s Hospice in Ulverston in Cumbria. It is at the other end of Cumbria from the noble Lord, Lord Judd; Cumbria is enormous. I retain a connection, although I retired as chairman last year.
I should like to make two points. As I understand it, the independent report on end-of-life care by Thomas Hughes-Hallett has made an interim recommendation to the Government to the effect that hospice-at-home services should be the chief beneficiaries of whatever money may be available in future. I do not quarrel with that, nor do I want to second-guess the final report. However, I register two caveats. First, a significant minority of terminally ill patients want to die in a hospice or at least do not want to die at home. The other caveat is that a hospice building has uses beyond that of being where people are cared for as they approach death. It is a point of contact for members of the local community and provides a venue for day care, which is very important, bereavement counselling and much else besides. Perhaps most important of all, it has become the hub of expertise, especially where a hospice such as ours develops a speciality. In my case, because of the high incidence of mesothelioma in Barrow-in-Furness, which is the tragic legacy of asbestos in the shipbuilding industry, St Mary’s has become something of an international leader in this field. Hospices innovate, as does palliative care in general. It would be dangerous to ignore the strength that an institution derives from having a physical core, albeit modest, which provides the springboard for training and innovation.
The second point is that I believe that the hospice movement has stumbled on a formula that could be far more widely applied. With very little modification, it could do very much more in the fields of heart disease and end-stage respiratory illness. It could relieve much fear and distress among patients suffering from these complaints. It would also remove significant financial burdens from the NHS. The non-cancer element of hospice care averages, I think, only 10 per cent; at St Mary’s we have a slightly larger percentage and my contention is that nationally it should be significantly higher still.
The ratio of funding between the state and our own fundraising efforts results in our having to find rather more than 70 per cent of what we spend. The reason why we were able throughout my time to raise such prodigious sums in a not very well-off area was that we successfully persuaded local people that the hospice belonged to them. In effect, the state meets the clinical costs—about 30 per cent—and we find the rest. This means that our care is essentially needs-led. I agree with my noble friend Lord Patten that, in this rabidly secular age, spiritual support has an important place and is much needed. This model, with its built-in synergy between public and private providers, can and should in my view form the basis on which new and enduring partnerships can build. It is indeed, as has been said, the big society at its best.
The Lord Bishop of Guildford
My Lords, the hospice movement and the burgeoning of palliative care and research are indeed developments in which we lead the world, as the noble Viscount, Lord Bridgeman, said.
I declare an interest as a member of the council of King’s College London. This year the Princess Royal opened the Cicely Saunders Institute of Palliative Care at King’s College Hospital. This is the culmination of 15 years’ work at King’s and was funded through the Cicely Saunders International charity, the Wolfson Foundation and other charities. It is the first palliative care unit in the world, as far as I am aware, where patient care, teaching and research are all conducted under one roof.
As a Bishop I also speak—and other Bishops could say the same—of hospices in my diocese: Woking, Sam Beare, the Princess Alice in Esher, the Phyllis Tuckwell in Farnham and the CHASE Children’s Hospice in Guildford. Hospices, as noble Lords have already said tonight, are wonderful places. They are places of peace and joy, more profound than trivial bonhomie. I think of a little girl, Tamsin, singing “Away in a Manger” two Christmases ago, only a few days before she died.
I do not need to rehearse the Christian inspiration for the hospice movement and the concomitant development of palliative care through pioneers such as Dame Cicely. It may be worth noting, however, that one recent development in our excellent hospices is the significant increase in palliative care offered in the home. The noble Baroness, Lady Masham, and the noble Lord, Lord Howard, alluded to this. There are now more out-patients being cared for through our hospices than before. A good death and quality of life well before death, with loving care and the alleviation of pain, can be and are being provided extensively within the homes of patients. It should be, wherever possible, extended, although I accept the caveat of the noble Lord, Lord Cavendish, as to the appropriateness for some who prefer to be in the hospice itself.
The availability of palliative care is, as we all know, subject to the lottery of the postcode. I therefore warmly welcome the interim report and look forward to the final report next year on how dedicated palliative care can be funded so as to be available to all. The interim report, which we look forward to and which was trailed by the noble Viscount, is looking at a national funding system locally delivered.
The content of palliative care is defined in holistic terms, including psychological, social and, indeed, spiritual care—I am grateful for the contribution of the noble Lord, Lord Patten, on that. The signs from the interim report are therefore good and far-reaching. The question for the future after the definitive report in the summer will be implementation. As TS Eliot put it:
“Life you may evade, but Death you shall not”.
There can be a good death and that should be available to all.
Baroness Thornton
My Lords, I congratulate the noble Viscount, Lord Bridgeman, on securing this short but important debate, which has had many very pertinent contributions. The goal of palliative care is to prevent and relieve suffering and improve quality of life for people with serious and complex illnesses. End-of-life care affects all of us; it is everybody’s business and, as such, must be a central focus of any health, social care and housing reform agenda.
