LeDeR programme

6 September 2024: Please note, we are in the process of updating documents and content on this page.

The LeDeR programme supports local areas to review the deaths of people with learning disabilities.

What is the LeDeR programme?

The Learning Disability Mortality Review (LeDeR) Programme is delivered by the University of Bristol. It is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England. Work on the LeDeR programme commenced in June 2015 and will continue to be run by the University of Bristol until May 2021.

A key part of the LeDeR programme is to support local areas to review the deaths of people with Learning Disabilities (deaths include from age 4 and above), helping to promote and implement the new review process, and providing support to local areas to take forward the lessons learned in the reviews in order to make improvements to service provision.

The LeDeR programme also collate and share anonymised information about the deaths of people with learning disabilities so that common themes, learning points and recommendations can be identified and taken forward into policy and practice improvements.

Core principles and values of the LeDeR programme

• LeDeR values the on-going contribution of people with learning disabilities and their families to all aspects of its work.
• LeDeR takes a holistic perspective looking at the circumstances leading to deaths of people with learning disabilities and does not prioritise any one source of information over any other.
• LeDeR aims to ensure that reviews of deaths lead to reflective learning which will result in improved health and social care service delivery.
• LeDeR’s aim is to embed learning from the reviews of deaths of people with learning disabilities into local structures to ensure their continuation.

The local LeDeR Steering Group

We have a Steering Group chaired by the Independent Registered Nurse, who is also a member of our Governing Body. The Steering Group aims to take a strategic level oversight of the reviews of deaths of people with learning disabilities, driving transformation to improve care. Meetings are held monthly.

The role of the LeDeR Steering Group is to:

• view reports of completed reviews presented by the reviewers or Local Area Contact (anonymised)
• support the identification and sharing of best practice in the review process
• monitor actions and outcomes
• respond to recommendations to improve service provision and reduce likelihood of premature deaths
• recognise and share best practice and innovation
• demonstrate the impact of changes.

The Steering Group is attended by representatives from all BNSSG health providers plus representation from the three BNSSG adult social care providers, the CQC representatives, GPs and NHSE regional LeDeR leads.

Further details on our LeDeR arrangements can be found in our LeDeR Policy Framework.

The Learning Disabilities Mortality Review (LeDeR) is a review process for the deaths of people with learning disabilities. The purpose of this policy framework is to detail how the LeDeR programme is managed locally.

Service user involvement in LeDeR reviews

We want people with learning disabilities to have the opportunity to contribute in the LeDeR review process and to be fully supported to participate equally, feeding their comments and ideas on the findings of the reviews to the LeDeR Steering Group.

We have established a LeDeR Servicer User Forum comprising of up to 16 members with learning disabilities from across Bristol, North Somerset and South Gloucestershire, which will meet quarterly. LeDeR Service User voices began contributing to the Steering Group in February 2020.

We aim to progress this in the following way:

• we will start by introducing the LeDeR process to Forum members using Easy Read materials.
• we will develop LeDeR stories of the care people experienced from reviews, to share and discuss at the LeDeR Service User Forum.
• we will present themes arising from completed reviews in an Easy Read format for discussion with Forum members.
• we will listen to Forum members’ ideas about how we can make care better and present this information to the LeDeR Steering Group.
• LeDeR Service User Forum will have a joint/shared meeting with the LeDeR Steering Group annually.
• when Forum Members decide they have confidence in knowing the LeDeR process and the issues they want to raise, the Forum will nominate two members to become representatives on the LeDeR Steering Group.
• the Forum Representatives will have a supporter in the meeting and time on the Steering Group agenda to present the views and feedback from the LeDeR Service User Forum.

If you support people with a learning disability or know someone who would like to get involved in the Service User Forum, please contact us.

Easy read information on the LeDeR Service User Forum and details of how to join.

Who to contact

For information about LeDeR, becoming a reviewer or attending the Steering Group, contact Lesley Le-Pine, Quality Lead and LeDeR Programme Manager:

Email: bnssg.leder@nhs.net
Phone: 0117 900 2577
Address: NHS Bristol, North Somerset and South Gloucestershire ICB
Floor 2, North Wing, 100 Temple Street, Bristol, BS1 6AG

Notify a death

Who can notify the LeDeR Programme of a death?

Anyone can notify the LeDeR Programme of a death, including people with learning disabilities themselves, family members, friends and paid staff.

How can you notify the LeDeR programme of a death?

You can report a death online or call 0300 777 4774.

Annual health checks for people with learning disabilities

Resources are available to support health professionals with annual health checks for people with learning disabilities. These resources are most relevant to GPs, practice nurses and primary care administrators.

The Oliver McGowan Mandatory Training on Learning Disability and Autism

We have widely circulated information about the launch of the Oliver McGowan Training which is now available. We are promoting this with all our providers and require them to make arrangements for staff to attend.

Information about the training can be found on the Health Education England website.

Reports and useful information