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The Parliamentary Under-Secretary of State for Health (Mr. Liam Byrne): I am grateful to my hon. Friend the Member for Stoke-on-Trent, South (Mr. Flello) for instigating today's debate. I must congratulate him on his focus upon the work of children's hospices—hospices that make such a difference to the lives of his constituents. I am shortly to visit his constituency, and I look forward to meeting some of the people about whom he spoke tonight. In particular, I congratulate him on his work with the Donna Louise trust's Treetops children's hospice, based in his constituency, and congratulate him on his work to launch its funding for life campaign. Other hon. Members will have an equal interest in their own children's hospice and will want to hear what the Government have been doing to ensure that these and other support services grow and thrive.
If the House will permit me, I should like first to set out the seven steps that the Government have taken since 1997 to weave a web of care around the protection and care of children. Since 1997, there has been a transformation in the understanding of the needs of children with life threatening illness and their families.
Step one was the Department's immediate commendation of a report by the Association for Children with Life-Threatening or Terminal Conditions and their Families. That was closely followed by the second step, which was the NHS Executive guidance in 1998 which drew together the lessons learnt during a series of projects providing a range of care to families.
Also in 1998, step three, a team headed by the Treasury invited applications to establish Diana children's community nursing teams throughout the country to build upon the work undertaken during the pilot project programme, and to blaze a trail for the development of home care for children with life-threatening illnesses. Additional funding of nearly £1.5 million for England was provided by the Treasury enabling eight Diana children's community nursing teams to be introduced in England during 1999.
Step four occurred in 1998, when the Association of Children's Hospices was registered as a charity to promote the interests of the children's hospice movement and to develop public awareness and support for children's hospices and paediatric palliative care. The Department of Health has worked closely with the association since then to develop a better understanding of the issues. In particular, it commissioned the association to provide a quality assurance package to enhance the quality of care provided by children's hospice services.
Step five occurred in 2000, when we started discussion with the New Opportunities Fund, the Department for Culture, Media and Sports and voluntary organisations to promote palliative care services for children. That resulted in the 2003 NOF awards, in which more than £45 million was awarded to 135 projects, including 71 awards to home-based palliative care teams.
Adam Afriyie:
I am delighted that this debate is taking place, because the mark of a civilised society is how we treat our children. The Minister has mentioned the New Opportunities Fund: will he make it perfectly clear that the moneys from the New Opportunities Fund have absolutely nothing to do with the Government and concern expenditure by lottery distribution funds?
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Mr. Byrne: I will consider that point later in my remarks.
Furthermore, 39 awards were made to bereavement teams and 25 awards, totalling £15 million, were made to children's hospices. Those projects are being assessed over a three-year period with a view to filling gaps in services and making children's palliative care provision far more mainstream.
Step six occurred in 2003, when the National Institute for Clinical Excellence commissioned the National Collaborating Centre for Cancer to develop service guidance on child and adolescent cancer services, including palliative care and bereavement support. NICE service guidance supports the implementation of the national cancer plan and forms an additional structure to provide for children's palliative care needs.
Step seven involved work with the Association for Children with Life-Threatening or Terminal Conditions. The Department of Health funded the production of and commended the ACT care pathway guidance, which was launched last year to complement the children's national service framework on disabled children and young people.
As my hon. Friend has argued so eloquently, however, seven steps are not enough, and we can and must go much further. To identify how the Government can best support hospices, we must understand how hospices are started, how they work and how they provide the services that make such a difference. That difference is already being made in my hon. Friend's constituency, where I understand that Staffordshire Moorlands PCT hosts the children's community nursing team on behalf of all four PCTs in north Staffordshire. The provision of palliative care for children is implemented through a team that provides comprehensive packages of care through two respite workers who work closely with families, and a nursing team that has two part-time social care workers, one of whom is from the city council and one of whom is from the county council.
Mr. Flello: I hear my hon. Friend the Minister's comments about the PCT's good work. Where was the collaboration?
Mr. Byrne: I agree with my hon. Friend and will address that remark directly in a moment.
Several key themes emerged from ACT's work. In particular, it highlighted the importance of positively influencing the planning and development of future hospices. The association's experience suggests that the desire to set up a hospice often comes from the tragic struggle of a particular family, which can generate enormous energy and a single-minded determination to see through an important dream. To help ensure that such energy is channelled in the right way, the Department can do a great deal more to support innovative services. Crucially—this point lies at the heart of the debate—we must ensure that such services are sustained in the long run once they have been started.
To help those with ambitions to set up hospices, the Department has provided funding for ACT to develop a toolkit on how children's hospices work. The toolkit aims to provide references to the sources of information
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that are required successfully to plan and establish a service, so that any new services can make more informed decisions about how a venture should look. The toolkit will provide a far better understanding of what is involved in starting and running a children's hospice service and an overview of the challenges and pitfalls that such a project may involve.
Most importantly, the toolkit will emphasise the importance of consultation at the beginning of the process. It will also emphasise that children often need different sorts of services, particularly hospice-at-home services. ACT has commented that although establishing a hospice-at-home service is not an easy task, it is often possible to get it up and running far more quickly. Moreover, it can provide a more flexible option by responding to changes in families' needs and expanding or reducing in response to other external factors. Day care and hospice-at-home services should not be viewed as second-class options.
Mr. Byrne: I give way to my hon. Friend, who has such services in her constituency.
Lynda Waltho: I appreciate all the work that is being done to assist with new hospices. However, I am concerned about current funding for hospices that are jumping through all the hoops. They are being assessed by the National Care Standards Commission and providing exemplary care, but they are struggling. That is the biggest problem.
Mr. Byrne: I completely agree with my hon. Friend.
Jeff Ennis (Barnsley, East and Mexborough) (Lab): I congratulate my hon. Friend the Member for Stoke-on-Trent, South on securing this important Adjournment debate. I am sure that he is aware that I have tabled early-day motions on the subject and had a similar Adjournment debate in the last Parliament. I am pleased to see the Minister in his place, because he replied to that debate as well.
The crux of the problem is that children's hospices receive only about 7 per cent. of their funding from the NHS, whereas adult hospices receive about 33 per cent. of their funding from the NHS. It is unfair to compare adult hospices with children's hospices, as the Minister said in the previous debate and today. Nevertheless, the fact is that adult hospices generally have to deal with only one, two or three primary care trusts because they generally represent one town—for example, the St. Peter's hospice in Barnsley and the Doncaster hospice—while children's hospices can be covered by up to 33 PCTs. The onus should be on the PCT to contact the children's hospice to set up an agreement rather than the other way round.
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