Support for disabled children’s health services

Heywood and Middleton MP Jim Dobbin attended a Parliamentary reception last week to show his support for improving disabled children’s health services.

The event was organised by the Every Disabled Child Matters (EDCM) project to launch its new campaign report, ‘Disabled Children and Health’.

The campaign highlights the failure of the NHS to meet even the basic needs of disabled children, including those with palliative care needs.

Over 80 MPs attended the event and took the opportunity to talk to disabled children, and their families, representatives from Primary Care Trusts, local authorities and voluntary organisations.

Speakers at the event included Lavinia Scott, a disabled young person. Lavinia called on doctors and health workers to listen to young people and their parents. She said: "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."

EDCM’s campaign report highlights challenges across a range of health services.

Disabled children face barriers accessing universal health services such as GPs and dentists; this is 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 told 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".

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 services 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.”

EDCM will be writing to government Ministers and Primary Care Trusts asking them to respond to the recommendations in Disabled Children and Health.