Taking action on mortality reviews of people with learning disabilities

Bristol is now a leading institution for the study of mortality of people with learning disabilities, not only nationally but also internationally.

Reports since the 1990s have consistently highlighted that in England people with learning disabilities die younger than people without learning disabilities. Prominent amongst these was the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD), led by Professor Pauline Heslop. CIPOLD reported that men with learning disabilities died 13 years sooner than men in the general population and women died 20 years sooner. Over a third (37%) of the deaths reviewed were potentially amenable to the provision of good quality care.

CIPOLD led to some important changes at policy level for people with learning disabilities and their families. It was followed by the national Learning Disability Mortality Review (LeDeR) programme 2015–2018, with £2.1m funded by NHS England and again led by Prof Heslop.

Bristol is now established as a leading institution for the study of mortality of people with learning disabilities, not only nationally but also internationally: LeDeR was the first such national programme of mortality reviews in the world.

Through LeDeR and the work of Prof Heslop, NHS England introduced a standard process for reviewing deaths of people with learning disabilities in England. However, if service provision was to improve sustainably and reduce premature mortality, this needed to be extended into monitoring its impact and ensuring that practical recommendations and best practices were embedded nationally. Massachusetts USA, for example, had been reviewing deaths of people with learning disabilities since the 1990s and the information gathered had led to actively reducing deaths from aspiration pneumonia and from falls.

In 2018 Heslop and NHS England won Bristol/ESRC Impact Acceleration Account (IAA) funding to work in partnership with senior-level health and social care professionals. Despite the complicated range of health and social care agencies involved, this relatively small-scale project successfully started to identify processes and systems that could capture the impact of initiatives implemented as a result of the reviews, and share this information throughout the health and social care sectors.

Up to 200 relevant people attended regional workshops and started working to capture best practices and other important information. Resulting processes to capture the impact of mortality reviews were finalised through the national LeDeR programme Operational Steering Group.

The IAA-funded project also generated knowledge and understanding of working with and in multi-agency settings. The team tried to ensure that all useful information was shared as much of it was not just relevant to people with learning disabilities, but also to the wider population, for example in relation to safeguarding adult reviews, or serious incident investigations within care services.

NHS England recognised the value of this work with a year's extension to the LeDeR programme and further funding of £800,000.

As a result of this success, the National Learning into Action Group have been able to focus on taking forward targeted national actions related to findings from mortality reviews, with major stakeholders such as NHS Improvement, Royal College of Nursing, and health and care practitioners. For example, NHS Improvement / NHS England has now established an online platform, resourced and maintained by NHS England, for practitioners to share examples of actions that have been taken as a result of mortality reviews. Further examples are shared in the programme's annual reports published each spring.

During the initial implementation phase, bimonthly Learning into Action briefings focused on issues known to be problematic in relation to deaths of people with learning disabilities. These included contributions from practitioners on how they were actively addressing the issue as well as posters on the actions that could be taken.

"The impact workshops were of great value to the NHS. It was very important to plan for the learning into action phase of the programme from the outset, to ensure that appropriate frameworks were in place to ensure that completed mortality reviews actually lead to quality improvements. Attendees found the workshops valuable and utilised the frameworks described to develop their own local mortality steering groups. The presentations by Emily Lauer were hugely beneficial as we were able to learn from Boston's experiences of reducing health inequalities as a result of mortality review." – Emily Handley-Cole, London Regional Coordinator, LeDeR Programme, NHS England.

Lead researcher

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