NutritionDisabled Children Missing Out On Basic NHS Care, UK
Disabled children missing out on basic NHS care 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."
The report highlights challenges across a range of health services. Disabled children face barriers accessing universal health services such as GPs and dentists, often due to inappropriate attitudes from health professionals or a lack of training. In the most serious cases, disabled children"s quality of life has been misjudged, leading to tragic outcomes.
Families with disabled children needing specialist health services such as equipment or wheelchairs also face battles. Parents tell of waiting years to receive a wheelchair that meets their child"s needs, with the child having out- grown the chair by the time it is delivered. Entitlement to specialist equipment is described as "a complete postcode lottery".
"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 is calling on the Department of Health and PCTs in England to implement the following priority recommendations:
- The Department of Health should inform PCTs that their annual Operating Plans will not be agreed unless they demonstrate that their spend on disabled children"s services and children"s palliative care services reflects national policy expectations.
- Every PCT should have a named lead at a strategic level responsible for services for disabled children, including children with complex health needs and children with palliative care needs, by December 2009.
- Every PCT should publish information on the additional funding they have allocated locally for each financial year (2008-2011) to disabled children"s services, separately identifying short breaks, children"s community equipment, children"s wheelchairs and children"s palliative care.
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."
Every Disabled Child Matters