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Hospice Care

Volume 522: debated on Wednesday 2 February 2011

Motion made, and Question proposed, That this House do now adjourn.—(Mr Goodwill.)

It is a pleasure to have secured this debate on palliative care and the hospice movement, particularly at a time when the coalition Government are taking the Health and Social Care Bill through the House. It is a great opportunity to talk about this important area of medicine and care, particularly because I do not think that it is always given as much attention as it deserves.

Palliative and hospice care is something that all Members are aware of, because we all have constituents who are suffering with terminal or progressive illness and we all want them to die with the most dignity that can be provided, in the most comfortable and supportive surroundings, and we all want to ensure that their families are looked after holistically. That is why hospices are so valuable to all of us and to all our constituents.

Notably, the previous Government and the new coalition Government have paid a lot of attention to cancer care, but the hospice movement is about not just cancer but a raft of progressive and terminal illnesses, such as heart disease, lung disease, chronic obstructive pulmonary disease and motor neurone disease. The movement is not just for older people, either; it looks after younger people and, indeed, children with terminal illnesses.

I am grateful to my hon. Friend for securing this important Adjournment debate. Last Friday I visited the Chestnut Tree House children’s hospice, which serves my constituents and those throughout Sussex, and its concern is that hospice at home and section 64 funding should not be lost in the health reforms. Does he agree that that is important?

My hon. Friend is absolutely right. He talks about a children’s hospice, but hospice care, and the valuable service that it provides to people with terminal and progressive illnesses, is particularly pertinent to adults. It is also important to children, however, because there is nothing more distressing than a very sick child whom we know is going to die.

I shall explain why we need to invest in hospices and palliative care. The UK population is ageing significantly, and we will have to look after a lot more people with more than one terminal and progressive illness. By 2033, the number of people aged 85 and over is projected to more than double to 3.3 million, and it is predicted that 8.7 million people will be 75 years or older. There is an ever-increasing strain on the palliative services that help to support people with co-morbidities, or several illnesses, and we need to recognise that and invest properly in those services. It is often through the hospice movement that such people are properly looked after and their families properly supported during the terminal illness.

Hospice charities have many concerns, because in the past the top level of government paid insufficient attention to the role that hospices play in easing the burden on the NHS, as well as in providing a vital service for local communities. We are of course in a time of economic belt-tightening, but given the Government’s investment in the big society, there is a unique case for supporting hospices and the valuable services that they provide, alongside their role as a provider of NHS services and a key provider of support for families in the community.

On the point about invaluable support services, does my hon. Friend agree that hospices, such as Children’s Hospice South West, which aims to build a new hospice in Cornwall to add to those it has in Devon, offer vital support to families through respite care for the children whom they look after who, sadly, have terminal illnesses?

My hon. Friend is absolutely right, and I am delighted to hear that a new hospice is emerging in her part of the country. I am sure that it will provide a valuable service. I shall focus most of my comments on the provision of adult care, but she is absolutely right to talk about children’s hospices, because a sick child—especially one with a terminal illness—needs a lot of support and care, as do their families in particular, during their illness. I am delighted that the communities in her part of the world are investing in that service.

I shall now discuss the hospice movement’s background, because it teases out the key areas of support that hospices provide. We all probably know that St Christopher’s hospice in Penge, south London, is likely to be identified as the first modern hospice, and I am delighted that in my constituency we have a hospice, St Elizabeth’s hospice, which provides a key service, supporting most of central and eastern Suffolk. St Elizabeth hospice delivers a number of services. It has 18 in-patient beds, some of which are for respite care, to which my hon. Friend the Member for Truro and Falmouth (Sarah Newton) alluded. These provide care to give families time off when dealing with a relative who has a terminal illness, and look after people in the very last days of their life.

However, hospices do more than that. One thing that is often forgotten when we talk about the hospice movement is the very valuable outreach service that they provide to their communities. People will want to have as good a death as possible, and part of that is about supporting them in being able to die, where possible, in their own homes in as comfortable an environment as possible. What St Elizabeth hospice does very well, as do many others, is invest in those outreach services to ensure that people can die comfortably at home.

It was my privilege to spend 12 years of my life working in the hospice movement, particularly on the fundraising side, in adults’ and in children’s hospices. My hon. Friend raises the very important point that there is an ongoing national review of palliative care. Does he agree that it is very important that that takes account of the full range of services that hospices offer, whether for children or for adults, because it is that range of services that the families and the patients value so dearly in the hospice movement?

