Sector leaders have slammed the government for a lack of action in tackling premature deaths among people with learning disabilities, after an inquiry found they died 16 years earlier than other people on average.
Charity Mencap said it was “hugely disappointed” that the Department of Health had not agreed to set up a national review body to learn lessons from the deaths of learning disabled people, as recommended by the three-year Confidential inquiry into premature deaths of learning disabled people.
The Bristol University inquiry, which reported in March, assessed 42% of 238 deaths of people with learning disabilities it examined as premature, most commonly due to delays or problems in diagnosis or treatment and problems with identifying needs or responding to changing care needs. It said a national learning disability mortality review body should be established to ensure lessons are learned from reviews into deaths of learning disabled people and “provide a driver to reduce inequalities in care for this vulnerable population”.
However, in its response to the inquiry, published last week, the Department of Health said such a body could not be set up without “careful consideration” and that NHS England would carry out an assessment of the costs and benefits by next March.
Research commissioned by Mencap found over 1,200 children and adults with a learning disability die unnecessarily every year in England because of discrimination in the NHS.
‘Scandal on scale of Mid-Staffordshire’
“This is the equivalent of a scandal on the scale of Mid-Staffordshire every year for people with a learning disability,” said the charity’s campaigns manager, Dan Scorer. “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 DH accepted many of the 18 recommendations of the inquiry. However, the National Development Team for Inclusion (NDTi) also expressed concern about a lack of action from government in responding to the inquiry. The NDTi is part responsible for the government-commissioned Learning Disabilities Public Health Observatory, which provides information on the health of and health inequalities faced by people with learning disabilities.
‘Lack of urgency’
“It is disappointing that the response lacks any urgency in addressing many of the recommendations, when people are dying from causes that can be prevented by good quality healthcare urgent action is required,” said NDTi chief executive Rob Greig, formerly the DH’s learning disability director.
“Specific time frames are needed to prevent too many people with learning disabilities dying unnecessarily for the want of quality healthcare.”
The DH also published a progress report last week on its response to the 2009 Six Lives report by the health and local government ombudsmen into the deaths of six people with learning disabilities previously highlighted by Mencap.
The progress report said the number of health checks carried out on people with learning disabilities rose from 73,000 to 86,000 from 2010-11 to 2011-12, but this was just 53% of those identified as eligible for a check.
Care services minister Norman Lamb said: “It is not good enough that people with learning disabilities are at a greater risk of dying earlier due to poor healthcare. We are making progress on improving standards of care, but we have to go further and keep driving forward our plans.”
Case study: Mark Cannon
Mark Cannon died aged 30 in 2003, after contracting an infection and suffering a heart attack. He had been admitted to hospital after breaking his thigh bone following a fall during a short stay in a care home run by Havering Council in London.
In their Six Lives report, the local government and health services ombudsmen concluded his original injury was preventable, and his death could possibly have been avoided had Barking, Havering and Redbridge Hospitals NHS Trust provided appropriate care and treatment.
Both the trust and Havering Council apologised to his family for the failings and paid compensation. Read the ombudsmen’s report of Mark Cannon’s case.