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People with learning disabilities face “avoidable suffering”

29 July 2008

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The health needs of people with learning disabilities are not being met by the NHS in England, says an independent inquiry citing evidence of a “significant level of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided.”

The inquiry, Healthcare For All, was led by Sir Jonathan Michael, a former chief executive of Guy’s and St Thomas’ NHS Foundation Trust, and sought to identify the action needed to ensure adults and children with learning disabilities receive appropriate treatment in acute and primary healthcare in England.

Published today (29 July 2008), the inquiry report found “a significant gap between policy, the law and the delivery of effective health services for people with learning disabilities.” It criticised “insufficient data, poor information about people with learning disabilities and shortcomings in training.”

It said: “Despite guidance on the delivery of effective healthcare, few primary care and acute services are aware that the guidance exists, and few are aware of best practice.”

While a report from the Department of Health (DH) showed that more than 98% of GPs are capturing summary data on patients with learning disabilities, the inquiry found that the overall number of people with learning disabilities recorded is around 0.3%, “corresponding to the number with profound and multiple disabilities in the population as a whole.”

It therefore concluded that “GPs seem to be recording only those at the most severe end of the spectrum who are easiest to identify, and people with mild and moderate learning disabilities do not appear to be being included.”

The inquiry report says that the DH should direct PCTs “to secure general health services that make reasonable adjustments for people with learning disabilities through a directed enhanced service.”

“In particular,” it says, “the Department should direct PCTs to commission enhanced primary care services which include regular health checks provided by GP practices and improve data, communication and cross-boundary partnership working.”

In response to the report, Alison Giraud-Saunders, Co-Director at the Foundation for People with Learning Disabilities, said: “While the report it is to be welcomed, it must not be allowed to join the growing pile of paper promises that people with a learning disability have become used to.

“Immediate action needs to be taken to implement the inquiry’s recommendations. One Strategic Health Authority set out comprehensive plans addressing the health needs of people with learning disabilities following on from Lord Darzi’s NHS review. We would like to see other Strategic Health Authorities follow this good example.

“This report is a blueprint for what needs to happen to end the difficulties many people with a learning disability face when trying to access the healthcare most of us take for granted. It’s completely unacceptable that anyone should be disadvantaged in our healthcare system simply because they have a disability.”

Inquiry website

Your comments: (Terms and conditions apply)

“The practice (or not all members of staff who need to know) do not necessarily know, which patient is suffering from learning disabilities, or adequate training in how to deal with those  cases. The problems faced by people suffering with learning disabilities has been highlighted in one of the conferences. Further advice would be appreciated” – Kirsten Hamilton, Weeton