Avoidable deaths among learning disabled adults still above general population

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The proportion of avoidable deaths among adults with a learning disability has fallen but is still almost double that of the general population, according to a new report.

Some 733 (38.8%) of the 1,887 deaths of adults with a learning disability and a known cause of death reviewed in 2023 as part of the report were classed as avoidable.

This was down from 43.0% in 2022 and 46.1% in 2021. But it remains above the 21.6% for the general population.

The latest Learning from lives and deaths report (LeDeR), showing new data for 2023 and published on Tuesday, was due out in about November last year but is understood to have been held up over “practical data issues”.

The LeDeR programme was established in 2015 in an effort to review the deaths of people with a learning disability and autistic people in England.

Annual reports summarise their lives and deaths to learn from what happened, improve care, reduce health inequalities and prevent people with a learning disability, and autistic people, from early deaths.

The latest report, led by researchers at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London (KCL), alongside the the University of Central Lancashire, and Kingston University London, analysed the deaths of 3,556 people, notified between January and December 2023.

Among its findings were that avoidable deaths – defined as occurring in someone under 75 because of a condition deemed to be preventable, treatable or both – remained higher in 2023 among people with a learning disability.

The avoidable deaths figures included autistic adults only if they also had a learning disability.

The most common causes of avoidable deaths were ‘flu and pneumonia – accounting for 14.9% of such deaths, followed by cancers of the digestive organs (9.7%) and coronary heart disease (9.5%).

The report also found that adults with a learning disability died on average aged 19.5 years younger than the general population in 2023.

The average age at death was 62.5 years – seven months older than in 2018.

The authors noted that average age at death is not the same as life expectancy, as the review only accounts for those who have died rather than those with learning disabilities who are still alive.

They also cautioned that there had been fewer completed reviews for the 2023 report “due to unforeseen pressures on the NHS”.

In total, 7% of adults notified to LeDeR in 2023 were from an ethnic minority group.

Adults from ethnic groups whose deaths were notified to LeDeR between January 2021 and December 2023 had a younger median age at death compared to white adults who died, the report said.

For that time period, the age at death for a white person was 63 years old, compared to 43.2 years old for someone from an Asian or Asian British background and 54.2 years old for someone from a black British, African, Caribbean, or black British background.

The report also included data on reviews completed into 127 deaths of autistic adults without a learning disability between 2021 and 2023.

The most common causes of death were suicide, misadventure, or accidental death, accounting for 29.1 of deaths.

However the authors said that due to the small numbers and the type of deaths notified to LeDeR, the data may not be representative of the whole population of autistic people.

Professor Andre Strydom, the report’s chief investigator and a professor at KCL, said: “Our analysis shows that there has been progress in some areas, but there is also a need for ongoing reporting of deaths of people with a learning disability and autistic people, and for initiatives such as annual health checks and support when people are admitted to hospital to reduce avoidable deaths.”

Jon Sparkes, chief executive of learning disability charity Mencap described the figures on younger deaths as “stark”.

He added: “People with a learning disability and their families deserve better. In this day and age, no-one should die early because they don’t get the right treatment.”

He said there is a “risk that the needs of people with a learning disability are overlooked” in the face of a narrowing of NHS focus to “a few key targets”.

Tom Purser, chief executive of Autism Action, said the data on deaths is “wholly inadequate, with no clear plans to improve it”.

He said: “While this data reinforces that suicide is a real problem for autistic people, it can tell us nothing more than that, making it worse than a tick-box exercise. Worse still, the Government uses this data as an example of how it is ‘doing something’ about the problem.

“It is simply not acceptable for the Government to commission poor quality data and then use that poor quality as a reason not to take action.”

Care minister Stephen Kinnock, in a written statement to Parliament, said it is “crucial we improve our understanding of deaths of autistic people” and that it is expected with “increased awareness of the ability to report these deaths, we can then take specific action to address issues raised”.

Of the overall findings, he said: “The latest report shows that on average, people with a learning disability die 19.5 years younger than the general population and are almost twice as likely to die from an avoidable cause of death. This is unacceptable.”

An NHS spokesperson said: “While this report shows encouraging progress, it is clear there is much more to do to meet the needs of people with a learning disability and autistic people.

“The NHS has rolled out training to more than three million health and care staff to improve the care offered to Learning Disability and Autism patients, and all disabled people have a ‘reasonable adjustment digital flag’ so they are recognised and care for appropriately when getting NHS support.

“The NHS also remains committed to reviewing every death that is notified to LeDeR to make sure lessons are learned to reduce avoidable mortality and health inequalities.”

Mr Kinnock added: “Together with NHS England and partners, we are committed to driving further improvements, implementing our 10-Year Health Plan and working towards healthcare that is equitable and provides the quality of care that people with a learning disability and autistic people should rightly expect.”