Skip to main content

Christopher's Hospice (Guildford)

Volume 404: debated on Thursday 1 May 2003

The text on this page has been created from Hansard archive content, it may contain typographical errors.

Motion made, and Question proposed, That this House do now adjourn.— [Keith Hill.]

5.14 pm

1 am glad to have the opportunity to debate such an important issue. It must be the lot of all newly elected Members to wonder why good causes do not get the support that they are promised and deserve. We secure Adjournment debates that may result in a new way forward or merely provide the Minister with another opportunity to tell us how much is being done while failing to deal with the core issue that gave rise to the debate in the first place. I hope that the Minister will answer my questions, deal with the realities of the situation and give a strong commitment to resolve the problems that Christopher's faces along with other children's hospices.

Christopher's is a hospice for life-limited children. It is based in Guildford and run by CHASE, the children's hospice service. It is a regional centre for palliative care, providing support to children and their families in an area that includes south and south-west London, Surrey and West Sussex. It is a special place for the children and their families. The Minister will understand that as time is limited, I cannot describe all the services that it provides or the sort of place that it is, but I hope that he will accept an invitation to visit the hospice to see for himself the work that is being done.

CHASE currently provides support in the community and at the hospice for 160 families. Its target is to support 300 families that are spread across 25 primary care trusts and those local authorities that have responsibility for children's services. The hospice is a success. It was built at a cost of £3.8 million with enormous fundraising support from the community, which it continues to receive. It opened its doors in November 2001, around the same time that PCTs were beginning to find their own way with their budgets.

Like any facility in the south-east, the hospice faces the usual problems in the health service of recruitment and retention of staff, a shortage of children's nurses, which is a specialised field, and difficulty with finding accommodation in the area. Fortunately, we have had some help from St. Faith's charity to mitigate that because medical staff at Christopher's do not qualify for key-worker housing. Five out of the nine beds are occupied and that will rise to seven in July. One must ask, however, when free nursing care will be provided for life-limited children.

The Minister will be aware that it is easier to obtain corporate support for the capital costs for building a hospice than it is for the running costs of any charity. Indeed, there has been a downturn in charity funding as a result of the downturn in the stock market. Money is in short supply. Although CHASE receives money from the New Opportunities Fund, that covers only 10 per cent. of its running costs for each of the next three years and has to cover its community services, palliative care, respite care and the end-of-life services. Will the Minister confirm that lottery money will not replace Government money for essential health care?

Christopher's receives no national health funding as such. It got money for three children to receive palliative care while their houses were being adjusted, but that is all. The hospice and CHASE do not expect the NHS to pick up all the running costs. It provides a special service, which is the nature of hospices, that is outside what people would expect of the NHS. But Christopher's works hard with local families and works on a regional basis to ensure that services are not duplicated. It supports families when they face enormous stress. That support is important for a family with a child who may be dying because many families break up when a child dies. Christopher's keeps those families functioning.

There are costs of care that Christopher's meets which, under other circumstances, would be met by the health service. It pays fees to the local doctors' surgery for two named doctors to visit part time four times a week and for call-out services. That ensures continuity so that the families and doctors know one another when the children visit or stay there. At the moment, that costs £48,000 a year and we expect a substantial increase next year, but we must remember that that is for a national health service.

The problem is not new. I have raised it since I was elected. Indeed, back in the 1980s the right hon. Member for South-West Surrey (Virginia Bottomley), in her capacity as Health Minister, said:
"The Government's objective is to work towards a position in which the contribution from public funds available to voluntary hospices and similar organisations matches that of voluntary giving. This will provide a clear basis to plan ahead."—[Official Report, 15 December 1989; Vol. 163, c. 847W.]
That funding did not become available.

