The shocking deaths of six patients with learning disabilities who suffered appalling neglect at the hands of the NHS were "not isolated incidents", an inquiry has concluded.
The deaths of the five men and one woman, highlighted in a report last year, were symptomatic of a wider malaise in the health service which has failed to ensure people with learning disabilities get proper treatment in accordance with the law, the inquiry found. The six cases which triggered the inquiry were described in a report, Death by Indifference, published by Mencap last March. The cases included Martin Ryan, 43, who went without food for 26 days after suffering a stroke and Emma Kemp, 26, who was given a fifty-fifty chance of survival after being diagnosed with cancer but was denied treatment as doctors thought she would be unco-operative.
The health secretary at the time, Patricia Hewitt, ordered an immediate independent inquiry into the allegations which Mencap said revealed "widespread ignorance and indifference" in the NHS to people with learning disabilities.
Yesterday's report of the inquiry provided complete vindication for Mencap, upholding its allegations. The charity said it had since received 20 further reports of patients who have died as a result of neglect in NHS institutions, and 15 serious incidents.
Sir Jonathan Michael, who chaired the inquiry, said he had been dismayed by what it uncovered. "It was shocking to find that the experiences in the Mencap report were not isolated," he said. "People with learning disabilities have worse health and find it harder to access services than the rest of the population. They experience unnecessary suffering and deaths are occurring that could have been prevented. Staff are doing their best but the service is not making the reasonable adjustments [to meet the needs of people with learning disabilities] that the law requires."
The report calls for annual health checks for the 1.5 million people with learning disabilities in the UK, in order to pick up early signs of illness that they may be unable to communicate. Tougher inspection, better training and improved management are needed to ensure people with learning disabilities get equal treatment in line with laws such as the Disability Discrimination Act which are already in place, the report said.
"'Equal' does not mean 'same'," said Sir Jonathan. "Services need to make adjustments to ensure equal treatment is delivered in circumstances where it may be harder to provide. People with learning disabilities are often invisible and their families are often not heard. Changes are needed in the NHS from top to bottom. Good services are not costly but they are too thinly spread. We do not need a new law but we do need to make the NHS work as effectively as for everyone else."
The report details examples of neglect reported by witnesses, including a 40-year-old man taken to A&E with chest pains who was sent home without tests and died of a heart attack; and a GP who refused to treat a man for a cataract on the grounds that "he can see out of his other eye".
Dame Jo Williams, the chief executive of Mencap, said the report would bring comfort to the families of those who died, "who bravely told their stories to highlight the widespread discrimination and ignorance". "It is clear that there is a desperate need for mandatory learning disability training for all healthcare professionals, and for people with a learning disability and their families to be at the centre of all decisions made surrounding their health care," she added.
The Tory' health spokesman, Stephen O'Brien, said the Government had accepted that health checks were the best way to improve the health of people with learning disabilities in 2001, but had not done anything about it. "The Government are still dithering over their implementation," he said. "They should make it a priority to help the most vulnerable."
The Health Secretary, Alan Johnson, said a full response to the inquiry report would be published later. "Any substandard treatment of people with learning disabilities is completely unacceptable and I am determined to make sure we do everything we can to eliminate it," he said.
The six deaths
MARTIN, 43
Went without food for 26 days while he was in hospital following a stroke. By the time staff realised what was happening, he was too weak to be helped. Martin died on 21 December 2005. He had a severe learning disability and no speech.
EMMA,26
Died of cancer on 25 July 2004. Doctors told her she had a fifty-fifty chance of survival, but decided not to treat her as they believed she would not cooperate. She had a severe learning disability, which meant she sometimes exhibited challenging behaviour and had difficulty in communicating how she felt when she was upset or scared.
MARK, 30
Died eight-and-a-half weeks after being admitted to hospital with a broken leg (femur). He was clearly distressed and in pain, screaming and banging his head, but he had to wait three days to see a specialist pain team. Mark died on 29 August 2003.
TED, 61
Discharged three weeks after being admitted for a minor operation, despite his condition having been assessed as "concerning" as staff did not want to meet his needs. He died the following day on 27 May 2004. He had a severe learning disability and had virtually no speech.
TOM, 20
A hospice consultant recommended Tom's pain be investigated by a gastroenterologist more than a year before he died. Tom's expressions of pain were not heeded and he died of pneumonia and reflux problems on 25 May 2004. He had profound and multiple learning disabilities.
WARREN, 30
Died following perforation of the appendix. His parents asked doctors whether he had appendicitis or a blocked bowel, and were told he had a virus. Warren died on 25 September 2004. He had a severe learning disability and very little speech, but could make himself understood to his family.
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