LeDeR programme publishes its last report and shows small drop in avoidable deaths

Avoidable deaths among adults with learning disabilities have fallen from 46.3% in 2021 to 39.0% in 2024, according to the latest and last LeDeR report, but they remain twice as high as in the general population.

The 2024 Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) national report will be the last academic report of this kind, as the Government announced it will now be incorporated within a new patient-level dataset which will bring together data on health outcomes for autism, ADHD, and people with a learning disability, including Down syndrome, in England.

This will use the General Practice Extraction Service (GPES) and aims to address the limitations of current data sources and to link with wider datasets, such as hospital episodes and mental health activity.

Findings from the 2024 LeDeR report

The 2024 report found that 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, whereas in the general population the equivalent figure was 14.8%.

It also found that pneumonia, ischaemic heart disease and epilepsy together accounted for nearly a third (32.8%) of all avoidable deaths in 2024.

More than half (56.6%) died before the age of 65, whereas in the general population the equivalent figure was 14.8%.

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.

LeDeR and health inequalities

The report, commissioned by NHS England, is led by researchers from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London and is co-produced with the University of Lancashire and Kingston University London.

• Easy read version of 2024 LeDeR report

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.”

Important priorities for national healthcare policy

LeDeR received criticism last year after the 2023 report had to be republished because of technical issues with the supplied data. Charities and campaigners reacted angrily to the updated report, saying the retraction has been deeply upsetting for affected families and must not happen again.

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.

Dr Michael Kwan Leung Yu, first author of the LeDeR 2024 report and a Post-Doctoral Research Associate at King’s IoPPN, said that this year the team also conducted additional statistical analyses to examine key trends. For example, it tested whether the percentage of avoidable deaths has changed over time, providing the public with a clearer picture of the overall trend.

He added: “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 avoidable deaths for people with a learning disability and autistic people.”

The report was accompanied by a Ministerial Statement given by Preet Kaur Gill, Parliamentary Under-Secretary (Department of Health and Social Care), who confirmed that the 2024 report is the final national academic report.

She said: This government is committed to learning from good and poor practice and driving improvements at all levels to secure better outcomes for people with a learning disability and autistic people. The action we are taking will build a more complete picture of people’s lives and deaths, informed by what we have heard from people, families and carers.

“The government is committed to improving outcomes for people with a learning disability and autistic people. Early intervention and ensuring people receive the right care at the right time are central to lasting change. We are taking significant action through continued roll out of the Oliver McGowan Mandatory Training on learning disability and autism across health and adult social care staff; improving identification of people with a learning disability on GP registers and increasing uptake of annual health checks and health action plans; and continued piloting of annual health checks for autistic people. NHS England is also rolling out a Reasonable Adjustment Digital Flag for all disabled people to ensure that adjustments are recorded and shared appropriately in care records.

Mencap concerned about future of LeDeR

Mencap said they had concerns about the LeDeR programme being deprioritised amid mergers and reorganisations, drastic cuts to budgets and staffing, and the loss of specialist learning disability roles.

Jon Sparkes OBE, chief executive, said: “The LeDeR programme was developed for a reason. People with a learning disability die on average nearly two decades earlier than the general population, and too many deaths are avoidable and caused by indifference. The programme has helped drive improvements, but there is a long way to go – people are still dying 19 years too young. This is literally a matter of life and death, and risks undoing years of hard-won progress.

“We urgently need to know how the Government will maintain independent scrutiny and, importantly, understand and tackle the causes of avoidable deaths. People with a learning disability need to know their lives are valued. Bereaved families need confidence lessons will be learned from their loved one’s death, and that other families will not have to face the same loss in future. National and local action must not be weakened at a time when people with a learning disability continue to die far too young.”

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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