9. Reducing premature mortality in people with a learning disability

NHS England is working with a range of partner organisations with a view to seeking to provide a clear steer to commissioners about the evidence base relating to clinical interventions and service developments which are likely to have the greatest impact on reducing mortality for people with a learning disability.

Much of the evidence set out on this page reflects work in progress and we intend to develop the evidence base further over the coming months.

Extent of the problem and degree of inequality

The Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD) was published in March 2013.  The report sets out evidence in relation to the extent of health inequalities for people with a learning disability.  There are a number of case studies in the report that illustrate where annual health checking would have made a difference.

The Mencap report, Death by Indifference, has case studies where health checks might have contributed to preventing premature mortality, e.g. on page 12 (Jasseke Van Dok) and page 18 (Carole Foster).

Improving the Health and Wellbeing of People with Learning Disabilities: An Evidence-Based Commissioning Guide for Clinical Commissioning Groups (CCGs) was published in October 2012 by RCPsych, RCGP and the LD Public Health Observatory.  It provides a comprehensive guide for commissioners seeking to improve services for people with a learning disability.

Improved Intelligence

9.1   Establishment of a learning disability mortality review body

Issue: The Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD) recommended the establishment of a learning disability mortality review body alongside improved information about the causes of premature mortality for people with a learning disability.

Suggested action: NHS England will explore options for establishing a learning disability mortality review body, which could provide commissioners with improved information and intelligence to inform commissioning for people with a learning disability.

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Early Diagnosis

9.2   Promote uptake of GP health checks (Directed Enhanced Service)

Issue: An annual health check, provided for as a Directed Enhanced Service in the General Medical Services Contract, is an evidence based intervention which could have a significant impact on detecting disease amenable to intervention and also to understand the psycho-social needs of people with learning disabilities.

Suggested action: Commissioners to review information for their area on uptake and variation in Annual health checks for people with learning disabilities, to promote increased provision of annual health checks and associated action plans in general practice and increased uptake of the health check amongst people with learning disabilities.  The recently published update on uptake and variation in England regarding the annual health check, as incentivised by the Directed Enhanced Service (DES) is available here.

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9.3   Treatment

Issue: The Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (CIPOLD) identified high levels of excess mortality in people with a learning disability.  Work that NHS England has undertaken since April suggests that the causes are complex, but in part they relate to diagnostic overshadowing and access issues.

Suggested action: NHS England proposes to work with the National Clinical Director for Learning Disabilities, the public health observatory for learning disabilities and other partners with a view to identifying options for reducing premature mortality in people with a learning disability.

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9.4  Effective interventions and reasonable adjustment

Issue: There is consistent evidence that people with learning disabilities in England die much earlier than the rest of the population, and that a large proportion of these deaths are preventable.

Suggested action: Increasing evidence suggests that the inequalities in healthcare experienced by people with learning disabilities could be substantially alleviated by making reasonable adjustments to healthcare practices to ensure that people with learning disabilities can make effective use of existing healthcare programmes and interventions.  This web resource briefly outlines some systemic reasonable adjustments in primary care and acute health services.  It outlines a small number of priority interventions for health conditions with examples of good practice that may be particularly important in reducing premature mortality amongst people with learning disabilities.

Effective interventions and reasonable adjustment

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Move on to section 10: Other interventions