Learning from lives and deaths – People with a learning disability and autistic people (LeDeR)

Annual report and action from learning reports 2021/22

The NHS Long Term Plan made a commitment to continue LeDeR and to improve the health and wellbeing of people with a learning disability.

This annual report, the first from our new academic partners led by Kings College London, provides information about the deaths of people with a learning disability aged four years and over notified to the programme. An easy read version of the report is also available.

This action from learning report identifies some of the work across the NHS in the past year to address the findings from LeDeR reviews, improve care and prevent premature mortality. An easy read version of the report is also available. With LeDeR governance groups across England reviewing deaths and taking actions to improve services, we cannot describe everything that is being done, but we give an idea of the scope and scale of the improvements being made thanks to the learning from LeDeR reviews; learning that is greatly aided by the contribution of families and carers of people who have died.

To accompany these reports a list of resources has been produced to support local systems to understand the wider context of their action from learning, to make improvement and to share good practice. It includes guidance from our national partners, including those which describe the required standards for providing and monitoring care, and examples and links to resources created by services and their partners through action from learning.

LeDeR policy 2021

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 which has been delivering the programme from June 2021. It serves as a guide to professionals working in all parts of the health and social care system on their roles in delivering LeDeR.

This policy outlines a number of changes to previous LeDeR processes. Some of these changes, such as the new review process, will need to be implemented by local systems in line with the changes to the web-based platform. Other changes, such as staffing models and local governance arrangements will need to change in line with the development of integrated care systems and relevant human resources processes. By 1 April 2022 all changes within this policy must be implemented by integrated care systems.

The policy has been co-produced with bereaved family members, people with a learning disability, health and social care professionals and people from across the LeDeR workforce. We also commissioned self-advocacy groups to work with us on some of the challenging questions about the future of the programme and Ipsos Mori to do a piece of research on the views of our stakeholders.

This work has enabled programme developments and LeDeR policy to be shaped by the people at the heart of this work.

People with a learning disability often have poorer physical and mental health than other people and may face barriers to accessing health and care to keep them healthy. Too many people with a learning disability are dying earlier than they should, many from things which could have been treated or prevented.

The learning from deaths – people with a learning disability and autistic people (LeDeR) programme was set up as a service improvement programme to look at why people are dying and what we can do to change services locally and nationally to improve the health of people with a learning disability and reduce health inequalities. By finding out more about why people died we can understand what needs to be changed to make a difference to people’s lives.

What is a LeDeR review?

Integrated care systems are responsible for ensuring that LeDeR reviews are completed based on the health and social care received by people with a learning disability and autistic people (aged four years and over) who have died, using the standardised review process. This enables the integrated care systems to identify good practice and what has worked well, as well as where improvements in the provision of care could be made. Local actions are taken to address the issues identified in reviews. Recurrent themes and significant issues are identified and addressed at a more systematic level, regionally and nationally.

A LeDeR review is not a mortality review. It does not restrict itself to the last episode of care before the person’s death. Instead, it looks at key episodes of health and social care the person received that may have been relevant to their overall health outcomes. LeDeR reviews take account of any mortality review that may have taken place following a person’s death.

LeDeR reviews are not investigations or part of a complaints process, and any serious concerns about the quality of care provided should be raised with the provider of that service directly or with the Care Quality Commission (CQC) via their online system.

Every person with a learning disability whose death is notified to LeDeR will have an initial review of the health and social care they received prior to their death. Using their professional judgement and the evidence available to them, the reviewer will determine where a focused review is required. The person’s family has the right to request a focused review. Focused reviews will also be completed for every person from a minority ethnic background.

Reporting the death of a person with a learning disability

Anyone can notify a death to LeDeR and the more deaths we are aware of the more accurate the information we have will be.

To report a death please use the online form on the LeDeR website.

Restore2™ mini project

The Restore2™ mini project was set up to help carers and families to spot when someone they care for with a learning disability is unwell. The project aimed to improve identification of ‘early warning signs’ to ensure health concerns of people with a learning disability are taken seriously and help healthcare professionals quickly respond to concerns.

The project introduced a ‘train the trainer’ programme, working with third sector partners. By the end of May 2021 more than 7,000 paid and unpaid carers had been trained in Restore2™ mini. This tool has been adapted from Restore2™, an award-winning tool to recognise the soft signs of physical deterioration and to improve communication between carers, healthcare staff and GPs, for use with people with a learning disability.

A Task and Finish group, chaired by a person with a learning disability, worked with learning disability charities and the West of England and Wessex Academic Health Science Networks to ensure the project was delivered. Health Education England (HEE) and lived experience representatives were also integral to the development of materials and delivering the training. Due to the project’s success some partners are now including this training in their induction training for all new care staff, and the Down’s Syndrome Association plans to offer it to family carers in their network.

If you wish to have access the materials used for the training please contact the National LeDeR team on the following email address – england.lederprogramme@nhs.net and you will be given access to a specific area of the Learning Disability Mortality Network FutureNHS site where the materials can be accessed.

Carers discussing the training they received with a University of Northumbria researcher.

“As we are carers what we can’t do is attend distance training, go to exhibitions, travel, etc. It was the first time that training came to us. Now there is a way of understanding what we need to help us fulfil our caring role.”

“This course was so useful – I can’t stop recommending it to friends and family.”

A carer discussing how they’re using the training they received with a University of Northumbria researcher.

“Every time I have somebody new on my caseload… I do a Restore 2 now, and I ensure that… the carers know their soft signs. And I escalate it to the GP. And say, “I’ve done these Restore 2 documents” so that you know if somebody is deteriorating.”