Annette Brooke MP supports campaign to improve disabled children's health services
July 3, 2009 11:20 AM
Mid Dorset and North Poole MP Annette Brooke attended a Parliamentary reception this week to highlight the failure of the NHS to meet even the basic needs of disabled children, including those with palliative care needs.
Annette was showing her support for improving disabled children's health services and took the opportunity to talk with disabled children and their families, as well as representatives from Primary Care Trusts, local authorities and voluntary organisations.
The event was organised by the Every Disabled Child Matters (EDCM) campaign to launch its new campaign report, 'Disabled Children and Health'.
The report highlights challenges across a range of health services. Families with disabled children needing specialist health services such as wheelchairs face battles in trying to receive a wheelchair that meets their child's needs - sometimes waiting years - with the child having out-grown the chair by the time it is delivered.
Annette said; 'Entitlement to specialist equipment, like wheelchairs is 'a complete postcode lottery'.
Lavinia Scott, a disabled young person called on doctors and other health workers to listen to young people and their parents. 'They don't always listen when you first say something is wrong! Then they come back to you when it is too late to tell you what you already knew.'
One parent of a child with a rare and life-limiting condition who requires 24-hour care told the campaign:
'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 the health services tell us they can't provide it because it is a family support service. '
EDCM will be writing to government Ministers and Primary Care Trusts asking them to respond to the recommendations in Disabled Children and Health.
Everyone, like Annette who cares about disabled children and their families can sign up to support the Every Disabled Child Matters campaign at www.edcm.org.uk
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