Confidential Inquiry into premature deaths of people with learning disabilities: Response to paper published in The Lanc

The Confidential Inquiry into premature deaths of people with learning disabilities, conducted by researchers at the University of Bristol's Norah Fry Research Centre, highlighted the unacceptable situation in which up to a third of the deaths of people with learning disabilities were from causes of death amenable to good quality healthcare.

The report was published in March 2013 but its findings, which remain very topical in light of reviews conducted at Winterbourne View hospital and Mid-Staffordshire NHS Foundation Trust, have been published today [11 Dec] in The Lancet.

Using data drawn from the Confidential Inquiry, Professors Glover and Emerson of the Improving Health and Lives Learning Disabilities Observatory, estimate that about 25 people with learning disabilities die each week from causes of death wholly or partly amenable to good quality healthcare.

Dr Pauline Heslop, Principal Investigator for the Confidential Inquiry, argues that we cannot afford to be complacent about this scale of problem. Dr Heslop says: "By the end of the current financial year, £2.7bn will have been axed from English councils' budgets for adult social care in the past three years. This is highly likely to be exacerbating the problems that people with learning disabilities face at the community, primary and secondary care interfaces and the coordination of their care needs.

"The Department of Health published its response to the Confidential Inquiry in July 2013, and although it has accepted many of the recommendations of the Inquiry and there is an action plan in place, progress in making significant change by the Department of Health and NHS England has been slow. We saw immediate and concerted attention being taken in response to the circumstances at Winterbourne View and Mid Staffordshire NHS Trust, but a similar degree of urgency appears not to have been paid to the findings of the Confidential Inquiry into premature deaths of people with learning disabilities.

"The recommendations of the Confidential Inquiry align in many ways with initiatives for other patient groups and we welcome, for example, the forthcoming changes to the GP contract for patients with complex health and care needs for whom there will be more proactive care management, personalised care plans and a named GP and care coordinator. We need to stop thinking about people with learning disabilities in a silo - if we could get healthcare access and service provision right for them, we could get it right for everyone."