Hospice Care

Stuart Andrew Excerpts

Wednesday 2nd February 2011 Commons Chamber

[Dr Poulter]

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.

[Stuart Andrew (Pudsey) (Con)]

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?

[Dr Poulter]

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.

--- Later in debate ---

[Paul Burstow]

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.

[Stuart Andrew]

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.

[Paul Burstow]

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.

HIV

Stuart Andrew Excerpts

Wednesday 1st December 2010 Westminster Hall

[Stuart Andrew (Pudsey) (Con)]

May I say what a pleasure it is to serve under your chairmanship, Mr Leigh? I congratulate the hon. Member for Inverclyde (David Cairns). I am rather reassured that, after seven years, he does not know how these debates are chosen, because I certainly do not have a clue after seven months.

This is a significant day. It is a day to remember those who are no longer with us; it is a day to acknowledge and pay tribute to those who have worked so hard on this issue; and, crucially, it is a day to raise awareness. On the first of those issues, the scars on those who have lost people, particularly in the early years, are clearly raw. Thankfully, I do not know anybody who has died from AIDS, but I have friends who do, and they recall the pain and suffering vividly.

It is important that we remember those who have died and acknowledge their suffering. There is a wonderful quote in the film “Philadelphia”, where someone says that social death precedes physical death. That was certainly true in the early days, but I hope that things will get a lot better as time goes on. It is important, however, to look at how far we have come.

This is also a day to acknowledge those who have done so much. I pay tribute to each and every person and organisation for their work. There are too many organisations to mention, but I would like to pay tribute to the National AIDS Trust and the Terrence Higgins Trust. I would also like to mention two individuals. The first is the chief executive of the Terrence Higgins Trust, Sir Nick Partridge, who is here. He has done a tremendous amount of work over the years, and he should be acknowledged. The second is Lord Fowler, and I was pleased last night when he was acknowledged for the work that he did in the very early years.

Perhaps most importantly, today gives us an opportunity to raise awareness of HIV and AIDS here and abroad. I know that we are concentrating on the UK today, but I hope that we will have an opportunity to talk about the issues abroad, because they are significant.

The latest figures from the Health Protection Agency show that more people than ever are living with HIV. Last year, there were more than 6,000 new diagnoses, which is fewer than the year before, but only slightly. That emphasises that this is still a major problem. As many Members have mentioned, statistics also show that slightly more than half of new diagnoses are among heterosexuals, but the rate of infection in the gay community is still very high. Worryingly, there is an increase in diagnoses among those over 50, as my hon. Friend the Member for Mid Derbyshire (Pauline Latham) rightly said. We have also heard about the quarter of people with HIV who are undiagnosed. That is a huge problem, which really needs addressing.

I represent a constituency in Leeds, where the prevalence of HIV cases is average for England, with about 850 people receiving treatment and care in the city. Again, however, many of those people have been diagnosed very late, which highlights the need for early diagnosis. We also have a growing African population in the city, and there is a real link between HIV abroad and in the UK, as more and more people move around the world. In addition, we have one of the most vibrant gay scenes in Yorkshire, and I hope that we can encourage as much focus as possible on those two groups, because prevention really is the key.

It is important to mention the campaigns of the 1980s. The Conservative Government of the mid-1980s faced a massive challenge on an emerging issue, and even the best experts were learning day to day. Those campaigns were scary. I was at school at the time, but I remember them, and they still have an impact on me. As the hon. Gentleman said, those old campaigns were not exactly targeted, but they were highly effective.

Developments in medicine these days mean that people with HIV can expect to live well into old age. This generation could be forgiven for thinking that the problem has gone away, and that is a big problem, particularly in the young, at-risk groups. In the 1980s, HIV had already taken root among gay men in this country. Meanwhile, a devastating HIV/AIDS epidemic was about to take off in Africa, with inevitable consequences for this country and others. It is now estimated that, by 2012, there could be close to 100,000 people with the virus in this country. That is a tenfold increase on the 1980s figures, so the problem has not gone away.

I pay tribute to groups such as CHAPs, which have worked with community groups all over the country, and I am lucky that we have such groups in my constituency. [Interruption.] I notice, however, that I need to get a move on, so I will get rid of some of the pages of my speech.

Let me quickly say that I am delighted that we are highlighting some of the work that has been done over the past few years, although I should emphasise that work still needs to be done to save lives. There needs to be foreign aid, education and greater testing. Let me also say how happy I am that HIV and sexual health have featured highly in the public health White Paper, and that is important. It is also important that we acknowledge the problem in socially disadvantaged cases.

Finally, there is no one silver bullet when it comes to preventing HIV transmission, but we can, through a range of interventions, start to reverse this epidemic. Like the Government of the 1980s, the coalition faces a considerable challenge in tackling HIV. Unlike that Government, however, the coalition can draw on 25 years of experience in dealing with the epidemic and in understanding what works and what does not. I wish them well.