In a debate in 2001 the hon. Member for North-West Leicestershire (David Taylor) said that children's hospices receive, on average, only 5 per cent. of their running costs. Christopher's does not even get that. As I have pointed out in the House on other occasions, the NHS saves money through the work of Christopher's. When a child leaves the Royal Marsden hospital, possibly at the end of its life, freeing up a place for another child, the funding for that child stops, but the child's health needs do not.

Last year—51 weeks ago in fact—having followed up this issue on behalf of CHASE, the hon. Member for Putney (Mr. Colman) and I met the then Minister, the hon. Member for Pontefract and Castleford (Yvette Cooper). That was a useful meeting, but another year has passed. We explained why primary care trusts do not fund children's hospices: there might be 25 trusts covering 160 children using the services in a population of 3 million. The Minister understood that hospices cannot go to PCTs for funding for just one or two children in the area. We agreed that children's hospices should be regionally based to use resources wisely, so as not to duplicate. Indeed, CHASE sited Christopher's in Guildford so that it could be the provider for the region, riot just for the town.

The hospice had its formal, royal opening last October, and having heard nothing after the meeting, I wrote in November to the Minister of State responsible for children's health, the hon. Member for Redditch (Jacqui Smith). It took until March to get a reply from the Under-Secretary of State for Health, the hon. Member for Salford (Ms Blears). She stated that funding is available from the PCTs, which are responsible for delivering services locally. It is as if none of that correspondence made any difference. A London PCT will not pay for a child in Guildford—that is a fact.

Thankfully, the number of life-limited children in any PCT area is likely to be small. We do not even know how many there are. However, CHASE has approached trusts, and it does not get an answer. With so few children, the costs do not even register on their budget lines. The Under-Secretary suggested in her letter that
"funds are available for disabled children through local authorities. Respite care breaks can be funded through the carer's grant and the quality protects programme."
However, the carer's grant supports carers, not hospices. There is no mechanism to take that money and pay a hospice for respite care. The grant deals with AIDS facilities and others. The website for the quality protects programme says nothing about hospices. We escalated the matter by making inquiries, and got a very nice e-mail in reply. It does not mention hospices, and it does not answer our question, "Can you fund hospice care?" All that we have is the new opportunities fund.

Both Christopher's and CHASE are brilliantly run by first-rate people. The chief executive of Christopher's knows exactly what he is doing, and the chair of the trustees knows exactly what she is doing. The fundraising goes on, and we are fortunate that it does. We should be able to expect money from the cancer plan, but we will not get cancer cash. The good news for the children is that most of them get better or die from other conditions, so it is no good our looking to the cancer plan for funding.

The first child who died in Christopher's was Matthew Ashton of Camberley. He died of a brain tumour on 5 January 2002. Eight days before, just after Christmas, he came from the Royal Marsden hospital, which could do nothing more for him medically. He needed 24-hour morphine, and he came to Christopher's. He was visited by Gianfranco Zola, which was lovely for him and the hospice. That visit was very much appreciated and it made a lot of difference to everyone. His family were able to stay, and because Christopher's has special facilities for the care of children after they have died, the family stayed a further eight days so that other family and friends could come and say goodbye to him in the Mistral suite. However, when Matthew left the Royal Marsden, even though he needed 24-hour care, the NHS funding stopped, as it did for the five children receiving end-of-life care who died in March this year.

It has been suggested that we wait for the national service framework for children. There is a subcommittee for children with disabilities on which the Association of Children's Hospices has one representative, so no doubt the report will contain a short paragraph; but will it deliver any funding? It appears that the care of dying children is not important enough to be funded by the taxpayer. What do the Government plan to do about funding the health care of dying children?

I want to know how the initiatives described in the letter from the Under-Secretary of State for Health, the hon. Member for Salford, will deliver the funds for that health care. We cannot find out. Are there case studies to show how it happens? The Association of Children's Hospices cannot see it happening and we cannot find anything. We want to know how much longer children's hospices have to wait until they are told what is available, while in reality little is received. I want to know why children in hospices do not receive free nursing care.

