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 while in hospital following a stroke leaving him too weak to undergo surgery. He died in 2005
  • Emma Kemp, 26, whose family 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 co-operate with treatment. She died in 2004
  • Mark Cannon, 30, died in 2003 eight weeks after being admitted to hospital with a broken leg. He waited three days to see the pain team.
  • Ted Hughes, 61, collapsed and died the day after being released from hospital
  • Tom Wakefield 20, who was given no care for stomach pains and 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.”

Dame Jo Williams, Mencap’s chief executive, said people with a learning disability continued 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,” she said. “It is an outrage that the solutions to this problem have long been recognised, and yet action has not been taken.”

She welcomed the inquiry into the six deaths but said a further “long promised” confidential inquiry was still needed to investigate the extent of the problem. “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 major improvements to the investigation of complaints against the health service The charity says a 2001 White Paper admitted that people with learning disabilities face inequalities. 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.

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.”

Dr Vivienne Nathanson, the British Medical Association’s head of ethics, welcomed the independent inquiry. “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,” she said.