A new investigation has uncovered evidence that NHS failings have caused or contributed to the deaths of more than 70 people with learning difficulties.
The charity Mencap, which collaborated with the investigation by the Guardian newspaper, said the cases highlighted the “continued discrimination” within the NHS.
As well as 74 deaths, there were another 17 “serious incidents”, with families alleging that the incidents were caused by “hospital blunders, poorly trained staff and indifference”.
The new investigation comes more than four years after the publication of Mencap’s Death by Indifference report, which revealed evidence that people with learning difficulties were dying unnecessarily due to “institutional discrimination” within the NHS.
In 2008, Sir Jonathan Michael’s inquiry into access to healthcare for people with learning difficulties – set up in response to Death by Indifference – found “convincing evidence” that they had “higher levels of unmet need and receive less effective treatment”.
The Labour government finally set up a confidential inquiry into “premature and avoidable” deaths of people with learning difficulties in 2010, 10 years after it first noted concerns in its Valuing People white paper.
Of the cases highlighted this week by the Guardian, 59 happened within the last five years.
Andrew Lee, director of People First Self Advocacy, which is run by people with learning difficulties, said he was “not surprised” by the report.
He said: “It is something that society has tried to sweep under the carpet. The training that health professionals get is non-existent when it comes to working with patients with learning difficulties.
“They don’t meet and talk with people with learning difficulties and the health professional bodies have only within the last couple of years started thinking about doing some training and involving people. Our whole health system needs a big reality shock.”
He said he was particularly concerned about the issue of “do not resuscitate” orders being “slapped on” the files of patients with learning difficulties.
He said: “The problem is around their assumption that our quality of life is less than people without learning difficulties.”
David Congdon, Mencap’s head of campaigns and policy, said the cases were an “appalling catalogue of neglect and indignity” and showed that health professionals were “still making the same errors that we highlighted in our Death by Indifference report”, with advice from families ignored and serious illnesses not diagnosed.
Some health professionals were “failing to recognise pain and distress” and to provide basic nursing care, with some leaving patients dehydrated and without food.
He added: “If attitudes and training aren’t overhauled across the board, people will continue to die needlessly.”
Among its recommendations, Mencap wants training for all health professionals on their duties under the Equality Act and the Mental Capacity Act.
It wants regulatory bodies, such as the General Medical Council, to conduct “rigorous investigations and deliver appropriate sanctions” if health professionals have clearly failed in their obligations to patients with learning difficulties.
Mencap is also calling on all hospitals to sign up to its Getting it Right charter, which spells out what healthcare professionals should do to ensure equal access to health.
Paul Burstow, the Liberal Democrat care services minister, said the government shared Mencap’s concerns that some people with learning difficulties were “not receiving the high quality health care that they should expect”.
He said the Department of Health had extended the contract for the inquiry into premature and avoidable deaths and was funding a “public health observatory”, which was focussing on improving health care for people with learning difficulties.
Sir Bruce Keogh, medical director of the NHS in England, said: “One of the measures of a civilised society is how well it looks after the most vulnerable members of its society.
“So I take very seriously any evidence that this is not reflected in our NHS. I look forward to seeing the Mencap report.”
5 January 2012