Learning disability deaths probe

An independent inquiry is to be launched after a charity highlighted six deaths of people with learning disabilities in NHS care.

Mencap's report says there is widespread ignorance in the NHS which has resulted in "institutional abuse". In each case, there are concerns the necessary care was not given because of the person's disability.

The Department of Health said the inquiry would also look at the national implications of the cases. Mencap says the NHS staff who were looking after the six cases may not have consciously discriminated against the patients, but that there is a lack of training and understanding of how to care for people with learning disabilities.

The cases described in Mencap's report are:-

Martin Ryan, 43, who went without food for 26 days whilst he was in hospital following a stroke leaving him too weak to undergo surgery. He died in 2005

The family of Emma Kemp, 26, were told she had a 50:50 chance of survival after being diagnosed with cancer, but doctors decided not to treat her as they believed she would not cooperate with treatment. She died in 2004

Mark Cannon, 30, died eight weeks after being admitted to hospital with a broken leg. He waited three days to see the pain team. He died in 2003

Ted Hughes, 61, collapsed and died the day after being released from hospital

Tom Wakefield 20, was given no care for stomach pains. He died of pneumonia and reflux problems in 2004

Warren Cox, 30, died in 2004 following perforation of the appendix. His parents were told he had a virus

Mark's father, Allan, said: "I believe that if my son had not had a learning disability, he would still be with us today. The discrimination and indifference my family faced was shocking.

"The medical staff had such poor understanding of Mark's needs. Lessons must be learnt from my son's death, so that nobody has to go through the torture of losing a loved one as a result of discrimination."

Dame Jo Williams, Mencap's chief executive, said: "We are deeply disturbed that three years on from Mencap's Treat Me Right report which exposed inequalities within the NHS, people with a learning disability continue to receive worse healthcare than those without a disability. Despite government recognition of the inequalities experienced by people with a learning disability within NHS care, there has been no commitment to tackle them. It is an outrage that the solutions to this problem have long been recognised, and yet action has not been taken."

She said an urgent independent inquiry was needed. "We want the underlying bad practice, which we believe is a result of poorly designed systems, policies and procedures within the NHS, to be identified and acted upon. If action is not taken to eliminate institutional discrimination from our health services, people with a learning disability will continue to die unnecessarily."

Mencap is also calling for a "long promised" confidential inquiry into premature deaths of people with a learning disability to be carried out and for major improvements to the investigation of complaints against the health service

The charity says that a 2001 White Paper admitted that people with learning disabilities face inequalities - but no action has been taken.

And it says recent cases of 'institutional abuse' found at NHS primary care trusts in Cornwall and Sutton and Merton, which included physical and sexual abuse, show discriminatory practices still exist within the NHS. A Disability Rights Commission investigation last year found people with learning disabilities were less likely to receive the healthcare they need.

Heath Secretary Patricia Hewitt, who is due to meet the families involved in the cases, said: "I was shocked to hear of these findings concerning people with learning disabilities, particularly in light of the other cases that have come to my attention over the past year, such as the disturbing events in Cornwall and at Sutton and Merton PCT. It is obvious that while parts of NHS delivers excellent care to people with learning disabilities, there are other areas that do not reach this necessary standard. This is why I am setting up an independent inquiry to ensure we learn the lessons from this and that the NHS and others take all the necessary steps to ensure people with learning disabilities get the quality of care they need."

Mencap welcomed the inquiry into the six deaths but said there a further confidential inquiry was still needed to fully investigate the extent of the problem.

Dr Vivienne Nathanson, the British Medical Association's head of ethics, said: "This report is extremely worrying and we are pleased that the health secretary has agreed to set up an independent inquiry to look into the issues raised. People with learning disabilities and/or mental health problems have every right to the same level of healthcare as the rest of the population and as doctors, we believe it is unacceptable for their needs to be ignored."