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19 Jun 2002 : Column 126WH


1.30 pm

Dr. Vincent Cable (Twickenham): May I express my appreciation for the opportunity to raise an issue of great importance and sensitivity?

The Minister knows from Question Time yesterday that the issue of hospices in general and children's hospices in particular concerns people on both sides of the House; it is not a partisan issue. The Government are rapidly developing policy on the matter but I want to pursue certain aspects of it.

Before I turn to some of the more general policy matters, I want to place the subject in a personal and local context. As a society, we have become more honest about issues of life and death and there is now an open debate about a problem that families face: there comes a point at which medicine can no longer deal with disease, when people wish to live out the last few weeks or months of their life in dignity, surrounded by people who care for them and love them. In many cases, that will take place at home. I went through that experience a year ago, when my wife died of cancer at home. However, for many people that is not possible as work arrangements cannot be made and caring support is not available, so a hospice is the best solution. There is a growing acknowledgment of the crucial role that hospices play within the health service.

At a local level, certainly within the last few years, there has been an upsurge in my part of London of the Shooting Star Trust, an enormously successful and popular charity, which has won people's hearts. It is a children's hospice charity, which was started by a person in my constituency called Kate Turner. The charity has been brilliantly successful in raising about £3 million so far. It has obtained land from the local council and the hope is to embark on building the hospice towards the end of the year. With the dedication of its supporters and the head of steam that has built up, I have no doubt that the project will happen and that it will be successful. However, it would happen more quickly, on a bigger scale, and on a more sustainable basis if the hospice could be sure that there was some financial back-up from the national health service because, as with many hospices, most of the children who go there will be on referral from the NHS.

I acknowledge from the outset that we are faced with a change in the policy environment. The NHS cancer plan is explicit. It states that

It worries some charitable hospices that at a time when the Government formally acknowledge that they are an important part of the NHS, the Charity Commissioners say that if that is the case, the traditional basis of charitable funding comes into question. The Charity Commission advises charities—I am sure that the Minister is familiar with this—that trustees cannot normally use a charity's funds to pay for services that a public body is legally required to provide at public expense. However, trustees may use a charity's resources to supplement what the public body provides. That seems to me to change slightly the balance within which hospices have normally arranged their funding.

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Therefore we are moving to an environment in which the NHS does accept responsibility for hospices, but we start from a position where it is overwhelmingly a private charitable activity. I shall rehearse some of the figures to place them on the record, although the Minister will be familiar with them.

In January this year, 3,029 hospice beds were available in England and Wales, of which 595 were based in the NHS and the rest were all charitable—mainly local charities rather than the big national ones. Currently, 28 per cent. of funding for adult hospices comes from the state—the NHS—a figure that has unfortunately declined in recent years. Back in 1997 it was 33 per cent.

At Question Time yesterday, the hon. Member for Loughborough (Mr. Reed) highlighted the particular problem of children's hospices. They are a relatively new development in the hospice movement, but public funding in that sector is significantly less—only about 5 per cent., an extremely low figure—than in adult hospices.

Dr. Evan Harris (Oxford, West and Abingdon): Helen house is a children's hospice in Oxford, in my constituency. It has led the way in the development of children's hospices, yet it receives no statutory funding whatever and finds it hard to maintain existing services, let alone set up new ones. It has just started the development of Douglas house, a hospice for young adults who do not fit into either the adult or children categories. Given the Charity Commission's advice and the fact that public funding for children's hospices is already at a low level and falling, there is concern about how Douglas house will meet its running costs.

Dr. Cable : That helpful intervention reinforces my point. If the average is 5 per cent., in several cases public funding might well be at or close to 0 per cent. I certainly hope that the hospice that I am looking forward to seeing in my constituency will avoid that problem. As my hon. Friend suggests, it is not just that the funding of hospices, particularly children's hospices, is making no advance; it is a struggle to avoid going backwards. The last financial year saw an increase of about £14.5 million, much originating with staff costs, which are linked to NHS salaries. Only about 22 per cent. of that amount was covered by NHS funding. Additionally, many hospices quite properly have regulatory obligations: care standards inspections, checks for criminal records, and national insurance surcharges costing about £2 million, all of which have to be catered for. Many hospices are now fund-raising not in order to develop, but to stand still.

