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Handing on the baton of the Learning Disabilities Mortality Review (LeDeR) programme

14 May 2021

The University of Bristol established, and has since been supporting, the Learning Disabilities Mortality Review (LeDeR) programme since 2016. As planned, that support is coming to an end on 31st May 2021.

During the past five years, the programme has developed from a proposal on paper to a national service improvement initiative that is the first of its kind in the world. 

The University of Bristol is pleased to have been able to support the programme during this time and between 2015-2021, the University of Bristol involvement has 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. 

This support has enabled greater recognition about the circumstances leading to deaths of people with learning disabilities and the introduction of service improvement initiatives by policy makers and practitioners at local and national levels. 

Professor Pauline Heslop, Programme Lead:

Clearly, we haven’t done this alone and we would like to acknowledge and thank people with learning disabilities and their families, health and care professionals, practitioners and advocates who have all contributed in many and diverse ways to make the programme the success it has become. 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. 

We trust that the LeDeR programme will continue to move from strength to strength in the future. The end of the University of Bristol involvement does not mean the end of the programme: deaths of people with learning disabilities will continue to be reviewed, lessons learnt, and services improved. We still have a lot to do to reduce health inequalities for people with learning disabilities, as the global COVID-19 pandemic has highlighted once again. We will continue to follow the programme with interest and advocate as strongly as we can for the rights of people with learning disabilities to live long, happy and healthy lives. 

Further information

Update: June 2021

The contract with the University of Bristol to support LeDeR has come to an end. 

There is now a new LeDeR website where you can find out more about LeDeR or tell us about the death of a person with a learning disability. 

Read a summary of the aims and achievements of The Learning Disabilities Mortality Review (LeDeR) programme at the University of Bristol 2015-2021 and of the findings from LeDeR reviews 2015-2020.

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