Patients With Learning Difficulties Dying Unnecessarily, Inquiry Finds

People with learning disabilities face unnecessary suffering and even death because of failings in the health service, an independent report warns.
Patients are being ignored and their conditions left undiagnosed or untreated because some parts of the NHS see only their disability and not their illness, the results of a year-long inquiry ordered by the Government concluded.

It recommends that all of the 1.5 million Britons with learning disabilities should receive a check up from their GP at least once a year, to pick up underlying health problems.

Health service staff should also receive extra training on how to treat people with learning disabilities.

The inquiry was ordered by ministers last year after a report by Mencap, the charity, highlighted a number of cases involving patients with learning disabilities, including that of Emma Kemp, from Newbury.

Her family claim that she did not receive any treatment for cancer, despite being given a 50 per cent chance of surviving the disease, because it was judged that she would be uncooperative.

She died a few weeks later at the age of 26.

Also highlighted was the experience of a 43-year-old stroke victim who went without food in a hospital for 26 days.

Because he could not speak, staff did not realise what was happening. He also later died.

The cases “were not isolated incidents”, the report, published today, concluded.

Sir Jonathan Michael, a former chief executive of Guy’s and St Thomas’ hospital trust in London, who led the inquiry, said: “It is clear what the NHS should be doing.

“The challenge is to make the health service as accessible to people with learning disabilities as it is to the rest of us.”

All organisations across the NHS should provide patients with learning disabilities “reasonably adjusted” services, to take account of their extra needs, he said.

He added that ministers and individual local health organisations could make significant improvements “within 12 months” if they implemented many of his proposals.

These include steps such as increasing the amount of “easy to read” health information available to people with learning disabilities and offering them longer appointments with their GP.

A spokesman for the Department of Health said that officials had begun discussions with the British Medical Association, the doctors’ union, about the possibility of offering annual health checks from next year.

But the Conservatives said that ministers should have introduced the checks when concerns were first highlighted.

Stephen O’Brien, the shadow health minister, said: “The Government acknowledged the effectiveness of annual health checks over seven years ago but they are still dithering over their implementation.

“The Government should make it a priority to help the most vulnerable but as in so many areas, the inequality gap remains unacceptably high”.

Dame Jo Williams, chief executive of Mencap, said: “The findings and recommendations will bring some comfort to the families in Mencap’s Death by Indifference report, who bravely told their stories to highlight the widespread discrimination and ignorance.”

Alison Giraud-Saunders, co-director of the Foundation for People with Learning Disabilities, warned that the recommendations were too important to be ignored.

She 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.”