That is the context in which I want to pursue Government funding—directly or indirectly through the lottery—with the Minister. First, it would be helpful to establish what sums of money we are talking about. In yesterday's answer the Minister referred to about £50 million a year of additional Government funding and it would be useful to have that figure confirmed. I understand that that figure comprises the ring-fenced £50 million over three years as part of the cancer plan; £70 million from the lottery—is that covered in the Government total?—and various other bits and pieces such as the welcome £3.5 million a year for drug costs, imaging and ambulance services and the recent

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announcement that specialised consultants, registrars, will also be funded. Is that right or have I misunderstood how the extra £50 million was arrived at?

The Government funding is welcome, but people at the sharp end have various questions about how it works, so I shall put specific points to the Minister. The £50 million ring-fenced money does not appear, at least so far, to be getting through to many hospices. The Minister will be familiar with the survey by the National Council for Hospice and Specialist Palliative Care. It covered each of the 34 cancer regions and found that few have identified money that has come through to the hospice movement. In the area covered by the Shooting Star Trust, which contains approximately three cancer regions, I could identify only £60,000 that had been located in the first financial year of the programme. The money is clearly not getting through, and it would be helpful to discuss that problem.

In the Minister's reply yesterday, she helpfully said that access to funding may be gained under the programme with the quality protects exercise and carers' grants. Will she explain how hospices such as the one that I represent can access that stream? On primary care trusts, the hon. Member for Normanton (Mr. O'Brien) made the point yesterday, with which most of us would identify, that people do not often get far when they go to their local primary care trust. That is simply because PCTs view such work as an optional extra. They receive no Government funding for it, so they are not very co-operative.

What plans do the Government have to create a framework for hospices and palliative care, through perhaps the formal structure of the national service framework, to determine a minimum standard of provision from PCTs with funding streams attached so that they can respond in the same way as they would to other aspects of NHS funding? On Government funding, are there any plans to enlarge the categories of items for which the NHS takes responsibility? In the past few months, the Minister has said that there will be funding for drugs and specialist registrars. Will that be extended to other staff? That is what the hospice movement is primarily concerned about.

In my last few minutes, I should like to pose some specific questions on lottery funding. For my local hospice, it has become the key topic as well as the most difficult and impenetrable one. The £70 million is a lot of money, and I understand that £48 million of that is available for children's hospices through the New Opportunities Fund. That gave rise to considerable expectations, but when the hospices approached the New Opportunities Fund, they found out that only a small part of that total is available for hospices as opposed to more general palliative care. Palliative care is valuable but, given the demands of the hospice movement, it means that the sum available to hospices—about £15 million—is not large enough.

A more serious aspect for my local hospice is that none of the money appears to be available for capital spending. It is all for revenue. If one is trying to get a new hospice off the ground to meet local demand—about 1,000 families are completely uncovered in my constituency—from where does the capital come? Will it all have to come from charity, or is there some way in which hospices can access a combination of lottery and Government funding?

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One lottery stream is the New Opportunities Fund, which has those problems; the other is the community foundation. When hospices have approached the community foundation, they have found it even harder to penetrate. It does not give priority to hospices or children, but operates on a crude Robin Hood principle that only the most deprived areas of the country can get access to it. That means that my part of London cannot. The foundation deals with averages, but there are many pockets of poverty in my constituency and south-west London generally. Rich people with a terminally ill child will go to the private sector, but for people on middle or low incomes, the needs are acute, and the community foundation's redistributive approach to funding is not helpful.

Will the Minister say something about the discussions that she and her colleague at the Department for Culture, Media and Sport are having with the lottery about how the funding can be used effectively? I should also like a response to the broader question of how Government funding can be used, particularly in the case that I have mentioned of a new children's hospice.

1.45 pm

The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears) : I congratulate the hon. Member for Twickenham (Dr. Cable) on securing the debate. The subject is topical and of concern to all hon. Members, as was evidenced at Question Time yesterday.

