Dr Ben Thomas looks at the case of Richard Handley and how important it is for the system to learn from its mistakes.
Many of us will have been saddened to hear about the tragic death of Richard Handley. I also felt disappointed that the system had yet again failed a vulnerable person with learning disabilities and complex needs.
The how and why Richard’s death occurred have been addressed in a serious case review published in October 2015, and last week the coroner referred to the death as resulting from a missed opportunity and gross failures in the system.
Lessons have been learned and the local health and social care organisations involved in his care report that they accepted the recommendations from the serious case review and that local services for people with learning disabilities have improved.
The National Guidance on Learning from Deaths published by the National Quality Board in 2017 makes it clear that reviews and investigations are only useful for learning purposes if their findings are shared and acted upon.
“Overall, people with learning disabilities currently have a life expectancy at least 15 to 20 years shorter than other people”
Since September 2017 every Trust should have a policy in place that sets out how it responds to and learns from the deaths of patients who die under its management and care.
Rightly so, the deaths of people with a learning disability are identified as requiring additional scrutiny across all settings. In England we have known for some time that people with learning disabilities die younger than the general population. Richard was 33.
The Confidential Inquiry of 2010-2013 into premature deaths of people with learning disabilities (CIPOLD) reported that for every one person in the general population who died from a cause of death amenable to good quality care, three people with learning disabilities would do so.
Overall, people with learning disabilities currently have a life expectancy at least 15 to 20 years shorter than other people. Importantly for nurses and other healthcare staff, CIPOLD reported that up to a third of the deaths of people with learning disabilities were from causes of death which could have possibly been prevented by better healthcare provision.
The establishment of a national mortality review programme for people with learning disabilities was one of its 18 key recommendations.
“Sadly this is all too late for Richard and his family, but not for others”
In June 2015 the National Learning Disability Mortality Review Programme (LeDeR) was launched. The three year programme was set up to address these unacceptable health inequalities and ultimately reduce premature deaths of people with learning disabilities.
The National Review aims to uncover 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 (LeDeR) has been commissioned by the Health Quality Improvement Partnership (HQIP) on behalf of NHS England, and seeks to improve the quality of health and social care for people with learning disabilities through a retrospective review of their deaths.
The Mortality Review will support nurses and other health and social care staff, to identify, to learn and most importantly to take action on the avoidable contributory factors leading to premature deaths in this population. Sadly this is all too late for Richard and his family, but not for others.
We must make the most of this opportunity and together with other quality improvement programmes take action to make changes that reduce health inequalities in health and social care.
We must ensure that people with learning disabilities receive the high quality, effective health care they need.
Dr Ben Thomas is professor of mental health and learning disabilities at London South Bank University. Ben is also a member of the Independent Advisory Group for the Learning Disability Mortality Review.