The Children's Palliative Care Alliance, a consortium of leading children's and healthcare charities, has welcomed today's government strategy, 'Better Care: Better Lives', for improving the care and support given to children in England with life-limiting or life-threatening condition and their families.

Speaking at today's launch, Care Services Minister Ivan Lewis described the provision of support for children and families with palliative care needs as "The test of an effective, modern, compassionate health and social care system". He added that if within 18 months major changes hadn't happened, "then I think we would be worried".

Lizzie Chambers, chief executive of the Association for Children's Palliative Care (ACT) and co-chair of the Alliance commented:

"The implementation of this new strategy will test whether the new devolved Health Service can work for those children whose needs are greatest but whose numbers are small.

" 'Better Care: Better Lives' will give commissioners the information and guidance they need to ensure that children's palliative care services are developed in a strategic and planned way to meet the needs of all children and young people with life-limiting conditions and their families.

The Alliance also welcomed a £20m emergency funding boost for children's hospice services in England through to 2011. Barbara Gelb, chief executive of the Association of Children's Hospices (ACH) and the Alliance's other co-chair, said:

"This is wonderful news. Children's hospice services will still rely heavily on public goodwill for most of their income. This funding gives them a very welcome additional two years to engage with local commissioners to gain secure, long-term funding. And the overall strategy offers commissioners a first-rate route map for providing the full range of children's palliative care services.

The Alliance also called for the government to spell out exactly how much new funding individual PCTs have been allocated for children's palliative care.

Lizzie Chambers added:

"The government can no longer tell Primary Care Trusts how to spend their money, so all children's palliative care providers will have to work harder to persuade and support PCTs to improve the services that life-limited children so badly need."

Barbara Gelb added:

"PCTs tell us it would help them to know exactly how much extra money they have been given for children's palliative care and we will continue to press the government for this information."

Notes

1. ACT and ACH have been leading their members and the Children's Palliative Care Alliance in lobbying for today's strategy and new funding.

2. An estimated 20,000 life-limited children and their families require palliative care services each year. Some 4,000 make use of children's hospices, with 16,000 relying on statutory and other voluntary services.

3. 'Better Care: Better Lives', a strategy for children's palliative care in England, is today published by the Department of Health. It builds on the Independent Review of Children's Palliative Care Services commissioned by the government and published in May 2007.

4. The strategy sets out a series of priority actions for those who are commissioning local children's palliative care services in England. These include actions to improve:

-- Equality of service access to all children regardless of their condition
-- Choice of place of care
-- End-of-life care and support
-- The long term sustainability of services in the long-term
-- The successful transition between children's and adult services
-- The planning and development of an effective and responsive workforce

5. The £20m announced for children's hospice services in England to 2011 builds on the three-year emergency funding of £27m for children's hospice services announced by the government in May 2006.

6. Primary Care Trusts (PCTs) have also been given significant new funding to implement the strategy. However, this money has not been identified separately to PCTs and charities are worried this may reduce its impact.

7. As part of a package to accompany the government strategy for disabled children announced last May, 'Aiming High for Disabled Children: Better Support for Families', the Department of Children, Schools and Families has already pledged £370 million over three years for short breaks for disabled children. Children's hospices and other providers will be entering into discussions with Local Authorities to offer their services.

8. The Children's Palliative Care Alliance is jointly led and chaired by ACH and ACT, and includes representatives from the British Society of Paediatric Palliative Medicine, the Royal College of Paediatrics and Child Health, the Royal College of Nursing and the Council for Disabled Children.

9. Association for Children's Palliative Care (ACT is the national charity working to achieve the best quality of life and care for children and young people with life-threatening or life-limiting conditions and their families.

10. The Association of Children's Hospices (ACH) is the national voice for the UK's 39 operational children's hospices. Each hospice service is an independent charity which relies on public support to continue its work.

act
childhospice