LeDeR withdraws its 2023 report due to newly discovered data issues

The Learning from Lives and Deaths – People with a learning disability and autistic people (LeDeR) 2023 report has been withdrawn due to technical issues with the supplied data.

The report published in September had already been heavily criticised for being nearly a year late, and an updated version is now expected in January 2026.

Due to a technical issue within the data supplied by the South Central and West Commissioning Support Unit, elements of the published LeDeR 2023 annual report have been impacted. As a result, some data on the cause of deaths were missing.

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 programme organisers said that “to be as accurate and as complete as possible, we want to include this additional information. In light of this, we are withdrawing the LeDeR 2023 annual report and intend to re-publish an updated version in January 2026.”

LeDeR found a drop in avoidable deaths

The 2023 report found that there had been “gentle but continuous improvement” in the median age of death for people with a learning disability in 2022. In 2018, the median age of death for adults with a learning disability was 61.8 years, but it has since risen to 62.9 years in 2022. If children are included, the age at death increased from 60.1 years in 2018 to 62.7 years in 2022.

Researchers also found a drop in the number of avoidable deaths since 2021 – 42% of deaths were deemed “avoidable” for people with a learning disability in 2022 compared to 50% in 2021.

The report also highlighted a sharp drop in the number of deaths due to Covid-19, from 24% of all causes of death in 2020 to 19% in 2021 and 6% in 2022 for adults with a learning disability.

At the time of publication, Professor Andre Strydom, the report’s Chief Investigator and a Professor in Intellectual Disabilities at King’s IoPPN, said, “Our analysis into this year’s data suggests that progress has been made in improving the lives of people with a learning disability. It is reassuring to see age at death increasing, while avoidable deaths continue to decrease. More deaths were referred to a coroner, which may help to identify where care can be improved. We also found a clear association between access to appropriate care and reductions in premature death, suggesting that, when the right level of care is provided, the level of risk goes down.”

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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