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Jeff Ennis: My hon. Friend makes a good point. However, I have had discussions with Mike Farrar, the chief executive of the South Yorkshire strategic health authority about this, and unfortunately the funding of hospices is clearly in the hands of local PCTs. It has absolutely nothing to do with the strategic health authorities. My hon. Friend also mentioned the setting up of a lead PCT, and we should explore that issue further.

Mr. Meale: Perhaps there is a third alternative. My hon. Friend knows that, in the midlands and part of the north, a new type of authority has been created. It is a model authority that deals with mental health, and it stretches right through Leicestershire, Derbyshire, Nottinghamshire and parts of Lincolnshire; its boundary ends at Wath upon Dearne in Yorkshire. Perhaps this problem could be solved by the introduction of a brand new model—a pilot model, perhaps—which could encompass such an area and get proper funding, as the new mental health authority is doing now.

Jeff Ennis: I thank my hon. Friend for making that excellent suggestion, which we could possibly explore further at the conclusion of today's debate.
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In regard to other funding sources for children's hospices, many such hospices have received grants through the New Opportunities Fund, which is now known as the Big Lottery Fund. That money is time limited, and runs out in March 2006. Lottery funding has become an important mainstay in meeting the annual running costs of children's hospices. It has provided a measure of security and helped to reduce the demanding pressure on fundraising. There is a concern, however, that that security will disappear when the funding comes to an end and is replaced by a more fragile funding mechanism. Children's hospice services recognise the need for some independence from the Government in order to be flexible enough to satisfy the needs of their users, but they also require a sustainable level of core income so that they can continue to provide the highest levels of care and support.

The Government's response to the Health Committee inquiry on palliative care says that they are on course to implement a payment-by-results national tariff with respect to palliative care in both the NHS and the voluntary sector in England by 2008–09, and a national partnership group has been set up to address the development of health resource groups in the palliative care sector. The Association of Children's Hospices is concerned that a payment-by-results model will unbalance the essential mix of care and support that children's hospices provide to children and families.

Children's hospices offer a diverse range of essential services involving long-term provision in addition to professional day and night care. Support in the children's homes, access to education, 24-hour support lines, bereavement counselling and social activities are just some of a range of core services that they provide, and not just to the child.

David Taylor: My hon. Friend is most generous in giving way yet again. Having had direct contact on a number of occasions with Rainbows hospice, I know that one of the most valued services of all is bereavement counselling after the loss of a child, in addition to day care, respite care and terminal care. Does he agree that, in addition to further Government funding for children's hospices, there ought to be more attempts made to fund the wish, which often exists among families, for children, and indeed adults in another context, to die at home? Those periods are emotionally and financially stressful.

Jeff Ennis: My hon. Friend makes another excellent point, which I concur with. It is one of the main concerns of the Association of Children's Hospices that payment by results will adversely affect the flexibility and diversity of the service that they provide to communities—not just to the children, but to parents.

I do not know whether the Minister was fortunate enough last December to see a brilliant BBC documentary on the Francis House children's hospice in Didsbury, Manchester, and its chief fund raiser, a young lady by the name of Kirsty Howard, and her family, who have succeeded in raising the magnificent sum of over £5 million for that hospice. I am pleased to say that Bluebell Wood has its own talisman in the form of five-year-old Jack Waller from Wombwell in my constituency. Jack, who suffers from primary
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pulmonary hypertension, has become the voice and face of Bluebell Wood, just as Kirsty Howard has become the voice and face of Francis House.

Characters such as Jack and Kirsty require more direct Government support. I would like the Minister to say in his winding-up speech whether he agrees with me that the funding differential between children's hospices and adult hospices is too great and needs to be closed. I am not saying we should bring children's hospice funding up to the 30 per cent. level, but we should certainly go some way to try to fund children's hospices better.

The Association of Children's Hospices wants me to make the following points. It would like there to be a full cost recovery model for agreed services that acknowledges the true level of community support that children's hospices provide. It would also like children's hospice organisations to be involved in the development of the payment-by-results framework via input to groups such as the health reference groups to ensure that that happens. It also believes that PCTs and local authorities have a responsibility to ensure that statutory funding sources are more obtainable for children's hospices.

The association also wants the funding process to be simplified and streamlined to make it easier for children's hospices to apply for statutory grants. There needs to be central guidance from the Government to PCTs and local authorities. Combined funding pots might be a solution to make the funding process simpler and fairer. Children's hospices offer a diverse service, and offering to communities the type of statutory funding sources available is also diverse, as they cover not just health but social grants.

