LeDeR
Learning from lives and deaths – people with learning disabilities and autistic people (LeDeR)
LeDeR is a national service improvement programme looking at the lives and deaths of people with a learning disability and autistic people. In Coventry and Warwickshire, the programme brings together partners in health and social care, with the aims to improve access, experience and outcomes of care.
Established in 2017 and funded by NHS England LeDeR works to:
- improve care for people with a learning disability and autistic people.
- reduce health inequalities for people with a learning disability and autistic people.
- prevent people with a learning disability and autistic people from early deaths.
People with a learning disability and autistic people often have poorer physical and mental health than other people and may face barriers to accessing health and care to keep them healthy. People with a learning disability and autistic people die on average significantly earlier than the wider population. For more information, please visit the NHS England LeDeR website.
To understand why this is happening, we undertake a formal review every time we are notified that a person with a learning disability or autism has died in Coventry and Warwickshire. As part of the review, we look at the health and social care services the person was receiving, we talk to the individuals' loved ones and carers, and we review care notes. This process helps us identify best practice that can be shared across the system.
Reporting the death of someone with a learning disability or an autistic person
It is the responsibility for all health and social care professionals to report a death of someone with a learning disability and/or autistic person to the LeDeR programme. You do not need anyone’s permission to report the death. You can report a death of someone who:
- Had a confirmed diagnosis of Autism and was aged 18 or over
or
- Had a learning disability and was aged 18 or over
To report a death, please follow this link: leder.nhs.uk/report.
The form will take about 15 minutes to complete. When reporting the death please include as much detail as possible in the notification. This form will include:
- Details of the deceased
- Details of their known NOK and contact details
- Their GP details
- The circumstances around their death
- Your details
- Your relationship with the deceased
Since July 2022 the LeDeR Programme no longer reviews the death of a child or young person with a learning disability or diagnosis of autism. To report the death of a child or young person under 18 years of age please visit Child Death Review.
More information on the role of a GP within the LeDeR Programme can be found here.
LeDeR - Learning into Action
LeDeR Governance:
We have a dedicated LeDeR Governance Group which takes place monthly. Senior health and social care representatives along with experts by experience from across Coventry and Warwickshire attend the meeting, consider findings of reviews, and oversee an action plan linked to the learning.
LeDeR Subgroup:
It was recognised that a dedicated space was needed to work on the key themes coming from the LeDeR reviews, and so our LeDeR Subgroup was launched in May 2023.
The purpose of the LeDeR Subgroup is to ensure that the broader thematic findings and SMART (Specific, Measurable, Agreed, Realistic and Timely) actions from reviews are recognised by health and social care providers across the system, acted upon, and that meaningful changes are made to improve the quality of health for individuals with a learning disability and autistic people.
Experts by experience along with Grapevine play a pivotal part in the subgroup work, enabling people with a learning disability and Autistic people to be at the heart of service improvement.
Our first theme to address in subgroup was constipation. Through a map and gap analysis of resources across the health and social care system, focus groups and collaboration with Grapevine, Communicate 2U and Coventry University we have been able to produce a constipation information and resource pack. The aim was to provide information and resources for clinicians, carers, families and people with a Learning disability and Autistic people. This is currently being shared and we look forward to evaluating the impact that this has made.
We are now in the infancy of our second theme of Pneumonia. A map and gap exercise and focus group with experts by experience is planned and the team are reviewing the data of deaths from Pneumonia. We will then be coming together as a system to plan the most appropriate course of direction.
National and Local LeDeR (Learning Disabilities Mortality Review) Reports
The reviews we carry out in Coventry and Warwickshire feed into a national annual report. You can read the most recent national report, as well as access the Easy Read Reports and videos on the King's College London website.
Coventry and Warwickshire produce an annual report that looks at key themes.
You can read our most recent 2023/24 report here:
You can also read the 2022/23 reports here:
Coventry and Warwickshire also produce quarterly reports which supplies an overview of data from the past three months, key themes and ongoing work that is happening in the system which can be found here.
LeDeR Newsletters
In March 2022 we created the first ever issue of our LeDeR newsletter. We have continued to publish this newsletter approximately every three months.
The LeDeR newsletter highlights key areas of our local LeDeR programme, including:
- Details of the number of notifications received
- Key learning taken from reviews
- Examples of positive practice
- Upcoming learning and training opportunities
- A ‘Spotlight on’ feature, detailing a topic based upon a key theme of our LeDeR learning
- Updates on relevant news and information
- Useful links and key contacts from our local LeDeR programme.
Each issue of the newsletter is circulated to key people, including members of our LeDeR Governance Group and their teams, residential home and supported living staff and GPs, amongst others.
All previous newsletters are available below, with new issues to be uploaded when available.
- 1st issue March 2022 (spotlight feature - Sepsis)
- 2nd issue July 2022 (spotlight feature - Dysphagia)
- 3rd issue October 2022 (spotlight feature – Bowel Health)
- 4th issue February 2023 (spotlight feature – Mental Capacity Act)
- 5th issue April 2023 (spotlight feature – Cancer Screening)
- 6th issue August 2023 (spotlight feature - Constipation)
- 7th issue November 2023 (spotlight feature – Dementia and Learning Disabilities)
- 8th issue February 2024 (spotlight feature – ReSPECT and DNACPR)
- 9th issue July 2024 (spotlight feature – Providers: Examples of Best Practice)
Coming soon!