First, I want to place on the record the tremendous contribution made by the hospice movement in caring for people at the most vulnerable time of their life. Both the adult and children's hospice movements do a fantastic job wherever they operate, and they have made the United Kingdom a world leader in that field. When the hospice movement was founded, there was a great deal of scepticism that it might not be an appropriate way to care for people, but in the 1960s tireless lobbying, a lot of research and excellent clinical practice ensured that that type of specialist palliative care was recognised internationally.

As the hon. Gentleman said, hospice care for children is an even newer development than that for adults. In fact, it is only over the past 20 years that establishments providing such care have begun to spring up, which is probably why the funding base for children's hospices in particular is not well embedded in our normal funding structures. It is right to say that both movements have been based largely on public contributions and charitable fund-raising. Only in recent times has the proportion of statutory funding begun to rise.

The hon. Gentleman made the point that the proportion of statutory funding has in fact decreased over the past couple of years from 33 to 28 per cent., but the actual funding from the statutory sector has increased by 14 per cent. over the past two years. The reason for the apparent discrepancy is that charitable fund-raising has been even more successful, increasing by 22 per cent. In the past couple of years, the

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proportion of money funded from the statutory sector has decreased, but the actual money has increased quite considerably, and we should view the situation in that context. I am delighted that charitable fund-raising activities have been so successful, because it means that more services can be provided, but we are keen to ensure that the statutory contribution continues to rise, too.

Provision has been made for children's hospices to be supported within the national health service. It is for primary care trusts to negotiate locally what kind of services are needed in their communities and to have a genuine relationship with the voluntary sector to see how those services can be provided. That is why there must be a proper discussion through the health improvement programme, which is the main mechanism at local level in relation to funding decisions.

The way in which the hospice movement has evolved means that the bricks and mortar are quite often in place before discussions are held about how the services will be supported. Sometimes the capital expenditure is the easiest part to find, through public subscriptions and the many excellent and laudable ideas that many of us have seen in our own communities, such as buy-a-brick schemes. The building and the fabric are sometimes created before the revenue support is obtained and put in place, which can cause particular difficulties for local health services when they find that demands have not been anticipated or planned for through their processes.

Therefore it is important that the hospice movement as a whole has an ongoing relationship with the primary care trusts, which in future will have 75 per cent. of the NHS budget devolved to them and will be able to take the funding decisions. I say that not to undermine the fund-raising that hospices do, but to show that we must ensure that there is some synergy between capital funding and revenue funding. Otherwise the capital provision could be in place but we would not have the revenue funding, and the service could not be provided. That is not in the best interests of patients and other people who need to use the services.

About 28 per cent. of the running costs of adult hospices are met by the NHS. As the hon. Gentleman said, it is about 5 per cent. for children's hospices. However, there are marked variations even within those figures. It must be recognised that there are some recent arrivals in the children's hospice sector. The Shooting Star Trust, for example, is still being planned, although people in that community have done an excellent job in raising funds.

We must also ensure that we have proper standards. For the first time, the care standards regulations have set out the sort of standards towards which people should work.

On finance, and in response to some of the points raised by the hon. Gentleman, the New Opportunities Fund has committed £70 million to provide palliative care projects in England. Some £48 million of that funding is for children's palliative care, and will support several programmes for direct services in the community: £30.7 million will be spent on 24-hour care for children with life-threatening or life-limiting illnesses, £15.3 million on residential hospice care services, and £2 million on bereavement services based at home, in a hospice, or in the community.

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The new opportunities funding is therefore balanced. Its guidelines and framework were debated in the House and drawn up as a result of close co-operation between the Department of Health and the Department for Culture, Media and Sport. We must recognise that although hospice services are greatly appreciated by the people who use them, there is also a demand for care at home and in the community. There is a case, especially for children, for various options to help to meet the needs of people locally.

It must also be said that hospices are sometimes established in places where people have higher incomes. Successful fund-raising is perhaps more inevitable in more affluent communities where people can contribute more money. That is not always the case, but there are huge inequalities in hospice distribution and access to hospice care. The hon. Gentleman made the important point that social deprivation greatly affects a child with a life-threatening illness. The problems of such an illness are compounded if a community is poor and lacks transport and access to income. It is therefore right that we should consider deprivation as well as access for as many people in the community as possible. I do not say that that should be the overriding, or only, factor under consideration, but the problems are undoubtedly compounded for those who are socially excluded and who find it more difficult to access services.

