LeDeR researchers apologise as republished report shows increased number of avoidable deaths

Researchers from the Learning from Lives and Deaths – People with a learning disability and autistic people (LeDeR) programme have apologised after the 2023 report had to be republished because of technical issues with the supplied data.

The new report published this week shows that 40.2% of deaths in 2023 were due to avoidable causes, up from the previously reported 38.8%. The researchers say this highlights the significant work that still needs to be done to address premature deaths among people with a learning disability.

Updated analysis also shows a change in mortality patterns for 2023. Diseases of the circulatory system are now identified as the most common cause of death, rather than respiratory diseases or neoplasms.

Charities and campaigners have reacted angrily to the updated report, saying the retraction has been deeply upsetting for affected families and must not happen again.

Technical issues wih cause of death data

The report was withdrawn after NHS England was informed of a technical issue within the cause of death data supplied by the South Central and West (SCW) Commissioning Support Unit that has impacted elements of the published annual report.

LeDeR summarises the lives and deaths of people with a learning disability and autistic people who died in England in annual reports. The report, which is produced for NHS England, was led by researchers from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London, the University of Central Lancashire, and Kingston University London.

The report published in September 2025 had already been heavily criticised for being nearly a year late, but the research team said it was necessary to republish it to ensure the information was accurate.

Over 300 deaths of loved ones were reported incorrectly

Jon Sparkes OBE, Chief Executive of learning disability charity Mencap, said: “The LeDeR programme exists because people with a learning disability and autistic people are dying far too young, often in circumstances that could and should have been prevented.

“It’s deeply worrying the 2023 report was significantly delayed, then published with serious errors and withdrawn. We now know around 300 reviews into deaths were reported incorrectly, leading to changes in the annual report’s England-wide findings on causes of death and avoidable deaths. This is deeply upsetting for families impacted and must not happen again.”

He added that questions must be asked about why Down syndrome is still being recorded as an ‘unavoidable’ cause of death, as it hides the real reasons people died, such as missed screening, late diagnosis or failures in basic care, and there would be outrage if other characteristics were used in this way.

Urgent action needed to improve LeDeR

The National Autistic Society also voiced its concern and said that republication of the LeDeR report will do little to reassure autistic people and their families that the Government is taking their lives seriously.

Joey Nettleton Burrows, Policy and Public Affairs Manager, said: “The Government, in a statement published with the report, said they are committed to reducing health inequalities and “understand the importance of timely and accurate information” to support this, yet they fail to recognise the serious mishandling of the original report, which was not only delayed by two years but then retracted in the weeks following its publication.

“The findings show that the largest cause of death for autistic people is suicide (31%). A relatively low number of reviews of autistic people are included in the report, so we are cautious about making conclusions. However, we know that without the right support, too many autistic people can develop mental health problems like anxiety or depression, ending in tragic situations. It is very disappointing that there are no national recommendations for driving improvement and increasing accountability within the report to prevent future deaths.

“The Government must demonstrate that they are truly committed to improving the lives of autistic people by learning from these findings and taking urgent action to improve LeDeR and creating the equal healthcare system that autistic people deserve.”

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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