Independent project to help NHS reduce premature mortality for people with learning disabilities

The three-year project will be the first comprehensive, national review set up to get to the bottom of why people with learning disabilities typically die much earlier than average, and to inform a strategy to reduce this inequality.

Led by the University of Bristol’s Norah Fry Research Centre, the National Learning Disability Mortality Review Programme has been commissioned by HQIP on behalf of NHS England, and will seek to improve the quality of health and social care delivery for people with learning disabilities through a retrospective review of their deaths.

The case reviews will support health and social care professionals, and others, to identify, and take action on, the avoidable contributory factors leading to premature deaths in this population.

The 2010-13 Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD, also carried out by the University of Bristol) found that nearly a quarter of people with learning disabilities were younger than 50 years when they died, with women dying on average at a younger age than men. Elsewhere, CIPOLD reported that up to a third of the deaths of people with learning disabilities were from causes of death amenable to good quality healthcare (they could possibly have been addressed by better healthcare provision). The establishment of a national mortality review programme for people with learning disabilities was one of its 18 key recommendations.

It will form part of a raft of NHS England programmes designed to ensure that people with learning disabilities get the support and services they need, including radical plans to ensure more people are cared for in their communities instead of institutions, and work to drive up the uptake of Annual Health Checks and cancer screening, to spot and address the signs of ill health sooner.

The National Learning Disability Mortality Review Programme will work with other agencies such as the Learning Disability Public Health Observatory and the Transforming Care (Winterbourne View) Improvement Programme to reduce such health inequalities faced by people with learning disabilities.

Jane Ingham, CEO at HQIP, said: “The Confidential Inquiry into the Premature Deaths of People with Learning Disabilities set out clear evidence in relation to the extent of health inequalities for people with a learning disability. The establishment of this National Learning Disability Mortality Review Programme will provide improved information about the causes of premature mortality for people with a learning disability and provide the intelligence to drive change in practice, policy and the commissioning of services, particularly at a local level. The University of Bristol has a strong track record in this area and a firm commitment to putting people with learning disabilities at the heart of their work.”

Dr Pauline Heslop, who led the CIPOLD work and is programme manager for the mortality review programme, said: “We are delighted that health inequalities faced by people with learning disabilities are being put under the spotlight. We have seen encouraging change being made as a result of local reviews of deaths conducted as part of the confidential inquiry.”

Dominic Slowie, NHS England’s National Clinical Director for Learning Disability, said: “It is completely unacceptable that this huge inequality exists for people with learning disabilities, and this will be a vital piece of work in helping us to support everyone to lead happier, healthier lives.

“The original CIPOLD study made a big difference to the way in which professionals and organisations think about issues relating to people with learning disabilities, and has led to important changes in policy and practice at local level. Now we need to replicate this nationally.”