How can I explain to all those people who raised £2 million for CHASE last year that the Government are not prepared to fund the health care of dying children? I want an assurance that their motives are not cynical. Is it because those people are good fund raisers and CHASE raises money itself that we do not get national health service money? I hope not, because that would be an insult to those hard-working fund raisers.

In using such phrases, it is not my intention to play a big emotional card—that would be easy, but wrong—but we do not seem to be making our case. Ahead of the debate, I made it clear to the Minister's office that I need real answers. I do not want a recitation of the good works of the Government—we have had that, and it is not working. I am not here to score political points. All I want to know is what support the Government plan to provide for the health care of the children at Christopher's.

5.27 pm

I congratulate the hon. Member for Guildford (Sue Doughty) on securing this debate on an issue that is of concern to her and to many hon. Members, and on the great sincerity and tremendous vigour with which she pursues it. I am well aware of the excellent services provided by children's hospices, especially the hospice to which she refers. My constituency is served by the Haven House hospice in Waltham Forest, and we are grateful for all the good work that hospices do. As the hon. Lady would expect, the Government are absolutely committed to helping children with life-threatening illnesses and we value and support the tremendous contribution made by the hospice movement.

This is a complicated area and there is much to say. Children with life-threatening conditions need a very special form of care. First and foremost, they are children and they want to behave and be treated like other children, but the care should be tailored to the individual nature of the illness, its progression and the variety of individual family circumstances and preferences. All those factors are relevant to the support that is offered. We as a Government have long recognised that respite, short-break care is essential, as it allows the family time to rest and enables them to continue to care for the ill child, siblings and themselves. It also brings the opportunity for peer socialising for children and young people, which can be difficult to access elsewhere.

We also know that the death of a child is the most devastating experience any parent can have. How children die, how they are supported in their dying and the quality of after-death care have a major impact on how families cope with their grief. Children and families have individual needs that should be recognised; they should be afforded time and space and treated with respect and dignity. Hospices can have a major role in all of this, from the overall approach to the care pathway, to the smaller but individually life-enhancing elements of care.

The way in which the hospice movement has evolved means that buildings are quite often put in place before discussions have been held about how the services will be supported. We must ensure that there is more synergy between capital funding and revenue funding.

The hon. Lady will know that the first children's hospice came about in about 1982. We have had 20 years of children's hospices, and more are being built. We have more than 20 now. More are being built because good local people come together and want to provide. They want a charitable facility. Important discussions about ongoing revenue are essential and vital, so there is a complicating factor in this relatively new hospice development.

We are aware of the difficulties and have been working with and supporting the Association for Children with Life-Threatening and Terminal Conditions and their Families in producing guidance on effective approaches to providing the range of palliative care that is necessary. We also have a continuing dialogue with the Association of Children's Hospices, which is enormously helpful as many hospices, as I have explained, are in their infancy, and developing. Some are only a year or so away from their official opening. That is one reason why the funding base for children's hospices has not been well embedded.

In terms of securing health funding, it is for primary care trusts to negotiate locally what sort of services are needed in their communities. To do so, they must have a genuine relationship with the voluntary sector to see how those services can be provided. There must be a proper discussion at local level that relates to funding decisions. I urge hospices to get into that discussion—both those established and those in planning—with their PCT partners and their strategic health authorities.

CHASE has attempted to contact all its PCTs but they do not reply, even to letters.

The Department of Health would look into any issue where a health provider had written a letter and had not received a reply.

I say with as much sincerity as I can that the Department has rightly come to the conclusion that it cannot attempt to run the entire health service from Whitehall. As the hon. Lady knows, we have localised down to primary care trusts and to strategic health authorities. At the same time—this is different from the context in which she has raised these matters in the past—we have said to PCTs, "We have increased your allocations"—that is the fact—"way beyond inflation, between 7 and 9 per cent. You have this money for three years. You can now plan your cycle or journey, as it were, with different health providers over a range of issues for three years." That is a difference.

