Page last updated at 12:35 GMT, Tuesday, 29 July 2008 13:35 UK

Disabled 'face suffering in NHS'

Martin Ryan
Martin Ryan's family say they were ignored

People with learning disabilities are suffering and even dying as laws to protect them are ignored by the NHS in England, says an inquiry report.

The independent inquiry, launched after the deaths of six patients, called for tougher inspections and more training for staff.

However, it said new laws to ensure equal access were not needed.

Learning disability charities welcomed the report - but one said there was a danger little action would be taken.

The challenge is to make it work as effectively for people with learning disabilities as anyone else
Sir Jonathan Michael
Inquiry Chairman

The inquiry was chaired by Sir Jonathan Michael, a former chief executive of Guy's and St Thomas' NHS Foundation Trust.

It was established following a report by the charity Mencap, published in March 2007, which highlighted six specific cases.

The inquiry was tasked with examining the treatment of people with learning disabilities in the NHS across England.

Sir Jonathan said that existing guidelines and laws - such as the Disability Discrimination Act - aimed at making sure that people with learning disabilities got equal treatment were not being followed.

He said: "We do not need a new framework - the legislation is already in place.

"The challenge is to make it work as effectively for people with learning disabilities as anyone else, and I know that there are many examples of good practice to show us the way."

The inquiry recommended that hospital trusts should have to show they had taken the needs of people with learning disabilities into account when planning services, making "reasonable adjustments" where required.

Healthcare inspectors should be given the job of assessing this, it said. It also called for the setting up of a "National Confidential Inquiry" to monitor the response of the NHS in future years.

'Death by indifference'

Dame Jo Williams, Mencap's chief executive, said: "It proves that people with a learning disability are being discriminated against in the NHS, which is leading to unnecessary pain and death.

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
Alison Giraud-Saunders
Foundation for People with Learning Disabilities

"It is clear that there is a desperate need for mandatory learning disability training for all health care professionals, and for people with a learning disability and their families and carers to be at the centre of all decisions made surrounding their healthcare."

Mencap's own report, "Death by indifference", included the cases of Martin Ryan, a 43-year-old with Down's syndrome and autism who died after going without food for 26 days while in hospital following a stroke.

His mother Anne said: "They did not listen to us, and we knew Martin better than anybody. We were totally ignored."

Other cases highlighted included that of Emma Kemp, of Newbury, Berkshire, who, despite being given a 50% chance of survival after a cancer diagnosis, was not treated immediately after doctors said she would not co-operate.

Also featured was Mark Cannon, a 30-year-old with a learning disability, died in 2003 eight weeks after being admitted to hospital with a broken leg.

His father, Allan, said at the time of the Mencap report, that he believed his son would have survived were it not for his disability.

"The medical staff had such poor understanding of Mark's needs," he said.

All six cases have also been investigated by the Health Service Ombudsman, which is expected to deliver its findings later in the year.

Response promised

Alison Giraud-Saunders, from 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."

Mark, who died aged 30
Mark Cannon died after being admitted to hospital with a broken leg

Disability charity Scope said disability equality training should be made compulsory for all NHS staff.

Jon Sparkes, chief executive, said: "Too often disabled people face discrimination from within the health service for a number of reasons - from ignorance about their impairment to outright prejudice."

Health Secretary Alan Johnson said that a full response to the inquiry's recommendations would be published later this year.

He said: "Any substandard treatment of people with learning disabilities in healthcare is completely unacceptable and I am determined to make sure we do everything we can to eliminate it."


SEE ALSO
'The NHS failed my daughter'
12 Mar 07 |  Health

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