I am grateful to my hon. Friend for contributing to the debate given his experience. He is absolutely right. In end-of-life care, different solutions work for different families, and the whole point is to ensure that people and their families are supported in the way that suits them. Some people may choose to die in the comfortable surroundings of a hospice; many may want to be cared for and looked after in their own homes. I am sure that as part of the review we will see a greater understanding of that, and particularly of what is provided in the vital outreach services looking after people in their own homes.

My hon. Friend is also right to raise the issue of funding for hospices. St Elizabeth hospice and St Christopher’s hospice receive only about a third of their income from the NHS or primary care trusts; the other two thirds are raised directly through able volunteers and their charity activities. The national end-of-life care strategy published in 2008 was rightly accompanied by the provision of £286 million over two years to be spent to support the operation of hospices. I have to say that there were concerns about how that money was being spent. It is right that a review of hospice and palliative care is being carried out under the new Government. In a recent debate in the Lords, the Parliamentary Under-Secretary, Earl Howe, said:

“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.”—[Official Report, House of Lords, 15 December 2010; Vol. 723, c. 694.]

The palliative care funding review aims to address that issue by identifying a per patient funding model for adult and child palliative care services across health and social care. An interim report was to be published in December that looked particularly at supporting the role of the outreach services in palliative care. That is a very good thing. The per patient tariff is obviously a complex issue involving how much it would cost to look after somebody at home and how much it would cost to look after them in the hospice setting. How, in the Minister’s view, will the per patient tariff apply at this stage to looking after people at home as opposed to in the hospice? Does he think that some allowance will be made for the additional cost, particularly in rural areas, of looking after people with terminal illnesses at home as part of an outreach service?

There is a great need throughout hospitals and throughout the hospice movement to have more specialist palliative care services. GPs and PCTs tend to associate those services only with cancer, and at the moment they generally tend to be accessed by people with cancer. I hope that one thing that may come out of the palliative care review—perhaps the Minister can comment on this—is a greater move towards Department of Health support, through the dying days of PCTs, for a greater emphasis on hospices being able to reach out to people with other illnesses such as motor neurone disease, heart disease, chronic obstructive pulmonary disease and other terminal illnesses, so that we ensure that GPs and local health care providers are more in tune with that. Hospices want to do that and I am sure that the families of patients with those terminal illnesses would receive great support and benefit from such care.

Hospices, and indeed the sector, face a number of challenges. I will raise two. First, as I have suggested, there is a need to improve relationships between hospices and primary care trusts. A good thing that I think will happen as a result of the Government’s health care reforms is that when local GPs, who understand the needs of the local communities, are in charge of health care, they will forge better relationships with hospices, and in particular their outreach services, than there are at the moment. Far too often in talking to hospices over the past two or three weeks I have found that they do not feel that there is a proper corridor or dialogue with primary care trusts. I hope that the Minister will agree that the Government’s health care reforms will better recognise the valuable roles that hospices play in local communities.

Secondly and importantly, hospices often operate under a great burden of red tape, because they fall between a number of stools. They are involved with the Charity Commission because of their charitable role, the Care Quality Commission, Monitor, local authorities, the NHS commissioning board, and possibly other public health regulators. Meeting all those requirements places a great financial burden on hospices, perhaps more so than for other NHS providers or charities that have more discrete accountability. That needs to change. Given that they are charities and organisations that do not have a great deal of public funding, their having to answer to and be accountable to so many bodies through their administration is counter-productive and draws money away from patients. I would be grateful if the Minister outlined how the Government can reduce the administrative burden so that more of the money that hospices have goes to patients, rather than being wasted on administration and bureaucracy.

To conclude, there are a number of areas to applaud. The Government policy is GP-led and there will be locally sourced knowledge, which will much better recognise the needs of local hospices. The per patient funding will be patient-centric, which can only be a good thing. The health care reforms will provide greater transparency in the delivery of funding. Of course, that all ties in with the big society.

I am grateful to the House for having this debate. I have asked a few questions and am sure that the Minister will answer them. I want hospices to have a viable and strong future in which they have more support from public bodies, but are set free from the administrative burden that holds them back and prevents them from spending money on patients. I look forward to the Minister’s response.

I congratulate my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter) on securing this debate and on laying out the issues so clearly. We must draw attention regularly and repeatedly to the contribution that hospices make to our society. As he rightly said, they are in the vanguard of the big society. He was right to paint the picture of the factors that drive us to focus on the role of hospices, such as the demographic pressures that he described.