Of course, primary care trusts are coming out of their infancy as new organisations and are clustering together. Strategic health authorities are taking an interest. That must be the right position. I am not saying that it is perfect, but what I have outlined must be the starting premise. Alongside that, as I shall explain, the national service framework for children and the work that we hope to do next year are vital, as they raise the game, concentrating the minds of people in primary care trusts and strategic health authorities on what they are doing and the standards that are in place. We are on a journey, but the funding that has been provided through the New Opportunities Fund adds up nationally to £14 million just on palliative care awards to hospices. In addition, there is the national service framework, a three-year period of funding, and an increase in funding, so I am sincere in saying we are in a stronger position in this area than we have been for some time.

To get the most out of palliative care services for children, we need to remember what makes them different. The ideal is to have a range of services available that recognise that children's palliative care is unique because it is part of the journey of care and therefore of life, and not the end stage, as it is for adults. It is as much about the quality of living as the quality of dying. It is not just "what you do when nothing else is left". It should be part of the care provided as soon as it is clear that a child or young person has a life-threatening or life-limiting illness. It requires a comprehensive approach for the child and family, and challenges all patient and professional services to develop a wider understanding that palliative care is an active approach to management.

That adds up to the need for real partnership, based on honest and open communication free, I hope, of jargon. Above all, it means thinking intelligently and humanely about the specific needs that a child or family may have, which can only be gained through partnership. That is the premise from which we start in the Department. That is what we are pushing and it is the thrust of the national service framework. It is the challenge in palliative care for children to which we expect our PCTs and strategic health authorities to step up. Partnerships need to focus more on areas where provision has been difficult in the past because of geographical spread. The hon. Lady will know that the desire of good people to open a children's hospice is such that there may be neighbouring hospices or hospices with a wide geographical spread. The Department of Health has little control over the demography of children's hospices, but we have to respond nevertheless to the need for tailored support for specific illnesses, conditions and age ranges for which there may have been a lack of provision in the past. We must also take into account the needs of minority ethnic communities, whose access to health and social services is less than it should be.

What needs to be changed to help hospices to secure funding? There are a number of issues, but clearly if any initiative is to be funded, funding must be available to PCTs. If we expect them to take a view on what may be an increasing demand on their resources, we must ensure that they are aware of the potential and the benefits of hospice care. We must also work up a framework to guide and assist positive partnerships. We need to address those issues and I am glad that we can now do so from the strongest position that we have ever occupied. It may not yet be the gold standard that we all desire—the hon. Lady is an active campaigner on the issue—but we are in the strongest position and we have a good foundation. The money that we are providing to hospices through the New Opportunities Fund is also important, and is made available through the work of the Department of Health and the Department for Culture, Media and Sport, where that money is located, so to speak.

Hon. Members will recall that in December my right hon. Friend the Secretary of State for Health announced the allocation of £148 billion to primary care trusts over the next three years, as I have outlined. That represents a cash increase of more than 30 per cent., and means that no PCT will receive an increase in funding of less than 28 per cent. over the next three years. From April this year, local PCTs will control over 75 per cent. of the NHS budget, and the average PCT budget will grow over the next three years by almost £42 million.

I hope I am not being too cynical, and I would not want to seem ungrateful for the NOF money—of course we are grateful for it—but from what has been said I am learning that PCTs should be paying towards hospices, but they are not. They have more money, partly from the Department of Health and partly from the lottery, and some of that should be going to the hospices. Are hospices still being funded mainly by lottery money? What about free nursing care? What about nursing care for children when they leave NHS facilities? Does the Department of Health have any direct responsibility?

The responsibility is that of the national health service. I make a distinction, which is not a mere semantic distinction—it may represent a fundamental difference of position, but I need to articulate it. The hon. Lady referred to the Department of Health. I have made it clear that the £148 billion is not Department of Health money; it has been allocated to primary care trusts.

