What is LeDeR?

The Learning Disabilities Mortality Review programme, also known as LeDeR, is the first national programme of its kind aimed at making improvements to the lives of people with learning disabilities. It was set up to drive improvement in the quality of health and social care service delivery for people with learning disabilities. It does this by looking at why people with learning disabilities typically die much earlier than average.

The Purple All-Stars have put together an informative video all about LeDer and equality for those with learning disabilities.

What is a LeDer review?

In a LeDeR review someone who is trained to carry out reviews (usually someone who is clinical or has a social work background), looks at the person’s life and circumstances that led up to their death and from the information makes recommendations to the local commissioning system about changes that could be made locally to help improve services for similar people. They also look at GP, social care and hospital records (if relevant) and speak to family members about the person that has died to find out more about them and their life experiences.

Health Education England  – film about Cayden

Health Education England have shared a video about a man called Cayden who became unwell. The film highlights barriers people with a learning disability face to accessing health services and how the assumptions and attitudes of professionals can seriously impact on care care and treatment outcomes.

This video particularly focuses on the role of the person supporting someone with a learning disability in a healthcare setting, and how important it is for health professionals to listen to those who know the person well.

» Click here to watch the video

New National LeDeR Policy

The new LeDeR policy aims to set out for the first time for the NHS the core aims and values of the LeDeR programme and the expectations placed on different parts of the health and social care system in delivering the programme from June 2021. It will serve as a guide to professionals working in all parts of health and social care system on their roles in delivering LeDeR. In the past, the University of Bristol were involved in running LeDeR but now that contract has ended the NHS have taken over responsibility and have created a new policy to ensure LeDeR makes a difference in the future.

The new policy will help anybody in health or social care who has anything to do with LeDeR this includes:

  • NHS staff
  • Social care staff
  • Council staff
  • Voluntary organisations

» Click here to view the policy
» Click here for an easy read of the policy 

The NHS have put together some LeDeR Action plans based on the recent reports:

LeDeR Action from learning report 2020/21 Click here
LeDeR Action from learning report Easy Read 2020/21 Click here
LeDeR Action from learning case studies Click here
LeDeR Action from learning helpful resources Click here
HCPA LeDer webinar recording 12th October 2021 Click here
HCPA LeDer webinar Powerpoint slides Click here
HCC LD My Health resources Click here
Skills for Health Core Capability Framework Click here


Publication of LeDeR report and Action from Learning Report

Bristol University

The University of Bristol’s fifth annual LeDeR report was published 10 June 2021. From this they identified 10 areas of improvement:

1) Leader Reviews to be taken under through the lens of greater racial awareness.
2) The new Integrated Care Systems must pay attention to the needs of children and adults from minority ethnic groups living in their local area.
3) A nationally endorsed standard resource is required, with local flexibility, that provides information for people with learning disabilities and their families about their legal rights and entitlements, national services available and how to access them, and local sources of support.
4) There needs to be better partnership-working with local communities, particularly ethnic communities.
5) Local areas must develop long terms plans that show how they will meet the needs of people with learning disabilities that the COVID-19 pandemic has shown are a problem.
6) From the start of any future public health emergency, such as COVID-19, the needs of people with learning disabilities must be considered.
7) NHS11 services must provide training to NHS11 staff about how to respond appropriately to calls about people with learning disabilities or from people with learning disabilities in their families.
8) A LeDeR representative should always be involved with the child death review meeting/process for children with learning disabilities.
9) NHS England to collect and collate more information about the needs and circumstances of people who have been subject to mental health or criminal justice restrictions and use this to inform appropriate, personalised service provision for this group of people.
10) Progress on actions in response to previous recommendations about minimising the risk of aspiration pneumonia in people with learning disabilities needs to be published.

» Read the annual report here
» Read the easy read annual report here

Hertfordshire Annual LeDeR report

This report presents information about the deaths of people with a learning disability living in Hertfordshire aged 4 years and over notified to the LeDeR programme from 1st April 2017 – 31st March 2021. The report begins by setting out the local and national context of the LeDeR programme and describes key aspects of the local delivery. Demographic and quality of care data is presented, followed by a description of how Hertfordshire is implementing actions from learning.

» Read the full report here