Learning disabled people die more than 16 years earlier than other people on average, in part because of inadequate healthcare and unequal access to services, a three-year study has found.
The findings were described as a “wake-up call” by the Bristol University research team behind the Confidential inquiry into premature deaths of people with learning disabilities, who examined the deaths of 247 people with learning disabilities in South West England from 2010-12
The median age of death for people with learning disabilities was 65 for men, compared with 78 for the UK population, and 63 for women, compared with 83 for the UK population. Overall, 22% of people with learning disabilities died before the age of 50, compared with 9% of the general population.
Unequal access to healthcare
The inquiry also compared a subset of 58 of the 247 people against a comparator group of 58 people without learning disabilities who otherwise shared comparable characteristics. It found significantly more people with learning disabilities experienced difficulties in the diagnosis and treatment of their illness than the comparator group, and all aspects of their care provision, planning, co-ordination and documentation was less good.
It concluded people with learning disabilities were more likely to die of causes that could have been potentially addressed through good-quality healthcare, while the comparator group were more likely to die of lifestyle-related illnesses.
“This report highlights the unacceptable situation in which people with learning disabilities are dying, on average, more than 16 years sooner than anyone else,” said lead author Dr Pauline Heslop, senior research fellow at Bristol University’s Norah Fry Research Centre. “The cause of their premature deaths appears to be because the NHS is not being provided equitably to everyone based on need. People with learning disabilities are struggling to have their illnesses investigated, diagnosed and treated to the same extent as other people. These are shocking findings and must serve as a wake-up call to all of us that action is urgently required.”
The report made several recommendations, including:
- A named healthcare co-ordinator to be allocated to people with complex or multiple health needs;
- Mental Capacity Act training and regular updates to be mandatory for staff in health and social care;
- Patient-held health records to be given to all patients with learning disabilities with multiple health conditions;
- Reasonable adjustments required by and provided to individuals to be audited annually and best practice shared across agencies;
- A national learning disability mortality review body to be established to monitor deaths among the group.
The government commissioned the study into premature deaths in 2009 on the back of Jonathan Michael’s independent inquiry into the healthcare of people with learning disabilities, which found the group found it much harder than others to access healthcare and NHS staff lacked knowledge of learning disability.
The Michael inquiry, which reported in 2008, had itself been prompted by Mencap’s 2007 Death by indifference report, which highlighted the cases of six people with learning disabilities whom the charity said had died prematurely because of poor NHS care.
Mencap, which has long campaigned against the role of poor healthcare of people with learning disabilities in premature deaths, welcomed the research, and backed the study’s recommendation on government to establish a body to investigate and monitor deaths among the group.
Case study: Mark Cannon
The six people highlighted in Death by indifference included Mark Cannon, who 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.
A joint report by 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.Mithran Samuel is Community Care’s adults’ editor.