The latest LeDeR reveals that more than 50% of adults with a learning disability die before they reach the age of 65.
The annual Learning from Lives and Deaths – people with a learning disability and autistic people report (LeDeR) was published in July 2026 and reviewed deaths recorded between 2021 and 2024.
It found that, in 2024, adults with a learning disability died, on average, 19 years younger than those in the general population. The median age at death for adults with a learning disability was 62.8 years, compared to 81.8 years for the general adult population.
Almost 57% of adults with a learning disability had died before the age of 65, compared to just under 15% for the general population.
The importance of LeDeR 2024
The annual mortality review is funded by NHS England and NHS Improvement and was first established in 2017 to help improve healthcare for people with a learning disability and autistic people in England. It aims to reduce health inequalities and prevent early deaths.
The reports are compiled by researchers at King’s College Lonon University, working in partnership with the University of Lancashire and Kingston University London.
They also receive support from the Staying Alive and Well Group. These are people with lived experience of a learning disability who help to make accessible versions of the report. They have worked on LeDeR for almost five years now and said they are “still shocked that we haven’t moved on that much.”
In their foreword to this year’s report, the Staying Alive and Well Group explains:
“Every year, working on the report is difficult. It makes us think about our own lives and about our friends. It’s scary to think what might happen to us. We explained our feelings in last year’s foreword and the year before. Our feelings haven’t changed.
“LeDeR is important because it finds out exactly how much earlier people with a learning disability and autistic people died. It finds out what was the most common thing people died of, and if it could have been avoided. LeDeR is important because if we have those numbers, we may be able to learn from it and do something. LeDeR is important because it shows us that we have to change the way people with a learning disability are treated.”
They added that far too many people with a learning disability are still dying too young, often avoidably, and that this fact should be headline news.
‘Significant action’ underway to improve learning disability care
In a written ministerial statement, the government agreed that the numbers highlighted by LeDeR were “stark.”
Responding to LeDeR 2024, a spokesperson for the Department of Health and Social Care (DHSC) said:
“Our thoughts to go out to all those who have lost loved ones and recognise that care for people with learning disability and autistic people needs to improve.
“Significant action is already underway to improve care. Over five million people have completed mandatory training, and along with new digital tools, improved data sharing and health check-ups, we will do all we can for people with a learning disability and autistic people.”
Key findings from LeDeR 2024
Other key findings of the report included:
- The proportion of avoidable deaths for adults with a learning disability who had a LeDeR review has significantly declined, dropping from 46.3% in 2021 to 39% in 2024, but it remains almost double that of the general adult population (21.1%).
- The leading causes of avoidable death for adults with a learning disability and autistic adults were treatable conditions like pneumonia, ischaemic heart disease and epilepsy. Together, they accounted for nearly a third (32.8%) of all avoidable deaths
- Treatable causes accounted for a larger proportion of avoidable deaths than preventable causes in 2024 (25% compared to 14%). These were the main driver of differences between adults with a learning disability and the general adult population, as preventable causes accounted for a similar proportion across populations (14% and 13.5%, respectively).
When the death of a person with a learning disability is registered for a LeDeR, the individual’s life, healthcare and support and cause of death are all examined, along with considering whether anything could have been done differently.
King’s College London works with its partners to analyse the reviews and compile the subsequent report.
Government ‘committed to improving outcomes’
This latest report will be the final LeDeR published in the current format, with the government confirming that future data will be recorded alongside other health outcomes for people with autism and ADHD in England.
Health Minister Preet Kaur Gill said the statistics highlighted by LeDeR 2024 were “unacceptable,” and expressed that the government “want to reassure you that we take them seriously.”
She added that they were “committed to improving outcomes” for people with a learning disability and autistic people through early intervention and support and a focus on training to help improve the identification of people with a learning disability on GP registers, to ensure they attend vital health checks.
NHS England is planning to roll out a “reasonable adjustment digital flag” for all people with disabilities to ensure that any adjustments required are saved in their record.
LeDeR 2024 findings ‘a matter of life and death’
Meanwhile, the Royal College of Nurses (RCN) is concerned about a drop in the number of specialist health staff for patients with learning disabilities or autism. They published a report earlier this summer which revealed that the number of specialist practicing nurses had fallen by almost half (44%) in just over a decade – taking the workforce from 7,000 to 4,500, with only 500 new recruits taken on to learn the specialism this year.
The Chief Executive of learning disability charity Mencap, Jon Sparkes OBE, expressed concerns that ending the LeDeR report in its current format could lead to the vital issue becoming “deprioritized.”
He said:
“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.”
Practical recommendations for clinicians and services
As part of its quest to improve health outcomes and life expectancy for adults with learning disabilities and autistic people, the LeDeR report does not just highlight the statistics but also sets out practical actions that clinicians and services can take to improve care and reduce avoidable deaths.
