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.
We are delighted to be leading this important programme of research to help inform the NHS’s drive to improve the quality of care of people with learning disabilities and autistic people. We will build on previous work to help ensure that the issues underlying premature mortality is addressed– Professor Andre Strydom, Project Lead and Professor in Intellectual Disabilities at King's
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 LeDeR programme is vital in improving the health and reducing premature deaths of people with learning disability. We are very pleased to be leading the academic collaboration and ensuring that information captured in LeDeR reviews is used to maximum benefit– Dr Rory Sheehan, Clinical Senior Lecturer at King’s
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).
It is important for people with learning disabilities to be involved in the LeDeR programme. They are at the heart of all this. They need to be listened to, not just to be a number but to be involved and taken seriously. We will be able to help everyone understand how things can be improved– Richard Keagan-Bull, Research Assistant & co-lead on Kingston and St George’s Co-Production Partnership
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.
We are delighted to have been chosen as one of three universities to develop further this internationally renowned programme. We have a strong track record of working collaboratively with health and social care partners across the North West and we will continue to do so as we bring our expertise in quality improvement and addressing health inequality to this programme– Professor Umesh Chauhan, University of Central Lancashire
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.
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