For children's palliative care, the problem is particularly acute. Atleast 20,000 children in the UK - 10 per primary care trust (PCT) - havea disability or condition that means they will die in childhood or earlyadulthood. Some will die when very young; others will deteriorate over anumber of years. Not surprisingly, families are under huge strain, andhave a range of needs from specialist short breaks, counselling, familysupport services to pain management and symptom control.
And yet children's palliative care services are under threat. Our recentsurvey reveals most providers are facing cuts, redundancies and waitinglists. They're negotiating desperately with PCTs and strategic healthauthorities to save services, while Rainbow Trust Children's Charity hasalready had to axe its North of England team.
There are signs the Government is waking up to the problem. England'schildren's hospice services were recently awarded 9m for the nextthree years. Health minister Ivan Lewis has said: "There can be nothingmore important than the help we give children and families in thesecircumstances." And, crucially, the Government has commissioned a reviewof the long-term funding of children's hospice and palliative careservices in England to feed into the Comprehensive Spending Review.
But one of the biggest challenges the review faces is how to influencewhat happens on the ground, both to support existing services anddevelop new ones. The evidence is that if children's hospices, forexample, are to work effectively in health and social servicepartnerships, they will need a hearing from local commissioning bodies.Unless those commissioning services focus properly on the needs oflife-limited children, many children and their families will continue tosuffer.
Lizzie Chambers, chief executive of the Association for Children'sPalliative Care, which is working with the Association of Children'sHospices to get long-term funding for children's palliative care.
