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People with learning disabilities and autism in England are dying almost 20 years younger than the rest of the population, a long-awaited report has said.
The annual mortality review commissioned by NHS England was originally meant to be published last year but faced repeated delays.
It found 39% of deaths of people with learning disabilities and autism were classed as avoidable in 2023, almost twice as high as the general population.
NHS England said it was rolling out more training for staff and identifying patients with learning disabilities earlier so they can be given more appropriate care.
The charity Mencap says about 1.5 million people in the UK have a learning disability which it defines as a lifelong reduced intellectual ability, usually identified soon after birth or in the early years.
The Learning Disabilities Mortality Review (LeDeR) was created in 2015 to try to understand why so many in that group were dying younger than the wider population and from avoidable causes.
The latest research, led by a team at King’s College London, looked at data from the deaths of 3,556 adults in 2023 and compared it to previous years.
It found that while there had been some improvements, with life expectancy increasing slightly to 62.5 years old, those with learning disabilities and autism were still experiencing significant inequalities.
“These stark new figures show people with a learning disability are dying a shocking 19.5 years younger than the general population,” said Mencap’s chief executive Jon Sparkes.
“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.”
In 2023 the most common causes of avoidable death in people with learning disabilities were influenza, pneumonia, cancers of the digestive tract and heart disease.
‘Hard to live with the knowledge’
David Lodge, 40, lived with multiple learning disabilities including autism, dyspraxia and dysarthria, which prevented him speaking.
In January 2022 he was taken to Hull Royal Infirmary after he was found severely dehydrated on the floor next to the body of his father Peter who had collapsed and died unexpectedly.
His sister Dr Keri Lodge, a consultant psychiatrist, said there was an “overwhelming lack of urgency” when her brother arrived at hospital.
“Any other 40-year-old man who had not drunk or eaten anything for days would be treated very quickly but with David there was none of that,” she said.
“There was just this sense of: ‘We will put you in this side room and keep you away.'”
A later inquest heard there were multiple failings in David’s care.
He was not offered pain relief, basic examinations were not carried out, and he was transferred to an acute admissions unit instead of intensive care, where he died hours later.
“They were side-tracked by the fact he had a learning disability,” said Dr Lodge.
“I think he would have been treated very differently if that wasn’t the case and it’s so hard to live with that knowledge.”
A spokeswoman for Humber Health Partnership, the NHS trust which runs the hospital, apologised to the family and said its processes have been changed to ensure patients with learning disabilities receive compassionate treatment at all times.
‘Not enough progress’
The latest report found 37% of deaths of people with learning disabilities or autism involved some form of delay in care or treatment, while 28% reported instances where diagnosis and treatment guidelines were not met.
Andre Strydom, the report’s chief investigator and a professor in intellectual disabilities at King’s College London, said progress had been made by the NHS in some areas but there was a need for initiatives such as annual health checks and better support for patients with learning disabilities who are admitted to hospital.
Richard Keegan Bull, a research assistant with a learning disability from Kingston University who helped produce the report, told the BBC he found the findings “really upsetting”.
“People [with learning disabilities] are still dying quite young in hospitals and are not getting the right support and care,” he said.
“It could be me or it could be somebody I know and I want these deaths to be taken really seriously.”
An NHS spokeswoman said the report showed progress was being made but it was clear more needed to be done to meet the needs of people with learning disabilities.
“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 cared for appropriately when getting NHS support,” she added.
In a statement to the House of Commons, health minister Stephen Kinnock described the difference in life expectancy for those with learning disabilities as “unacceptable” but said the number of case reviews which identified good NHS practice had increased by 10% since 2021 and he was committed to driving further improvements.