Could the issue of too many people with a learning disability dying earlier than they should, have been prevented with better or alternative treatment? The learning from deaths of people with a learning disability (LeDeR) programme reviews the reasons for deaths of people with a learning disability either physical or mental health. It looks at why people are dying and what can be done to change services locally and nationally to improve health outcomes for people with a learning disability and reduce health inequalities.
These reviews are conducted by LeDeR reviewers, who are registered health professionals with a wealth of knowledge and experience, having also completed training to carry out mortality reviews. People with a learning disability can suffer from poorer health than others both physical and mental. These reviews consider the circumstances and situation surrounding the death.
The review is in no way a judgemental or investigative process, more an insightful look at the individual’s life experience, who they were as a person, their engagement with services and their life leading up to their death. All of which are gathered from the services that were involved in their care, family, carers and their GP, painting a picture of what worked well and what could have worked better, drawing up recommendations of learning that the Clinical Commissioning Group (CCG) can then deliver to a Governance Panel to improve practice in real-time.
To support these investigations, we provide regional support to completing reviews for the Learning Disability Mortality Review (LeDeR) Programme for CCGs. High-quality LeDeR reviews have been delivered in a timely manner to our customers. For example, we were asked by NHSE South West to carry out a rapid review to understand constipation and its management in people with a learning disability and autistic people. This allowed recommendations to be developed in a shorter timeframe at a time when services were focused on the COVID-19 pandemic response.
We pride ourselves on the positive reputation that we have developed, with most of our customers engaging with our services following recommendations. We offer a bespoke LeDeR review service and work in partnership with various areas to deliver high-quality LeDeR reviews aimed at informing meaningful service improvements for people with a learning disability and autistic people (LD&A).
Our reviews put patients first and help make health and care services better for people with a learning disability and autistic people.
Alongside this, we provide the ongoing development of the LeDeR platform, including the redaction and coding of all LeDeR reviews submitted from all CCGs to provide the data for the LeDeR report that is published on an annual basis.
We are committed to improving the lives of people living with LD&A. As part of this, we also engage with local and national programmes such as the Transforming Care Agenda in supporting the development and engaging in quality reviews of Care and Treatment Reviews (CTRs) as well as leading on subject-specific research and thematic reviews. Currently, an interesting area of work is a partnership project with Southwest to collate and thematically review CTRs to identify learning points and good practice to support service development.
We strive to be aspirational in our delivery in the LD&A community and are committed to working in partnership, where we can share our learning and experience pulled straight from working around LeDeR in such a concentrated capacity, from experienced reviewers, alongside a range of CCGs and national stakeholders.
For more information about the Learning Disability Mortality Review (LeDeR),
