LeDeR Annual Report 2023. Learning from lives and deaths: People with a Learning disability and autistic people (published September 2025)

Summary

The Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme, funded by NHS England and NHS Improvement, was established in 2017 to improve healthcare for people with a learning disability and autistic people. LeDeR aims to:

• Improve care for people with a learning disability and autistic people.
• Reduce health inequalities for people with a learning disability and autistic people.
• Prevent people with a learning disability and autistic people from early death.

This report, which is led by researchers at the Institute of Psychiatry, Psychology & Neuroscience at King’s College London, in partnership with the University of Central Lancashire, and Kingston University London, is produced on behalf of NHS England. It analysed the deaths of 3,556 people, notified between January and December 2023.

Content

The percentage of “avoidable deaths” — where death occurs in someone under the age of 75 to a condition deemed preventable, treatable, or both — has fallen from 46% in 2021 to 39% in 2023.

Professor Andre Strydom, the report’s Chief Investigator and a Professor in Intellectual Disabilities said, “Our analysis of this year’s data has once again established that the number of avoidable deaths in people with a learning disability has fallen. While this improvement is undeniably heartening, we cannot overlook the context, as the rate is almost double that of avoidable deaths in the general population (21 per cent).”

The analysis also found that 37% of cases reported some form of delay in care or treatment, while 28% reported instances where diagnosis and treatment guidelines were not met.

This year’s report placed a greater focus on the deaths of people with a learning disability from ethnic minority backgrounds, and those who had died and had a severe or profound learning disability.

Researchers found that, compared to those coming from White backgrounds, those from minority ethnic backgrounds had a significantly lower median age of death. Between January 2021 and December 2023, the median age of death in those from Asian and Asian British backgrounds reported a median age of death of 43 – a 20 year difference when compared to those from White backgrounds.

Further analysis found that, where 44% of people from White backgrounds were aged 65 and above when their deaths were reported, the same percentage of people from Asian backgrounds were in the 24 – 49 age category.

Researchers also analysed the data available for people with a severe or profound learning disability, approximately one third of the reported cases since 2021 fall into this category. Analysis established that those individuals have a younger median age of death (57 vs 64) and are more likely to have a treatable cause of death due to conditions such as pneumonia or seizures, while those with mild or moderate learning disability were more likely to have preventable causes of death, such as those related to heart disease or cancer.

The report includes an analysis of deaths among autistic adults without a learning disability. While it shows that mental health issues were a prominent concern for many autistic people, researchers stress the need for continued data collection to improve the understanding of mortality among autistic adults.

Dr Rory Sheehan, Senior Clinical Lecturer and one of the report’s authors said, “Although the LeDeR annual report includes a limited number of reviews of the deaths of autistic adults, the data underscore the need to ensure timely access to good quality mental health support adapted to the needs of this group.

"LeDeR data continues to be important in demonstrating the health inequities people with a learning disability and autistic people experience and pressing the need for change.”