The recommendations centre around the causes of avoidable deaths and how to reduce these through improvements to condition-related care, including:
Respiratory infections:
- Clinicians should provide caregivers with guidance on recognising signs of respiratory infection and deterioration in high-risk individuals, define accessible pathways for escalation from general practice to secondary care and set out clear routes to specialist advice, rapid investigation, diagnosis and treatment. Annual health checks should also be used to review and improve uptake of vaccination for respiratory infections.
- NHS England and the DHSC should consider developing a national training programme to help care staff better support individuals at high risk of respiratory infections, while JCVI should review vaccination guidelines.
Epilepsy care:
- Ensure care staff and family caregivers understand what they need to monitor for and when they should seek additional support from health services. Clinicians should identify high-risk groups and use a multi-disciplinary approach to ensure regular reviews and medication optimisation. Reviews should be supported through evidence-based tools such as the SUDEP and Seizure Safety Checklist and the NHS Right Care toolkit to improve epilepsy related safety issues.
- Care staff should receive a national training programme to enable them to recognise changes in presentation, management of seizures and managing epilepsy-related risk.
Long-term conditions:
- Annual health checks should be carried out by primary care professionals to help identify risk factors for long-term conditions, with accessible Health Action Plans produced to promote preventable actions and healthy behaviours. Clinicians should provide reasonable adjustments to care and support from learning disability teams to ensure equitable access to chronic disease pathways.
- Local authorities and social care providers should incorporate support for healthy lifestyles into care packages and evaluate this as part of care reviews.
Dementia and Alzheimer’s Disease in adults with Down Syndrome:
- Services should offer adults with Down syndrome baseline cognitive assessment, regular screening and dementia diagnostic pathways, with input from multi-disciplinary specialist services.
- Advice to ensure the commissioning of appropriate services, support and care settings for people with Down syndrome at risk of dementia should be included in forthcoming government guidance for the Down Syndrome Act 2022
Suicide and accidental death:
- Frontline health and care professionals need to be aware of the differences in presentations of distress among adults with learning disabilities and autistic people. Mental health support pathways should be made accessible and responsive, with interventions being neurodiversity-informed and personalised crisis and safety plans produced for high risk individuals.
- There should be a targeted national action plan to prevent deaths by suicide among autistic people. This plan should address support gaps, such as the provision of reasonable adjustments to care, coordination and communication between services. Measures should be implemented to improve recording, reporting and analysis of deaths of autistic people without a learning disability.
Vital training to improve care, treatment and support
First Response Training (FRT) is a leading, national training provider.
They deliver over 7,000 courses each year in the fields of health and safety, first aid, fire safety, food safety, mental health, health and social care and other special focus topics.
Their diverse portfolio includes training awards designed for care workers, such as Oliver McGowan Mandatory Training, Positive Behaviour Support, Safeguarding Adults, Equality, Diversity and Inclusion, Person Centred Care and Support and many others.
Their course portfolio spans Care Certificate standards, mandatory training awards, clinical skills, special focus courses and training for supervisors and managers.
A Trainer at FRT, says:
“It’s vitally important that lessons are learned from the avoidable, unnecessary deaths of people with learning disabilities and autistic people, to ensure that mistakes are not repeated and more people do not experience the same failures in care.
“The latest LeDeR report shows high quality training is very much needed to help drive forward change and improve care.”
Oliver McGowan Mandatory Training
FRT was one of the first training providers in the country to be approved to offer essential training in line with the Oliver McGowan Mandatory Training on Learning Disability and Autism.
They are quality assured to deliver Oliver’s Training through the Quality Assured Care Learning Service (QACLS) from the Department of Health and Social Care and Skills for Care.
The national training provider aims to empower and educate staff to transform their practice by embracing the lived experiences of autistic individuals and those with learning disabilities. Through the collaborative strength of their trios—facilitating trainers and experts with lived experience — FRT aims to inspire lasting change in how individuals are understood, supported, and valued.
FRT are hosting a series of open, public Tier 2 courses in London, Manchester and Birmingham in the coming months. You can book a space on any of these courses online now.
FRT have also developed a free-to-download quick guide to the new Oliver McGowan draft code of practice.
This guide explains what the new code of practice means for health and social care providers, how to stay current, and how to meet new legal duties.
You can also download FRT’s free Oliver McGowan Mandatory Training brochure.
Providing an alternative training solution
To offer health and care providers flexibility and choice, FRT have also developed their own Tier 2 Mandatory Autism and Learning Disabilities Training package.
Fully mapped to the core capabilities framework, Oliver McGowan Mandatory Training Code of Practice and externally accredited, this package offers providers an efficient, affordable alternative solution.
The training is designed to meet statutory standards and equip health and social care staff to deliver more empathetic, person-centred support.
A trainer at FRT explains:
“This isn’t just about compliance. It’s a chance to improve outcomes, reduce bias, and truly understand the lived realities of autistic individuals and people with learning disabilities, helping to improve care and support and prevent avoidable deaths.”
You can learn more about how FRT developed this training package here.
For further information on other types of neurodiversity training, visit their webpage or download the brochure.
You can contact FRT via freephone 0800 310 2300, send an e-mail to info@firstresponsetraining.com or submit an online enquiry.