LeDeR was established to support local areas in reviewing the deaths of people with learning disabilities, identify learning from those deaths, and take forward the learning into service improvement. It was implemented at the time of considerable spotlight on the deaths of patients in the NHS, and the introduction of the national Learning from Deaths framework in England in 2017.
The LeDeR programme aims to positively influence practice and policy by:
- Identifying potentially avoidable contributory factors related to deaths of people with learning disabilities
- Identifying variation and best practice in preventing premature mortality of people with learning disabilities
- Developing action plans to make any necessary changes to health and social care service delivery for people with learning disabilities
On the 1 June 2021 a new LeDeR policy was launched. LeDeR will be the responsibility of Integrated Care Systems (ICSs).
- Integrated Care Systems (ICSs) will need to make sure that:
- LeDeR reviews are completed for their local area
- there are fewer preventable deaths because people are getting the right care
- all the organisations in the ICS learn from LeDeR to make services prevent people dying too soon.
- there is a stronger emphasis on the delivery of the actions coming out of the reviews and holding local systems to account for delivery, to ensure that there is evidence of service improvement locally.
- The new process will involve an initial review and then a decision will be taken whether to complete a focused review.
- The process should look at the circumstance of a death but also someone’s life before death.
- For the first time deaths of adults who have a diagnosis of autism, but no learning disability will be included in the process. LeDeR reviews will be done for all autistic people over the age of 18 who have been told by a doctor that they are autistic and had this written in their medical record. This change will take place later in 2021.
- All those from Black, Asian and minority ethnic backgrounds will also get a focused review
Further information is available at leder.nhs.uk including how to notify a death
Reports
- LeDeR annual report 2022/2023
- LeDeR annual report 2022/2023 (easy read)
- LeDeR annual report 2021/2022
- LeDer annual report 2021/2022 (easy read)
- NCL CCG annual report 2020/2021
- NCL CCG annual report 2020/2021 Executive Summary
- NCL CCG annual report 2020/2021 (easy read)
- June 2021 – Action from learning case studies
- June 2021 – Action from learning report and helpful resources
- July 2020 – Action from learning report
- LeDeR Annual Report 2020
- NCL CCG LeDeR annual report 2019/2020
- NCL CCG LeDeR annual report 2019/2020 (easy read)
- Summary of findings 50 LeDeR reviews of deaths related to COVID 19
- Deaths of people with learning disabilities from COVID19 (easy read)
Case study example of good work on Acute Discharge
An example of service improvement developed due to learning from LeDeR reviews in Enfield and Barnet is the new easy discharge summary pack from the Royal Free London Foundation Trust:
‘A quality improvement project at the Royal Free London Foundation Trust has launched a new easy read discharge summary: To Take Home Information. The standard hospital discharge summary contains medical terminology that can be difficult for patients with learning disabilities/carers to understand. The aim of this accessible discharge summary is to empower patients and/or their carers to have a good understanding of their health needs. The QI project is looking to embed this document into the discharge process, patients/carers can also bring a copy of this document with them to an appointment or ask for one to be completed on discharge. The document can be downloaded directly from the Royal Free Trust internet page.
This document was created in collaboration with the A2A London network (Access to Acute, network of acute liaison nurses across London and beyond).’
Who to contact
Please contact nclicb.lederadmin@nhs.net for any information about LeDeR