In my opinion, all hospices should receive set statutory funding. It is probably too prescriptive, but why cannot children's hospices all have ring-fenced statutory funding at a set percentage, or at a set cost per bed provided? Surely there must be better methods of drawing down NHS funds than children's hospices having to negotiate with each and every primary care trust in their region: up to 27 different sets of negotiations with all the players in the sub-regions.

I hope that the Minister will not go away from tonight's debate believing that I am just whingeing about the Government's initiatives or inaction. That is certainly not the case. I value the many great strides that the Government have made in supporting all hospices since coming to power. I know that the Minister values, as I do, all the outstanding work currently taking place in hospices up and down the country, and I hope that he will take on board many of my points in the spirit in which they have been made.

6.21 pm

The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman): I am grateful to my hon. Friend the Member for Barnsley, East and Mexborough (Jeff Ennis) for instigating today's debate, and I congratulate him on his persistence and tireless efforts on behalf of children's hospices. I was not aware that he had such a redoubtable constituent as Mr. Finnegan, who is prepared to sit on a cold toilet for 90 days in
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support of his campaign. I hope that he will send my best wishes to Mr. Finnegan and that we can reassure him in someway about the issue on which he is campaigning. Having discussed the matter with my hon. Friend on several occasions, however, I feel that I shall be disappointed if I am too hopeful about convincing him today.

My hon. Friend and I agree that the children's hospice movement does vital and excellent work and that children with long-term or life-limiting conditions deserve the best care that we can offer. We differ, however, on how best to commission and support the children's hospice movement. Since we have debated and discussed this issue previously, as I said, I have little confidence that I will convince him, but I shall do my best.

My hon. Friend would wish me to put in place the same levels of support and the same commissioning mechanisms for children's hospices as for adult hospices. But children's palliative care is different from that of adults. Children's palliative care involves much longer term provision and is structured around the management of serious chronic conditions, often with unpredictable disease pathways resulting in complex care needs, at home, with a hospice being one possible part of a child's package of care. Children's palliative care takes place in hospitals, in children's wards, mostly in the home, and occasionally in a hospice. That is a very different mix from that in relation to adults. That is one reason why we should not have the same commissioning mechanism for children's hospices as for adult hospices.

Essentially, we aim to promote the quality of life associated with home life, social interaction and growth, increasing independence and the customary pursuits and developmental achievements of childhood. Support measures in the child's home, access to education and social activity are all key to that achievement. The commissioning strategy for children's palliative care must recognise that, and must not create a position in which such investment has been made in hospice provision that children are encouraged or pressed to occupy that provision to justify its cost and existence. Children should only go into a hospice when it is in their interest and not for any external reasons.

Let us consider how commissioning will work for a typical constituency and what implications we would expect that to have for the development of a local hospice service for children. I have chosen that strategy to try to convince my hon. Friend, as I have never convinced him by using a conventional approach.

The commissioning process should start with the statutory and voluntary sectors: the local primary care trust and the local hospice movement, working in partnership to design a service that they think meets the needs of local children. I would expect the primary care trusts to take the lead, and to build on the design by using the guidance provided for them. For example, the National Council for Hospices has produced guidance on how to assess palliative care needs and provision in a local area. I would also expect them to read the section on palliative care in the national service framework for children—about which I shall say more later—the guidance from the Association for Children with Life-Threatening or Terminal Conditions and their Families,
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and the Royal College of Paediatrics and Child Health's "Guide to the Development of Children's Palliative Care Services".

More detail on specific requirements for palliative care is provided in the Association for Children with Life-Threatening or Terminal Conditions and their Families' guidance entitled "Integrated Multi-agency Care Pathways for Children with Life-threatening and Life-limiting Conditions", published in December. I am afraid they do not go in for snappy titles in the children's palliative care movement! The document was funded by the Department of Health, and subsequently endorsed by the Royal College of Nursing and the Royal College of Paediatrics and Child Health. It presents a pathway to engagement with the child's needs and family needs, which can then be used to ensure that all the pieces of the jigsaw are in place so that families have access to the appropriate support at the appropriate time. The guidance is there to readily identify needs and gaps in service provision, and to stimulate the development of a local strategy that will meet the needs of the local population. We are providing all that evidence and guidance to allow PCTs to work out what provision they need to make in their areas.

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