May 6, 2021

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The future of the LeDeR programme: partnerships are key

Arthur Calder, Head of Clinical Services

At the end of March, NHS England published a report by Ipsos Mori which considered the future of the Learning Disability Mortality Review programme (LeDeR) programme. The report was removed from the website shortly after publishing and has not been republished at the time of writing this blog.

The LeDeR programme was set up in 2015 to support improvements in health and care for people with learning disabilities as well as reduce premature mortality and health inequalities for this population. It has been criticised for large backlogs in the review process and consequent delays to findings.

We have supported the LeDeR programme by undertaking reviews across North West London, South East London, Lincolnshire, Humberside and Yorkshire. We have a large and highly experienced workforce made up of reviewers as well as professional administrative support able to navigate the complex challenge of gathering evidence for reviews.

Our services have ensured that commissioners confirm compliance across all quantitative and qualitative metrics.

We have previously noted a number of challenges of the programme – many of which were reflected in the Ipsos Mori report:

  • Many reviewers are undertaking reviews on top of their day job and may only be given a small number each year, which means efficiencies of scale are not realised, and neither is a consistency in approach
  • Because there is no dedicated professional workforce responsible for undertaking these reviews, reviewers are unable to benefit from insight gained through considering and reflecting on a large number of cases
  • The lack of dedicated workforce also means findings are not followed through to policy and implementation. The lack of challenge to recommendations suggests they are not being seen as a critical resource in design of services and care for people with learning disabilities.
  • There is a lack of awareness of the programme amongst clinicians and this can result in confusion when they are asked to provide evidence into a review

It is encouraging to see alongside this report a new policy from NHS England which shapes the future of the LeDeR programme. The move for reviews and the programme to sit with each Integrated Care System (ICS), announced in the new NHS England policy, is a positive one. By commissioning this programme through ICS structures there is an opportunity to create scale for reviews both in terms of workforce and insight. ICSs have the reach and structure to follow recommendations through such that they are considered and understood in a meaningful and practical way. This has the potential to result in actionable changes which improve how health and care for people with learning disabilities is provided and further developed.

In a few months, reviews will be streamlined via a national database for all LeDeR cases. When it goes live in June, all case work will be allocated through this system. While this transfer process will result in a gap in both data and reviews between April and June, it’s critical that resources are in place to take on reviews as soon as the system is live.

Our view is that the LeDeR programme, in its current state, lacks the required partnership approach between a dedicated workforce of reviewers and specialist administrative teams, clinicians, families, experts and policy makers. There is an efficiency as well as a compassion that this relationship can bring, and it also allows for learnings to truly be implemented. These skills and expertise need to exist as a dedicated resource rather than an additional ask for staff. Positively, the move to operating under the ICS model could allow this type of capability to commissioned at scale. Ultimately, successful partnerships will improve the programme for the workforce, clinicians caring for people with learning disabilities and critically, people with learning disabilities and their families themselves.

As originally seen on LinkedIn

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