The LeDeR programme

The national Learning Disabilities Mortality Review (LeDeR) programme, the first of its kind in the world, was established following evidence from the University of Bristol led Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD). The LeDeR programme was delivered by the University of Bristol, commissioned for five years (2015-2020) by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, and directly by NHS England from 2020-2021. In May 2021, the University of Bristol involvement in the programme came to a planned end.

Aims and achievements during the contract

The LeDeR programme now supports local areas to review the deaths of people with learning disabilities, identify learning from those deaths, and take forward the learning into service improvement initiatives. Its overall aims are:

• To support improvements in the quality of health and social care service delivery for people with learning disabilities.
• To help reduce premature mortality and health inequalities for people with learning disabilities.

With the support of the University of Bristol between 2015-2021, the programme achieved:

• The establishment of a central point to which all deaths of people with learning disabilities are notified.
• The development and establishment of a methodology for reviews of deaths of people with learning disabilities.
• The development of a web-based portal for case reviews.
• The development a core dataset for local review teams reviewing the deaths of people with learning disabilities.
• The aggregation and analysis of the core data submitted from local reviews.
• The reporting of analysed data nationally through the publication of a national annual report.
• The delivery of a series of additional projects, briefing papers and publications related to better understanding the mortality of people with learning disabilities and indications for service improvement.

Since its inception there has been strong agreement and recognition of the importance of LeDeR and its aims, and a commitment to the continuation of the LeDeR programme was confirmed in the NHS Long Term Plan (2019). By the end of May 2021, the deaths of over 11,000 people with learning disabilities had been notified to the LeDeR programme.

Click here for the annual reports and easy-read versions of the annual reports and here for a summary of findings from LeDeR reviews 2015-20. 

The LeDeR programme from June 2021 onwards

The planned end of NHS England’s contract with the University of Bristol in May 2021 provided an opportunity for NHS England to reflect on what has gone well with LeDeR and to identify areas of the programme that need to improve. A newly revised LeDeR policy was published by NHS England in 2021, incorporating a refreshed review process that will also include reviews of the deaths of people with autism.

Information about the LeDeR programme from June 2021 onwards is available from: https://leder.nhs.uk

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For further information about the University of Bristol support for the LeDeR programme contact Pauline.Heslop@bristol.ac.uk

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