Over half of adults with learning difficulties do not live past 65, report says

More than half of adults with learning disabilities in England die before the age of 65, an annual report into mortality suggests.

For the general population, that figure is 15%, according to the Learning Disabilities Mortality Review, which is known as the LeDeR and was commissioned by NHS England.

It looked at deaths recorded between 2021 and 2024 and found those with a learning disability died, on average, 19 years younger than the general population.

A government spokesperson said "significant action" was already underway to improve care, adding that ministers would "do all we can for people with a learning disability and autistic people."

In a written ministerial statement, the government said the LeDeR findings were "stark", while learning disability group Staying Alive and Well said "far too many people with a learning disability are still dying too young" and that it should be "headline news".

The LeDeR found the proportion of avoidable deaths among those with learning disabilities, resulting from treatable conditions such as pneumonia or epilepsy, had "significantly declined" from 46% in 2021 to 39% in 2024, but remained almost double that of the general adult population.

The review was established in 2015 to examine the high mortality rates of people with learning disabilities and autism.

When deaths are registered with the review, it looks into the person's life, the healthcare they received, their cause of death and whether anything could have been done differently.

The subsequent report has been compiled by King's College London.

The Staying Alive and Well group, a panel of people with learning disabilities who are supported by researchers at Kingston University, said: "The numbers in this report are not just numbers for us. This is very real to us. This is about people. People dying too young: that could be us."

The group said people with learning disabilities could feel "discriminated against or not taken seriously" when they needed healthcare, which made them "angry and upset".

"Don't look away, however uncomfortable it makes you feel," they said.

"It may seem like we're not getting anywhere, but we want you to keep reporting and reviewing the deaths of people with a learning disability."

Members of the Staying Alive and Well group worked on the LeDeR report to help make it more understandable for people with learning disabilities

The government has confirmed Monday's report will be the final LeDeR publication in the current format, with future data due to be recorded alongside other health outcomes for people with autism and ADHD in England.

In the written ministerial statement, health minister Preet Kaur Gill said the statistics highlighted in the report were "unacceptable".

"I want to reassure you that we take them seriously," she said.

She said the government was "committed to improving outcomes" through early intervention, as well as focusing on training to improve the identification of people with a learning disability on GP registers, to ensure they attend health checks.

NHS England has said it will roll out a "reasonable adjustment digital flag" for all disabled people to ensure that adjustments are kept in their record.

The Royal College of Nurses has previously raised concerns about the number of health staff specialising in working with patients who have learning disabilities or autism.

In its own report, published earlier this summer, it said the number of specialist practicing nurses had fallen by 44% - from 7,000 to 4,500 - in just over a decade, and only 500 new recruits to learn the specialism had been taken on this year.

Jon Sparkes OBE, chief executive of learning disability charity Mencap, said he was concerned that ending the LeDeR report in its current form could mean the issue became "deprioritised".

"This is literally a matter of life and death, and risks undoing years of hard-won progress," he said.

"We urgently need to know how the government will maintain independent scrutiny and, importantly, understand and tackle the causes of avoidable deaths.

"People with a learning disability need to know their lives are valued."

For the family of Charlie Lander, the LeDeR is a crucial piece of work which highlights the health inequalities some people face.

Lander, who had severe learning disabilities and Pica syndrome - an eating disorder which leads to cravings for non-food items - died in hospital in June 2022 at the age of 48, after swallowing a plastic glove which caused a bowel obstruction.

A coroner found his death was "medical misadventure contributed to by neglect" and cited failings such as delays in treatment, incomplete observations, failure to escalate his care, and the fact he was alone when he died.

His mum Rosalie Lander said: "Charlie's death was avoidable, and we live with the pain of losing him needlessly like this every day.

"Words fail me about the care he didn't have. Urgent surgery to relieve the obstruction would have very likely saved his life."

After the inquest, Dr Mark Roland, chief medical officer at Ashford and St Peter's Hospitals NHS Foundation Trust, apologised for the failings in Lander's care.

"Our thoughts remain with Mr Lander's family and loved ones," he said.

He added that the trust was committed to reducing health inequalities for people with learning disabilities and had made significant improvements to care.

In a response to Monday's LeDeR report, a spokesperson for the Department of Health and Social Care said: "Our thoughts go out to all those who have lost loved ones and recognise that care for people with learning disability and autistic people needs to improve.

"Significant action is already underway to improve care. Over five million people have completed mandatory training, and along with new digital tools, improved data sharing and health check-ups, we will do all we can for people with a learning disability and autistic people."