The £50 million that the Government have committed is part of the money announced as part of the cancer plan to spend an extra £50 million a year by 2004. In my answer to questions yesterday, I recognised the concern in the hospice sector about how much of that money was getting through to the frontline of hospices. That £50 million is not only for hospice provision but for palliative care, including community and home-based provision. As I said, we shall examine the mechanisms for ensuring that that money is spent on the areas that we said should be a priority. We shall consider the outturns of the expenditure for this year and see where the money has been spent, to see whether we can strengthen the mechanisms for next year to ensure that more of that allocation goes through.

The hon. Gentleman also referred to the extra funding for specialist registrars for pathology and imaging, and to meet ambulance costs. We announced that all those things should be available to NHS patients in hospices in the same way in which they are available to NHS patients of other services; that is in addition to the £50 million for the strategy. We sent out guidance to the trusts throughout the country, emphasising that people are NHS patients, and therefore that the costs should be borne in that way.

I acknowledge the hon. Gentleman's concerns about the lottery money not being available for capital funding. A small amount is available for capital, but that is primarily for equipment. The hon. Gentleman is right that the lottery money is designed to support revenue funding; that is the point that I made earlier. In many cases, capital funding is easier to raise through public subscription and charity fund-raising than revenue funding is. That is why it was decided to put the majority of funding into supporting the day-to-day services that people need.

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It is important that we try to get hospices on a firmer footing so that they are more a part of everyday services. As we said in the NHS plan, everyone should have access to good, high quality palliative care services. That is why we commissioned the National Institute for Clinical Excellence to undertake an evidence-based review of palliative care services as part of the palliative care guidance. We want to identify services that are most likely to result in high quality care. The NICE review will benefit the voluntary sector. It will help decision making about service delivery in local areas and it will provide primary care commissioners with a much more robust framework and better information when they are taking their spending decisions.We expect that the initial findings will be available from this autumn. They will be fed into the strategy that we are developing as part of the cancer plan. That will enable us to develop good and robust standards for palliative care.

We have also required all the cancer networks to develop costed strategic plans for palliative care. For the first time we now have a palliative care strategy in each cancer network, based on provision and local population needs. Also for the first time, comprehensive data on the current provision of palliative care at a network level in England are available. Those data will enable people to plan more strategically where services should be. Because the sector has grown up in an ad hoc fashion, we have not had a handle on where the provision is, its quality and how it fits in to ensure that people have access to services right across the field.

It is important that voluntary sector providers are fully played into the decision-making process. That is why we funded them with £54,000 to organise themselves to ensure that their voice was heard in the planning process. A joint conference in May brought together key commissioners and key providers in the statutory and voluntary sectors. We are moving on apace with this whole agenda. The current expenditure on palliative care is about £300 million, of which about £170 million is provided by the voluntary sector and £130 million by the NHS. As I have said, by 2004 there will be an additional £50 million from the statutory sector, which will mean that for the first time we shall make an equal contribution.

I think that I have made it clear that we intend to take action to try to ensure that this money gets further down the line. I also want to place it on the record that many people prefer to die at home. We must achieve the right balance between hospices, community provisions and home. We recently established the Diana community support nurses, who have helped with community care for children with life-threatening diseases. We have a wonderful provision through the Macmillan nurses, who can provide tremendous support for people at home at a distressing time for them and their families. Marie Curie Cancer Care also plays an important role at this difficult time.

It is important that we also invest in training for support for district and community nurses. We put an extra £6 million into cancer networks to train district and community nurses in the principles and practice of palliative care. They are working closely with the hospices in developing their own skills, to extend the

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range of all skills that all district nurses will have in future to enable them to deal with these issues sensitively.

This is an important debate. It clearly engages many of our constituents. Caring for people in the last days of their life, whether they are adults or children, has to be

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an increasing priority. I hope that in future we shall develop a much more robust framework so that everyone in our community may expect to get the best possible care in the last months and weeks of their life. We are determined to see that that happens.

Question put and agreed to.

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