My hon. Friend talked with eloquence about the difference that St Elizabeth hospice makes to his constituency and his constituents. I join him in paying a warm tribute to that hospice and to the others that have been mentioned. Recently, I have had the privilege of visiting my local hospice, St Raphael’s, and St Ann’s hospice in Cheadle Hulme. I share his and other hon. Members’ admiration for the tremendous care and compassion that is provided by staff in those places.

We want to ensure that these institutions grow and flourish as part of a more personalised approach to end-of-life care. How can we do that? First, we need to get the funding right to ensure that hospices can plan for the future with confidence. Secondly, we need to be much clearer about the role that hospices can potentially play in end-of-life care, and have that role recognised in the commissioning and shaping of local services. Thirdly, we need to establish end-of-life care as a clear priority for improvement across the NHS, using levers such as the outcomes framework, the operating framework and the forthcoming quality standard.

I know that my hon. Friend the Member for Central Suffolk and North Ipswich and others have concerns about funding. He will know from his recent visit that St Elizabeth hospice has recently undertaken a refurbishment programme. It had to raise a lot of money to pay for that work, but I am pleased to be able to say that part of the cost was funded from a £40 million capital grant scheme that we are making available this financial year. One of the coalition Government’s first actions was to confirm that funding, as an early indication of our commitment to hospice care. Well over a hundred hospices, such as St Elizabeth, are receiving funding from that grant to help them improve their facilities.

My hon. Friend will know that that is part of a much larger sum that we have made available to support the end-of-life care strategy for adults. In the current financial year, £198 million was made available to help improve the quality and range of services for people in the final stages of life. That was an indicative amount set by the previous Government, and there have been doubts, expressed not least by the Public Accounts Committee, about whether the new money for the implementation of the strategy was being used for its intended purpose. The big question is how to ensure that the funding gets through.

Some argue, although the argument has not been advanced tonight, that ring-fencing is the answer. I actually believe that it would be likely to be a retrograde step. It would give the NHS less flexibility, less discretion and less scope to meet local people’s needs at precisely the time when we need the NHS to have a more personalised approach. Ring-fencing can act as a cap rather than a guarantee, putting an artificial ceiling on the amount that an area can spend on end-of-life care rather than encouraging that amount to be commensurate with need.

Ongoing and increasing funding for end-of-life care will be part of the baseline for primary care trusts, and for the GP consortia that replace them. However, the local NHS will get freedom and responsibility in choosing how it spends the taxpayers’ resources committed to health care. That is the key refreshing change that the Government’s reforms will bring about. In return, we expect much greater transparency and accountability for the decisions that are made.

By monitoring how the new end-of-life care funding has been spent, we are doing what we can to shed light on PCTs’ decisions and on the variations in spending that occur. Last year, for instance, just 20% of the money going to PCTs was allocated to hospices. We are repeating the monitoring process for this year and conducting a survey of total PCT expenditure on specialist palliative care, including that provided by hospices. Together, that will give a clearer picture than ever of how different parts of the NHS make use of local hospices in delivering care. That is an essential component of the picture that we need to build to ensure that good commissioning takes place.

End-of-life care will also be given greater visibility in performance structures in the NHS. We have already published the NHS operating framework for the coming year, 2011-12, which emphasises the need for greater choice in end-of-life care. That care also figures prominently in the outcomes framework for the NHS, which will ensure that commissioners and providers give the matter priority. In fact, last month we published a set of performance indicators to work alongside the outcomes framework. For end-of-life care, PCTs are currently planning against the indicator measuring the percentage of deaths that take place in someone’s usual place of residence—their own home or their care home. That will provide a real incentive, real traction and a real opportunity for hospices and other providers to work with commissioners to improve outcomes.

Finally, as I have mentioned, the quality standard that the National Institute for Health and Clinical Excellence is working on will give clinicians, hospices and health managers a clear and shared idea of what best practice looks like. NICE tells me that it expects the standard to be published by November this year.

Naomi House children’s hospice in my constituency is a fantastically run hospice that raises an enormous amount of money to continue its hospice-at-home service, which recently restarted. It receives about 12% of its direct care costs from the Department of Health, but was told a couple of years ago that that would come to an end this year, and it is not having much luck in securing ongoing funding from the primary care trust, NHS Hampshire. What advice would the Minister give to that hospice for the interim period before GP consortia in west Hampshire are up and running?

Hospices need to continue to work to demonstrate the huge benefits of their provision to commissioners. If the hon. Gentleman writes to me, I will pay close attention to what is happening in that regard.