There is a great dichotomy. I have responsibility for diabetes, renal failure, pharmacy and dentistry. As the hon. Lady knows, in any health care economy, there are a range of important illnesses and conditions. Primary care trusts, with strategic health authorities providing performance management, must decide how that money is spent in a locality. As a Minister, I can tell the hon. Lady that it would be unusual if I had a meeting in my office and a group interested in a particular health issue did not say to me, "Minister, can you ring-fence the money when it gets down to the primary care trust, so that we know we will get it?"

I understand the point about not ring-fencing money. I am still having difficulty in understanding why a child who dies in a national health hospital has their nursing and medical care paid for, but a child who dies in a hospice from the same illness or renal failure or whatever does not.

The Department of Health acknowledges that hospices are arriving on the doorsteps of primary care trusts every year. The national service framework is the lever that will bring about change. I said that the Department of Health was not in the business of giving out that £143 billion, but we are in the business of setting clear standards and saying what we expect. I am advised by officials that the children's hospice movement eagerly awaits the national service framework, because it wants those standards as the basis on which to begin a dialogue with the primary care trust and the strategic health authority about the ways in which they can assist hospices.

I hope that there is not too much distance between us. I understand the hon. Lady's frustration. As a Back Bencher, I raised similar frustrations with regard to my local hospice. My Department's responsibility is to set a clear direction of travel, but the picture today is much better than it has been in the past because of the New Opportunities Fund. The hon. Lady will know that St. Christopher's received £650,000, a significant amount of money, plus

For the record, is the Minister referring to St. Christopher's hospice, which is different from Christopher's hospice?

The hon. Lady is quite right. Christopher's hospice received £650,000, and the CHASE Children's Hospice Service received £74,000 in bereavement and palliative care awards. The hon. Lady says that that money may be used for capital spending and other costs, and I understand that. The Department expects high standards and we continue to work with children's hospices to support them as best we can. What is said in the House is on the record and is available for the hospice movement and for children's hospices to use when they are discussing such matters with colleagues locally.

The emerging findings highlight a compelling body of evidence from research and inspection reports that disabled children and their families do not always receive the support that they need. Moreover, there are particular concerns about services for children with life-limiting and life-threatening conditions. More flexible child care and short-term breaks are needed, and more co-ordination is needed in planning. To improve cooperation between social services, the health service, schools and local education authorities, some areas have multi-agency groups at a senior level to plan and commission services. Some groups also involve housing, transport and leisure services to promote inclusion in the community and report to local strategic partnerships.

The NSF is a 10-year strategy for improving the delivery of health and social services for children and young people, and maternity services. The outcome will be a coherent and integrated approach to services for sick and disabled children. It is already having an impact and that will grow with more funding coming on stream in successive years and the development of a better and more comprehensive understanding of the range and quality of services necessary to support our most vulnerable children and their families.

I emphasise that we are sincere in our wish to achieve that. I do not think that the distance between the hon. Lady and the Government is too great. In the past, as they have sprung up children's hospices have suffered from a funding lacuna, partly as a result of not being able fully to access ongoing revenue. However, I believe that the money that has been allocated down and the establishment of the NSF and NOF represent a much stronger position than we have been in for some time. Any NSF should project forward 10 years. Throughout the House, we all accept—this is not a party political issue—that there have been historical capacity constraints and issues in the NHS. Today, on May day, only a very short period has passed since the 1 per cent. increase in national insurance contributions, which will feed its way down.

I believe that through the standards that have been set and the work of patients forums and scrutiny panels at a local level, as well as through the inspection regime that we have introduced, there is a more positive environment for the children's hospice movement. I am sure that the hon. Lady will continue to raise the issue, which the Government will continue to take seriously.

Question put and agreed to.

Adjourned accordingly at ten minutes to Six o'clock.