Fall in avoidable deaths for people with learning disabilities but remains twice national average, report finds

A national report, commissioned by NHS England and produced by Kingston University, King’s College London and the University of Lancashire, has found the proportion of avoidable deaths among adults with learning disabilities drop since 2021 but remains almost double the rate seen in the general population in the country.

The 2024 Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) national report found the proportion of avoidable deaths among adults with learning disabilities fell from 46.3 per cent in 2021 to 39 per cent in 2024. However, despite this improvement, avoidable deaths remain nearly double the rate seen in the general population at 21.1 per cent.

The report, led by researchers from the Institute of Psychiatry, Psychology and Neuroscience (IoPPN) at King’s College London, also found the median age at death for adults with a learning disability was 62.8 years, compared with 81.8 years in the general population – a difference of 19 years. More than half (56.6 per cent) died before the age of 65, while the equivalent figure in the general population was 14.8 per cent.

Co-produced with Kingston University and the University of Lancashire, the report found respiratory infections and epilepsy continue to account for a significant proportion of avoidable deaths and have been identified as priority areas for improvement. 

Pneumonia, ischaemic heart disease and epilepsy together accounted for nearly a third (32.8 per cent) of all avoidable deaths in 2024. Treatable deaths, deaths that could potentially be avoided through timely and effective healthcare, including early diagnosis, appropriate treatment, and prompt management of deterioration, were the main driver of the gap between adults with a learning disability and the general population.

The 2024 report includes a dedicated chapter on adults with Down syndrome for the first time. Their median age at death was 59.8 years, 22 years younger than the general population, with nearly four in ten (39.8 per cent) having a recorded dementia diagnosis.

Professor of Intellectual Disability and Palliative Care at Kingston University Irene Tuffrey-Wijne, who also leads the Kingston University Intellectual Disability (KIND) Research Group, played a key role in the report which she said is essential for driving change and action.

“We really need to keep the focus on the scandal of so many people with a learning disability dying too young. LeDeR has provided us with important evidence about things going wrong and has helped to show where care and treatment is below standard. This was the last LeDeR report commissioned by NHS England and I am very concerned that, without these reports, there will be even less focus on the need for change and action. As my colleague Richard Keagan-Bull said: ‘Don’t put us back in the dark,’” Professor Tuffrey-Wijne said.

Co-investigator and Senior Clinical Lecturer at King’s IoPPN Dr Rory Sheehan, said the report indicates progress in reducing health inequalities in people with a learning disability continues to be a challenge.  “LeDeR is important because it provides the evidence of where care is falling short and where systems should focus their efforts on reducing health inequalities. Politicians, commissioners, health and social care providers, and leaders must now commit to using LeDeR findings to drive sustained improvements in care and ensure that people with a learning disability have the same opportunity to live long and healthy lives as everyone else.”

• Read The 2024 Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) national report.