New report from King's College London, University of Lancashire and Kingston University London, has found that the proportion of avoidable deaths among adults with a learning disability fell from 46.3% in 2021 to 39.0% in 2024.
The 2024 Learning from Lives and Deaths - people with a learning disability and autistic people (LeDeR) national report, commissioned by NHS England, and led by researchers from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London, and co-produced with the University of Lancashire and Kingston University London, has found that the proportion of avoidable deaths among adults with a learning disability fell from 46.3% in 2021 to 39.0% in 2024.
However, despite this improvement, avoidable deaths remain nearly double the rate seen in the general population (21.1%).
The report also found that 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%) died before the age of 65. In the general population the equivalent figure was 14.8%.
Respiratory infections and epilepsy continue to account for a significant proportion of avoidable deaths and are identified as priority areas for improvement in this year's report. Pneumonia, ischaemic heart disease and epilepsy together accounted for nearly a third (32.8%) 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.
Professor André Strydom, Chief Investigator and Professor in Intellectual Disabilities at King's IoPPN, said:
"Although the proportion of avoidable deaths for people with a learning disability has been steadily decreasing since 2021, it remains approximately twice as high as in the general population, and while care quality indicators are improving, important causes of avoidable deaths remain much more common than in the general population. These include deaths due to respiratory infections, which can be treated or prevented, and deaths due to epilepsy. These issues must be tackled with better and more targeted care, including improved coverage of vaccinations for infections such as pneumonia and flu."
"This year, we included additional analyses of the deaths of people with Down syndrome. We showed that treatable causes of death were a particular concern in this group, and in addition, many individuals had dementia due to Alzheimer's disease. We hope that the forthcoming government guidance to implement the Down syndrome Act will help ensure care of people with Down syndrome is improved, and that it will include a focus on better care of those with dementia."
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%) having a recorded dementia diagnosis.
Dr Rory Sheehan, Co-investigator and Senior Clinical Lecturer at King's IoPPN, said:
"The LeDeR 2024 report indicates that 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."
Dr Michael Kwan Leung Yu, First-author of LeDeR 2024 report and Post-Doctoral Research Associate at King's IoPPN , said:
''From an epidemiological point of view, LeDeR offers a unique national perspective. Its large sample size supports more robust and reliable conclusions than can be drawn at the regional level and of individual NHS trusts, identifying important priorities for national healthcare policy for people with a learning disability and autistic people. This year, we also included additional statistical analysis to examine important trends. For example, we tested whether the percentage of avoidable deaths has changed over time. This gives the public a clearer picture of the overall trend.''
The LeDeR report is produced by King's College London in partnership with the University of Lancashire and Kingston University London. It is an independent report produced on behalf of NHS England.
