An NHS investigation into the deaths of 13 patients with learning disabilities has found that failures to provide adequate, safe and prompt care contributed directly to their deaths.
Detailed studies of 103 deaths in 2016-17 by the NHS Learning Disabilities Mortality Review found that in 13 instances the person’s health had been adversely affected by treatment delays, poor care, neglect or abuse.
The review was set up in 2015 in response to concern over repeated failings in the care of learning disabled patients, including the death of 18-year-old Connor Sparrowhawk, who drowned in a bath while in the care of an NHS unit in 2014.
The review found that, overall, the life expectancy of people with a learning disability lagged far behind a person in the general population – 23 years for men and 29 years for women.
It said there was a need for further action to improve the experiences and health outcomes of people with learning disabilities using NHS and care services.
In March, a judge called Connor’s death an “unnecessary human tragedy” after imposing a £1m fine on Southern Care NHS trust for systemic failures and health and safety breaches.
Although the detailed studies carried out by the review identified 189 “learning points” to improve NHS practice, it noted that these echoed previous reports into deaths of people with learning disabilities “with the same issues identified as problematic over the past decade or so”.
Commenting on the review, Sara Ryan, Connor’s mother, told the BBC: “We have so much evidence now of a complete dismissal of the human-ness of people labelled with learning disabilities and … I don’t actually want to live in a society in which this just goes on and the government does nothing about it.”
The review, part of a three-year programme carried out by the University of Bristol, examined 1,311 deaths reported to it over a 16-month period to the end of November 2017. Of these, 103 were subjected to detailed investigations.
Serious failures identified by the review included:
- a man discharged with a catheter despite his home care staff having no training in catheter care. He was readmitted to hospital with a possible urinary infection that led to a “rapid decline in health”.
- A man whose urology care stopped when he was 18. Lack of coordination between services meant he had no follow-up care for eight years, during which he developed a large kidney stone that “was the main cause of his death”.
The review sets out nine recommendations to improve care, including mandatory awareness training for NHS staff and the appointment of a named health care coordinator for all learning disabled people with two or more long-term health conditions.
A spokesperson for the Department of Health and Social Care said: “We’re committed to reducing the number of people with learning disabilities who die young. That’s why we have introduced a new legal requirement so that from July every trust will have to publish data on case reviews of deaths of people with learning disabilities, and provide evidence of learnings and improvements.
“Clearly there is still more work to do – NHS England must ensure they take forward the recommendations of their world-leading review.”
Chris Hatton, professor of public health and disability at Lancaster University, said: “This report highlights yet again the fatal consequences of poor or absent support for people with learning disabilities. There is compelling evidence here for a permanent, national, mandatory deaths review programme.”
Kamran Mallick, chief executive of Disability Rights UK, said: “We need to see some real action and real change, and commitment from politicians and organisations to drive the recommendations made in the report. It’s time to stop treating learning disabled people as third-class citizens.”
