The Learning Disabilities Mortality Review (LeDeR) programme was established to support local areas across England to review the deaths of people with a learning disability, to draw out learning from those deaths and to put that learning into practice. Local areas are expected to improve the quality of the health and social care services provided to people with a learning disability, and to address the persistent health inequalities they face. LeDeR is the first national programme in the world set up to systematically review the deaths of all people with a learning disability aged four years and above which are notified to it and to embed mortality review processes across the country. The evidence of sustained and profound health inequalities for people with a learning disability is compelling and cannot be ignored. The evidence show that too many people with a learning disability die prematurely. The deaths reviewed by the LeDeR show that compared with the general population, the median age of death is 23 years younger for men and 29 years younger for women and often for entirely avoidable reasons.
Deaths of children aged 4-17 (inclusive) will therefore be reviewed by the Child Death Overview Process (CDOP). It would not be necessary, nor appropriate, to review the case again but the local reviewer and/or Local Area Contact for the LeDeR programme will need to liaise with the Child Death Review Co-ordinator for their area to ensure the collection of core data for the LeDeR programme and to offer expertise about learning disabilities as appropriate.
The Local LeDeR Steering Group
The Designated Nurse for Safeguarding Adults for Croydon CCG is the Local Area Contact (LAC) and the Steering group is chaired by an independent lay member. Membership includes colleagues from across health and social care who represent various agencies such as Croydon Health Services, SLAM and the Local Authority.
The role of the LeDeR Steering Group is to:
- To work in partnership with the Regional Lead for the work
- To guide the implementation of the programme of local reviews of deaths of people with learning disabilities
- To help interpret and analyse the data submitted from local reviews, including areas of good practice in preventing premature mortality, and areas where improvements in practice could be made
- To monitor the action plans that are developed as a result of the reviews of deaths, and take or guide appropriate action as a result of such information
- To ensure agreed protocols are in place for information sharing, accessing case records and keeping content confidential and secure
- To share anonymised case reports pertaining to deaths or significant adverse events relating to people with learning disabilities for publication in the LeDeR Programme repository in order to contribute to collective understanding of learning points and recommendations across cases
Who to contact if you have any queries
Please contact Estelene Klaasen who is the Local Area Contact for Croydon CCG has oversight of the programme activities.
Useful resources including information about how to notify a death