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Header image for the current page Supporting health and care services to learn from the lives and deaths of people with learning disabilities and autism

Supporting health and care services to learn from the lives and deaths of people with learning disabilities and autism

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The national learning from life and deaths reviews (LeDeR) programme aims to improve care and life expectancy for people with learning disabilities and autism by reviewing deaths to identify areas of learning, opportunities for improvement and examples of best practice.

In 2019, NHS England and NHS Improvement made additional funds available to address the backlog of unreviewed cases and increase the pace with which reviews are allocated and completed. Over a three-year period, Arden & GEM’s experienced clinical services team has undertaken 150 LeDeR reviews in a professional, timely and compassionate manner, producing actionable recommendations for service improvement.

The challenge

Research has shown that people with a learning disability or autism die earlier than the general public and do not receive the same quality of care. Data from 2018 reported that the average age at death for women with a learning disability is 27 years younger than the general population and 23 years younger for men.

The national learning from life and deaths reviews (LeDeR) programme aims to change this by reviewing deaths to identify areas of learning, opportunities for improvement and examples of best practice.

In 2019, NHS England and NHS Improvement made additional funds available to address the backlog of unreviewed cases in some CCGs and increase the pace with which reviews are allocated and completed. Part of these funds were allocated to a dedicated workforce, provided by Commissioning Support Units (CSUs) to undertake reviews and develop systems and processes.

Our approach

Arden & GEM’s clinical services team has provided support and experienced reviewers to work on the LeDeR backlog for the past three years.

The review process
Following allocation of a review case, one of our experienced health and social care professionals would begin the process of collating information. This would include:

Following a review of the information an outcome and recommendation would be produced to identify learning and any gaps in care and make recommendations for service improvement to the responsible ICS.

All reviews are entered into a standard questionnaire on a dedicated national portal which was developed for NHS England and NHS Improvement by South, Central and West CSU. This enables data to be analysed on the number of reviews and number of preventable deaths. Key themes can also be drawn out for both local service improvement and to inform national policy, for example, in cancer screening and annual learning disability assessments.

Building local relationships
By allocating reviewers to cover specific geographic areas, productive relationships could be built with local contacts including GPs, trust learning disability and safeguarding leads, and palliative care teams. Knowing who to contact and their preferred procedure for accessing notes helped the review process to run more smoothly and efficiently.

Overcoming challenges
Due to the complexity of the cases being reviewed and the resource pressures within health and care organisations, it is not uncommon for a LeDeR review to take 6 months or longer. Arden & GEM’s team of registered nurses was able to use their experience and embedded learning to overcome these challenges through practical steps such as:

The outcomes

Over a three-year period, Arden & GEM’s clinical services team was able to undertake 150 LeDeR reviews in a professional, timely and compassionate manner. Recommendations for service improvement were made from the information and evidence reviewed to improve the quality of care, reduce health inequalities and reduce premature mortality for people with a learning disability and autistic people.

In April 2022 the backlog programme was completed and responsibility for local LeDeR reviews was transferred to ICSs who must ensure that:

Learning from reviews
The CSU team has identified a number of key review themes which have implications for all partners within the health and care system, with specific recommendations made. One of the most common is a lack of engagement with cancer screening programmes. Example recommendations from a recent review for a 67-year-old lady who had learning disabilities, bipolar disorder, schizophrenia and vascular dementia – who hadn’t attended any cancer screening appointments – are shown below: