The NHS is still failing to meet the basic health needs of disabled children, despite funding and policy commitments from the government, according to a new report.
The report accuses primary care trusts (PCTs) of an “unacceptable” failure to allocate funding to disabled children’s services in a “fair and transparent way”.
The campaign group Every Disabled Child Matters (EDCM), which produced the report, said there was a “clear disparity” between central government policy and the experiences of families, with “widespread confusion” among PCTs about their responsibilities.
The report, Disabled Children and Health, says that disabled children and their families are yet to experience the improved services promised in the government’s children’s palliative care strategy (published in 2008) and its child health strategy (published earlier this year).
The child health strategy stated that PCTs have £340 million of non-ringfenced money which they should spend on disabled children’s health services from 2008-11, with four priorities: short breaks, powered wheelchairs, community equipment and palliative care.
Christine Lenehan, EDCM board member and director of the Council for Disabled Children, said the Department of Health had to be “stricter” in checking that PCTs were spending this money on disabled children’s services.
As well as problems with specialist services, disabled children also face barriers accessing universal health services such as GPs and dentists, often due to the “inappropriate” attitudes of health professionals or a lack of training.
Among other recommendations, the report highlights the need to provide disability awareness training for all PCT staff, and to improve community equipment, wheelchair, continence and therapy services.
The report also says that PCTs and local authorities should work together better to help children with complex health needs and those who need palliative care.
Lenehan said the government’s policies and funding “will only make a difference to the lives of disabled children if every PCT demonstrates strong leadership and has a clear accountability structure for disabled children’s services”.
Phil Hope, the care services minister, said: “There are some fantastic examples of the NHS working really well for disabled children, but too many families with disabled children struggle to get the support they need – that’s why we are funding short breaks, community equipment and wheelchair services and improving end of life care.
“I am determined to continue to drive improvements forward for children with disabilities and welcome the contribution this campaign will make.”
June