Parents tell of "battle" to get basic healthcare for disabled children and of agencies routinely "passing the buck".
Campaign group, Every Disabled Child Matters, today launches a new report, Disabled Children and Health, highlighting the failure of the NHS to meet even the basic needs of disabled children.
At a reception in the House of Commons, an audience of MPs, primary care trust (PCT) leaders and commissioners and disabled young people and their families will hear about the battle disabled children and their parents face accessing healthcare services. Phil Hope MP, the Minister with responsibility for disabled children's health services, will respond on behalf of the government.
The campaign report highlights a clear disparity between central government policy and local delivery. Despite recent policy and funding commitments for disabled children's heath services, the campaign's correspondence from PCTs reveals widespread confusion about the roles and responsibilities of the health service to support disabled children to lead ordinary lives.
One parent of a child with a rare and life-limiting condition who requires 24-hour care said: "We repeatedly see local agencies passing the buck when it comes to agreeing care for my son. Social services tell us they can't provide night care for him
because it is medical care, while health tell us they can't provide it because it is a family support service.
"Where are the needs of my son in all of this? We haven't seen any evidence of joined-up working, and we are made to feel like we have to beg to get anything done."
Disabled Children and Health makes clear that families are yet to experience the "high quality" and "responsive" health services that would enable them to lead ordinary lives, as set out in the recent child health strategy 'Healthy lives, brighter futures'. They are also not experiencing the 'improved outcomes and experiences' foreseen by the children's palliative care strategy, 'Better Care: Better Lives'.
EDCM board member and director of the Council for Disabled Children Christine Lenehan, says: "We have welcomed the priority given to disabled children in the recent child
health strategy and the confirmation that PCTs have £340 million in their baseline budgets from 2008-2011 for disabled children's services, including children's palliative care.
"But in the context of a devolved NHS this 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. To ensure this happens, the Department of Health must take a stricter monitoring role in relation to the performance of PCTs."
Your comments (terms and conditions apply):
"I totally agree. I am a parent of a 9 year old special needs boy he is believed to have Smith Magenis syndrome but we cant afford the test so I signed up for a study to hopefully get him diagnosed so that maybe we can receive better support for his needs now and in the future. Right now he needs a special bed that makes him safe in our home and we cant afford it and he needs nursing care. At least once in a while would be nice. He is highly aggressive and can't talk and doesn't do well in public situations so when my husband is at work I try not to go to the grocery store or doctors unless its absolutely necessary he does have times he is very sweet and does ok with strangers but there are also times we have been at a doctor's appt and he lays down and refuses to get up and I'm unable to get him up he weighs 116 pounds and people walk right by. It shouldn't be like this there should be help for us there is no child care that will take him and because there are so few that know what sms is it makes it even harder to deal with I believe if there were more programs out there for nursing and home aids it would make our lives a little more normal. The expense of a special needs child alone is a lot on a family at least there should be some form of help for us." - Christina, USA
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