My hon. Friend the Member for Central Suffolk and North Ipswich rightly mentioned the difference that GP consortia will make. GPs are the best people to bring together the provision that I have talked about, along with the new local health and wellbeing boards. The advent of GP consortia will change the relationship—quite fundamentally, and in the right way—between hospices and GPs. It will make it natural for doctors to talk to each other and solve problems together, and to draw on different sources of support to help patients get what they need. It is encouraging to note that three of the GP pathfinders—Westminster, Bristol and Somerset—are specifically looking at how they can improve end-of-life care under the new arrangements. That is a sign of GPs’ interest in such care, and the potential for GP-led commissioning to bring about change and to address that challenge.

There is a new opportunity for collaboration and innovation, but hospices must not sit back—they must actively engage. We need them to be proactive in understanding and engaging with the new systems and structures as they settle into place over the next two years. They need to be proactive in talking with their local GPs and building up the relationships and mutual connections that will be essential to how the system works, and proactive in working with local authorities, which will play an increasingly important role in shaping and integrating care through the health and wellbeing boards. Ensuring that health and social care are commissioned and planned together is critical in the delivery of good end-of-life care.

Hospices also need to be proactive in broadening their horizons and innovating to support a wider range of people. As my hon. Friend rightly said, hospices are not just about cancer. We want people to be able to die in their own homes, where they would choose to be, and we need a more flexible and dynamic approach from both the NHS and hospices in that regard.

As my hon. Friend rightly pointed out—this is a key point—contrary to popular perception, only a small number of people actually die in a hospice. A great many more people benefit from their work in other ways. People could, for instance, receive day therapy in a hospice, or, as is the case with the local hospice in my constituency, they can get help from hospice staff working in the community, which was referred to by a number of hon. Members. Children’s hospices, meanwhile, could get more involved in the long-term treatment of children rather than just end-of-life care.

We need to innovate in those partnerships. We need commissioners to make imaginative use of hospices as part of their end-of-life, palliative care plans. Hospices must also have the ambition to explore new ways of offering their skills and services to NHS commissioners. My hon. Friend is right that we need to reach out beyond cancer services—it is essential that services diversify. St Christopher’s in London, which he mentioned, is doing excellent work with people with dementia who need end-of-life care. We need to focus much more on that to deliver the national dementia strategy.

I want more hospices to play a role in supporting people with other degenerative conditions—not just dementia, but conditions of the sort my hon. Friend rightly highlighted. We make that point explicitly in the national dementia strategy, as I said, and we want to reinforce it through the end-of-life care strategy.

The levers and the incentives are in place to enable hospices to secure NHS funding in the years ahead. But in the longer term we know that a new funding model is needed. We made it clear in the coalition agreement that we want to introduce a per-patient funding system that is built around a much clearer understanding of what level of care should be available through the NHS and that is fairer and more sustainable for all providers, including hospices, because it moves us away from the vagaries of grants—we have just heard about the problems those cause to the children’s hospice in the constituency of my hon. Friend the Member for Winchester (Mr Brine)—and gives them certainty of a set level of funding per person.

The debate about this subject has been going on for some time and is well developed. I encourage hon. Members who have spoken to contribute to that work. In July, the Secretary of State for Health appointed Tom Hughes-Hallett, the chief executive of Marie Curie Cancer Care, to chair an independent review covering both adult and children’s services. That review will look at the issues raised in this debate to ensure that we have services that reach out beyond the confines of the hospice and address the wider cost issues in rural communities. An interim report was published at the end of last year, which sets out a definition of dedicated palliative care and provides initial thoughts on how a new national funding system could be built.

Will the review take account of not only the similarities between children’s and adult’s hospices, but the differences? Respite care is a fundamental part of the care that children’s hospices provide.

I can give my hon. Friend that undertaking. Understanding of and sensitivity to those differences will be reflected in how the review is put together. I will also ensure that this debate is brought to the attention of those doing this work.

Hospices play a strong and distinguished part in our communities. We absolutely want them to have a bright future. Yes, there will be challenges, not least because the financial environment will affect hospices just as it will affect other parts of the health system, and I can understand the concern that that creates. But through the operating framework for the NHS, the funding review and the wider improvements that we are making in terms of GP-led commissioning, we are creating the right conditions for a vibrant hospice movement for the future. That will mean that institutions like the ones my hon. Friend the Member for Central Suffolk and North Ipswich mentioned can continue to make a significant and valued contribution in the years ahead.

Question put and agreed to.

House adjourned.