Much of the recent progress in end-of-life care was enabled by its inclusion as one of only eight high-level priorities in the NHS Next Stage Review, which the previous Government brought forward. Indeed, we made end-of-life care a priority; we made a commitment to it and, significantly, we increased funding to hospices. The key challenge facing the Government now is to ensure that end-of-life care continues to be one of the top few high-level organisational priorities at each stage of the forthcoming reforms. The proposals in the White Paper published this summer did not reflect the importance of end-of-life care sufficiently to guard against it being subsumed by other higher profile priorities. That is not just my opinion; it is also the opinion of the Palliative Care Association.
I have glanced at the results of the consultation published today and have yet to find the words “end-of-life strategy”. It may be in the operation strategy document, which is my weekend reading. I echo my noble friend Lord Faulkner in his concern about how the new GP commissioning will deliver palliative care. I suspect that many organisations that have campaigned for end-of-life care so successfully in recent years will be concerned about what comes next. Diluting recognition of end-of-life care as a discrete, high-level priority risks undermining the progress made, and I suggest devalues end-of-life care as a government priority. I should be grateful for the Minister’s comments on this and his reassurance. Surely, if the Government intend to drive cultural change in the NHS, as they say they do, it is essential that they reflect the whole journey of a person’s care throughout their life to their death and into bereavement care for their family and friends. The Minister needs to address some serious worries and concerns raised during this debate.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I begin by thanking my noble friend for tabling this Question for debate and introducing the subject so ably. I very much recognise the considerable knowledge that he brings to this subject, not least as a result of his past chairmanship of St John’s Hospice in London.
Thanks to the dedicated work of hospices, many people do die well: where they choose, with the people they love, and with all the medical, psychological and spiritual care they need. The Government are committed to supporting the work of hospices. We have confirmed the £40 million hospice capital grant for 2010-11, allocated under the end-of-life care strategy, supporting 123 projects in 116 hospices. More generally, we are determined that care should be compassionate and appropriate and that it should support personal choice. We will do that by putting patients, their families and carers at the heart of everything we do.
The end-of-life care strategy aims to improve care for all adults approaching the end of their lives, whatever their diagnosis and wherever they are, including enabling more people to be cared for and to die at home if they so wish. However, while many people receive excellent care, others do not. There are still variations in people’s experience by region, by age and, as my noble friend Lord Cavendish, pointed out, by disease, with greater emphasis given to people with certain conditions, particularly cancer. We can and must do better. We are taking forward a number of initiatives to improve end-of-life care services for everyone.
The issue of funding was introduced by many noble Lords, not least the noble Lord, Lord Faulkner of Worcester. I agree with much of what he said. End-of-life care needs a long-term system of sustainable funding. We committed, in the coalition agreement, to a per-patient funding model for palliative care. I listened with care to what the noble Baroness, Lady Finlay, said in that connection and I am grateful to her for the points that she made. My right honourable friend the Secretary of State for Health has asked Tom Hughes-Hallett, chief executive of Marie Curie Cancer Care, to chair an independent review of palliative care funding. I am sure that he will wish to take account of the experience and expertise of the noble Baroness in this area.
The review, covering services for both adults and children, is looking at options to make sure that the funding of hospices and other palliative care providers is fair. It will make recommendations for a funding system that will cover care provided by the NHS, a hospice or any appropriate provider, which encourages more community-based care so people can remain in their own homes, if they wish. It will be fair and transparent to all organisations involved in end-of-life care. The review is making good progress and I know that many in the hospice movement including, as my noble friend Lord Howard will be pleased to know, Help the Hospices, have provided evidence to inform its work.
The review’s interim report, published on 3 December, sets out a definition of dedicated palliative care and initial thoughts on a national funding system, stressing the importance of 24/7 community services. I look forward to receiving the final report and its detailed recommendations for funding in the summer. Of course, the funding review comes with a caveat that it has to be affordable within the constraints of the current financial climate.
Beyond sustainable funding, we need to consider how we will deliver end-of-life services. The NHS operating framework, published today, emphasises the importance of implementing the end of life care strategy and of developing round-the-clock, community-based services. The best services already know that good end-of-life care is not only more effective, but can be less expensive than poor care. A recent National Audit Office report found that in a typical PCT, around 40 per cent of the people who died in hospital had no medical need to be there. They could have been cared for at home or in their care home if the community-based support had been in place to support them and their family or carers.
We want services that enable people to have more control over the care they receive when they are dying. As one way of achieving this, our intention is for people to be able to add their end-of-life care plans to their own summary care record. We need to develop the services that allow people to die in a place and in a manner of their choosing. I recognise that this is not easy. Nor can it be done overnight. There is a great deal of work to do. In 2013 therefore, we shall review our progress and see how close we are to giving people the control that they clearly wish for.
