NHS England have announced that King’s College London will lead a new £1.75m multi-partner collaboration to support the National Learning Disability and Autism Programme to reduce health inequalities and premature mortality amongst people with a learning disability and autistic people.

On average, people with a learning disability die earlier than the general public, and do not receive the same quality of care as people without a learning disability. Over a period of five years, this collaboration will see the project team co-ordinate data analysis and deep dives of NHS England’s Learning Disability Mortality Review programme (LeDeR) to produce a yearly report, and to make service recommendations to the NHS to affect change, address health inequalities, and improve care and health outcomes.

Academic partners working with King’s include the University of Central Lancashire, Kingston and St George’s University, and London South Bank University. Contributing to the project will be a broad network of experts and stakeholders, including professional organisations, applied research and implementation centres (including King’s Health Partners and NIHR Maudsley Biomedical Research Centre) and input from advocacy and family organisations.

The collaboration is part of a new NHS England and NHS Improvement approach to insight and intelligence to support the whole Learning Disability and Autism Programme (including LeDeR).

LeDeR is a service improvement programme which has been operating nationally across England since 2017. LeDeR contributes to improvements in the quality of health and social care for people with a learning disability in England by supporting local areas to carry out reviews of the care provided to a person with a learning disability (aged 4 and over) prior to their death using a standardised review process. This enables the identification of good practice and what has worked well, as well as areas where improvements to the provision of care could be made.

LeDeR contains the largest body of evidence anywhere in the world about premature mortality of people with a learning disability at an individual level and, as of May 2021, is expected to include the data of more than 8500 completed reviews. From late 2021, LeDeR will also include similar data on autistic people.

This collaboration is led by the Institute of Psychiatry, Psychology & Neuroscience at King’s who will co-ordinate LeDeR data analysis and deep dives. University of Central Lancashire will lead on producing research digests and participate in deep dives. Kingston University & St George’s University (KU-SGUL), operating through Kingston University Enterprises Ltd, will lead a co-production partnership with the Foundation for People with Learning Disabilities, the Estia Centre, and Pathways Associates.

The partnership includes: London Southbank University, King’s Health Partners, South London and Maudsley NHS Foundation Trust, Voluntary Organisations Disability Group, Royal College of General Practitioners, Association for Real Change, Down Syndrome Association, Unique, People First, Lancashire and South Cumbria NHS Foundation Trust, NIHR Applied Research Collaboration North West Coast, The Innovation Agency, South London Health Innovation Network, other topic experts and an independent advisory group with family carer representatives and self-advocates.

For more information, please email Patrick O’Brien, Senior Media Officer