Introduction
Established in England in 2017,1 Learning from Lives and Deaths — People with a Learning Disability and Autistic People (LeDeR) is a mortality programme designed to improve health care and reduce health inequalities by providing insights into factors that have contributed to premature and often avoidable deaths among people with a learning disability and autistic people. The latest LeDeR national report, published in July 2026,2 has important implications for GPs treating people with learning disabilities and autistic people.
How does LeDeR work?
Each integrated care board (ICB) has a responsibility to have a process in place to ensure local sharing of relevant information to inform service improvements. LeDeR notifications of deaths of adults with a learning disability and autistic adults are completed via an online form.3 This takes about 10–15 minutes to complete. Although anyone can notify, few (0.6%) forms are completed by friends, family members, or carers; most are submitted by professionals who were involved in the person’s care.4 Each GP practice should have a process in place to notify the deaths of adults with a learning disability and autistic adults to LeDeR and to implement actions identified through LeDeR reviews.
An initial LeDeR review is conducted for most people. This includes looking at GP records (or speaking to the GP) and contacting family members and other health and care agencies that were involved in the person’s care. It collates demographic data, details the cause of death and any relevant long-term conditions the patient had, and records whether a Do Not Attempt Resuscitation (DNAR) was in place. A ‘pen portrait’ about the person is completed, including the person’s character, how they communicated, social activities, and what their health and care needs were. It also details when the patient last had a GP learning disability annual health check, what was discussed at it, and whether a health action plan was in place.
If the initial review raises concerns, or if the family requests it, the review is progressed to a focused review. A focused review is also conducted automatically if the person was autistic without a learning disability, was from an ethnic minority group, or had been subject to Ministry of Justice or Mental Health Act restrictions in the past 5 years. Focused reviews look in more detail at each health condition the person had, their medication, and what social care and support they received. They review the person’s care and experience over their past 6 months and, if relevant, earlier.
How is LeDeR reported?
ICBs publish their own annual LeDeR reports, with local flexibility to determine which data are collated and in what format the reports are produced. Some ICBs focus on clinical priorities (for example, pneumonia) based on areas requiring quality improvement locally. National annual reports (of which there have been nine so far) report on findings from notifications and completed reviews across England, including common causes of avoidable death.
What does the latest national report show?
In 2024, of the 3395 LeDeR notified deaths about people with a learning disability, 2713 LeDeR reviews were completed. Of these, it was found that for people with a learning disability, the median age at death was 19 years younger than the general population, and 39% had died from an avoidable cause of death (nearly double the rate of the general population). Many others experienced delays in care or treatment (40%), issues with organisational systems (41%), or gaps in their care provision (20%). For 26% of patients, diagnosis and treatment guidelines were not met. Although only 6% were from ethnic minority groups, adults from all ethnic minority groups had a younger median age at death compared to White adults (for example, the median age at death for Asian and Asian British adults was 42 years compared to 64 years for White adults). Between 2021 and 2024, adults with a profound learning disability died on average 20 years earlier than those with a mild learning disability.2
For autistic people without a learning disability, between 2021 and 2024, 54% of people with autism but without a learning disability who had a LeDeR review had a diagnosis of depression and 50% a diagnosis of anxiety. When services and care were not tailored to meet the needs of autistic adults, many disengaged from services, affecting the continuity of treatment and health and social care.2
What have LeDeR deep dives shown?
LeDeR deep dives analyse themes across LeDeR data, rather than individual deaths. People with a learning disability in England have higher rates of new onset of type 2 diabetes and develop it on average 10–15 years earlier than the general population; they are also less likely to have eye and foot checks.5 Approximately 15% of people with a learning disability who died from bowel cancer were <50 years of age.6 Better clinical practice was reported in those who had a learning disability liaison nurse.7 People with a learning disability are more likely to have been prescribed constipating medications and laxatives and, although constipation did not appear on any of the death certificates, some people died from potentially related causes, for example, bowel perforation.8 Compared with those dying of other causes, impaired airway clearance, postural problems, and swallowing difficulties were more common in people with a learning disability who died from a lower respiratory tract infection (LRTI).9 The most common cardiovascular causes of death in adults with a learning disability were ischaemic heart disease, stroke, and heart failure.10
Key points
People with a learning disability continue to experience health inequalities and die prematurely and avoidably from causes considered preventable or treatable.11 Compared to the general population they develop type 2 diabetes earlier,5 are at higher risk of constipation, and at higher risk of dying from early onset colorectal cancer and swallowing-difficulty-related LRTI.
GPs should continue to optimise coding and the provision of thorough annual health checks, and offer annual flu vaccination to everyone with a learning disability. Each GP practice should have a process in place to notify the deaths of adults with a learning disability and autistic adults to LeDeR, and to implement actions identified through LeDeR reviews. GP practices should ensure that reasonable adjustments are discussed and supported for autistic people and patients with a learning disability, recorded, reviewed, and shared within the reasonable adjustment digital flag. Further resources are shown in Box 1.
Notes
Provenance
Commissioned; not externally peer reviewed
Competing interests
The authors have declared no competing interests.
- Received June 26, 2026.
- Revision received July 16, 2026.
- Accepted July 17, 2026.
- © British Journal of General Practice 2026