We need more imagination, more radicalism, more courage in commissioning. We need to shift the landscape of end-of-life care in favour of the service user. The best commissioners are already challenging old conventions, finding new ways of designing services, and new ways of bringing hospices and other community organisations together to meet patients’ needs. Soon, new GP consortia will commission services. GP-led commissioning has clear advantages over the current model for end-of-life care. GPs have a better understanding of patient needs and better connections within the local community. They know what is available locally to support patients at the end of their lives. I firmly believe GP consortia will be advocates of hospices, not their enemy. But hospices themselves should be proactive. They should talk with their local GPs. They should also talk with their local authorities, which will play an increasingly important role in co-ordinating care, as we move toward joint-commissioning and planning through health and well-being boards.
My noble friend Lord Bridgeman dwelt with some emphasis on funding. The Department of Health is providing £286 million of additional funding to support implementation of the end-of-life care strategy over the two years 2009-11. A huge amount of money is being spent on end-of-life and palliative care. We know that it is often not used as it should be. That is why the palliative care funding review is looking at how we can better deploy the resources that we currently provide.
My noble friend Lord Bridgeman and others were right to highlight the particular issues surrounding palliative care for children. The Coalition: Our Programme for Government, states that the Government will provide,
“£10 million a year beyond 2011 from within the budget of the Department of Health to support children’s hospices in their vital work”.
As I have already mentioned, the children’s palliative care services are being specifically considered by the palliative care funding review.
My noble friend Lord Bridgeman also asked me about 24/7 community services. The end-of-life care strategy encourages commissioners and providers to develop 24/7 community-based services for medical, nursing and personal care which people need to enable this to happen. The funding review has already highlighted the importance of treating 24/7 community services as a priority.
The noble Lord, Lord Faulkner, asked about future funding. I have already referred to our intention to introduce a per-patient funding system. More generally, the strategy makes clear the responsibilities of the NHS to ensure adequate support for hospices, including through stronger commissioning and adhering to the principles of the compact code of good practice. That should mean more funding stability, including longer-term contracts, for hospices. My noble friend Lord Howard referred, quite rightly, to the cost-effectiveness of palliative care. The new health and well-being boards will follow on from the current commissioning arrangements that are already directed at end-of-life care because improving quality and improving productivity are, effectively, the same things.
The noble Lord, Lord Patel, asked me about commissioning in the future and the noble Baroness, Lady Thornton, questioned the Government’s commitment in this area. The NHS commissioning board will determine how best to deliver high-quality services, including end-of-life care, by working with GP commissioning consortia and making use of the various tools and levers it will have available. The board will commission NICE to develop quality standards to define the quality of care necessary to deliver the desired outcomes and use those standards to produce a commissioning outcomes framework. That framework will then be used to hold GP consortia to account. NICE has already begun the process to develop an end-of-life quality standard and we look forward to seeing the fruits of that work.
My noble friend Lord Bridgeman asked about the extent to which choice will be embedded in the system. We recognise how important it is to give people choice over the care that they get when they are dying and the place in which they receive that care but, as I have mentioned, we also recognise that it is not an easy task and cannot be done overnight. We need to do a lot of work and, as I have mentioned, we will be reviewing progress in 2013 so as to be sure of what we are capable of committing ourselves to on the issue of choice.
My noble friends Lord Patten and Lord Cavendish and the right reverend Prelate stressed the importance of spiritual care. The end-of-life strategy recognised that each person has spiritual, religious or emotional needs and that spiritual care is an important, integral part of the care given to people at the end of their life and to their carers and families. The department has produced a set of quality markers for end-of-life care and in the strategy’s second annual report, published in August, we said that we would consult on the effectiveness of the quality markers and revise them. Those will include spiritual care and consultation will begin in the new year.
My noble friend Lord Bridgeman referred to the importance of training and education. The department has taken forward a number of initiatives to develop the workforce, including: the development of core competences and principles; publishing an e-learning package on end-of-life care, which is free to access for health and social care staff, and supporting communication skills so there is a lot going on in this area.
To conclude, my noble friend Lord Cavendish referred to hospices as places where patients receive the best kind of care and I would not wish to disagree with him. Having said that, surveys consistently show that up to 75 per cent of people would prefer to die at home but at present only about 20 per cent do so, with a further 17 per cent dying in a care home. It is about choice; however, I take note of the powerful points that he made. Lest any noble Lord should think otherwise, the Government remain committed to delivering good- quality end-of-life and palliative care services and we believe that the action we are taking will improve the quality and range of options available to those in England at the end of their lives, including the many who receive such excellent care from hospices.