People with learning disabilities at the Tower Drive Daycare Centre in Milton Keynes. An inquiry found 1,200 people with a learning disability die early a year because of poor care in the NHS Photograph: Graham Turner for the Guardian
Ministers have refused to create a national body to investigate the 1,200 premature deaths a year of patients with learning disabilities in the NHS – a key recommendation of a three-year confidential inquiry – drawing fire from campaigners and the government’s own researchers.
The confidential inquiry, set up at the end of the last Labour government, found that patients with a learning disability experience delays in diagnosis, delays in treatment, lack of basic care and poor communication by doctors and nurses.
Carried out by Bristol University academics and funded by the Department of Health, the inquiry “highlighted the unacceptable situation in which people with learning disabilities die, on average, 16 years sooner than people without learning disabilities”. Almost two-fifths – 37% – of deaths of people with a learning disability were due to them not getting the right care.
The inquiry team had asked the government to set up a national review board on the deaths of people with learning disabilities, and to examine a random selection of deaths as well as those of people who die young or who die unexpectedly.
However, in their response to the inquiry, ministers have refused to create such a body, arguing that it needed to weigh up the costs and benefits of the agency.
Instead the government has said it will give “greater voice” to people with learning disabilities and support the spread of personal budgets so patients could purchase better care.
This drew an angy response from campaigners, who said the death toll for patients with learning disabilities was comparable to that said to have taken place at Stafford hospital.
Dan Scorer, campaigns manager at learning disability charity Mencap, said: “Independent research shows that over 1,200 children and adults with a learning disability continue to die unnecessarily every year in England because of discrimination in the NHS. This is the equivalent of a scandal on the scale of Mid-Staffordshire every year for people with a learning disability. The lack of decisive leadership by the government shows a continued failure to place equal value on the lives of people with a learning disability.
“A delayed commitment by the government to set up a national body to monitor and investigate the deaths of people with a learning disability is a lost opportunity to learn from mistakes and stop this tragic waste of life. Furthermore, it is utterly disrespectful to the families of those who have lost their lives due to poor NHS care.”
The principle investigator of the confidential inquiry, Pauline Heslop of Bristol University, also cautioned that the seriousness of the issues raised by her report required “more immediate actions … which are largely missing from the Department of Health commitments”.
She said: “We cannot allow the situation to continue in which people with learning disabilities are dying from causes of death amenable to good quality healthcare. That needs tackling with some urgency, and urgency of action appears to be lacking in the Department of Health response.
“In particular, we are disappointed that the Department of Health has not agreed to a national mortality review body to review future deaths of people with learning disabilities.”
Launching the government’s response, care and support minister Norman Lamb said: “Good, high-quality care should be expected for everyone. We wouldn’t accept this kind of poor care for cancer patients, so there is no reason why it is acceptable for people with learning disabilities.
“We are making progress on improving standards of care, but we have to go further and keep driving forward our plans.”