Written statement: Publication of ‘Learning from lives and deaths – People with a learning disability and autistic people’ (LeDeR) report - July 13

Minister for Health Innovation and Safety (Preet Kaur Gill): Today I acknowledge the publication of the ninth annual - Learning from Lives and Deaths of people with a learning disability and autistic people (LeDeR) report, which looks at deaths reviewed in 2024. A copy of the report has also been placed in the House Library. LeDeR is a service improvement tool for Integrated Care Boards (ICBs) to reduce health inequalities. This independent report, published by King's College London, highlights continued inequalities, including that adults with a learning disability die on average 19 years younger than the general population which remains unacceptable.

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.

I recognise that today's findings are stark and I want to reassure you that we take them seriously. This includes the finding that 78.8% of adults with Down syndrome died before the age of 65. Through the implementation of the Down Syndrome Act 2022, we are striving to improve life outcomes for people with Down syndrome, raise awareness and understanding of their needs, and break down barriers to opportunity that they, and other disabled people, face.

The most common category of cause of death for autistic adults without a learning disability remains suicide, misadventure or accidental death. We recognise that autistic people can face barriers to getting the right mental health support at the right time. We are committed to delivering the Suicide Prevention Strategy for England, which aims to reduce the number of lives lost to suicide and highlights the need to provide tailored, targeted support to priority groups including autistic people. The mental health needs of autistic people will also be reflected in the new Mental Health Strategy, including consideration of how services can provide more equitable access to support and make appropriate adjustments.

Over the past year, NHS England has worked with clinicians, people with lived experience, charities and ICBs to improve the LeDeR review process. The revised approach seeks to strengthens a focus on service improvement and better incorporates LeDeR into local processes. For example for each death notified to LeDeR, a revised review format will prompt reviewers to reflect on modifiable factors, including barriers to the person living a long and healthy life, and any safeguarding or quality concerns.

As part of this transition, this LeDeR report is the final national academic report.

LeDeR data will 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. Using the General Practice Extraction Service (GPES) it will aim to address limitations of current data sources and link with wider datasets such as hospital episodes and mental health activity. This marks a transformative opportunity to better understand disparities and inform targeted local and national solutions. I am committing to the publication of this dataset and will share further details in due course.

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.

We remain dedicated to tackling avoidable deaths and expect local areas to continue prioritising LeDeR as part of their actions to reduce health inequalities in their populations.