Are we really learning from preventable deaths?

Helen Cairns, Certitude’s Treat Me Right! Project Manager responds to the LeDeR Programme Report…

It seems unthinkable that 10 years on from Death by Indifference and 5 years after the Confidential Inquiry into the Deaths of People with Learning Disabilities, people who have learning disabilities and autism are still dying younger than the rest of the population, with more than a quarter of people dying before they reach the age of 50. For any other group in society, this would be seen as nothing less than a national scandal.

The Learning Disabilities Mortality Review (LeDeR) programme was introduced to monitor the deaths of people with learning disabilities. Formed in 2015 in response to the Confidential Inquiry, they have been tasked with training local investigators to review all deaths of people with learning disabilities to identify learning from each one.

Their Annual Report published today makes for upsetting and frustrating reading. Both by the fact that people with a learning disability are continuing to die younger than the general population and die from preventable causes, and that frustratingly so little has changed.

A couple of things strike me from reading the report. Firstly, the review process seems unfit for purpose. 1000 reviewers have been trained, a similar number of deaths have been reported, but only 103 reviews have been carried out. 35% of these reviews didn’t identify any learning.  Only 13% of these reviews identified that the death investigated was caused by delays or gaps in treatment, organisational issues or neglect.  The report cites that many reviewers do not have time to complete the reviews alongside their duties. It is clear that more investment must be made in getting these reports completed in a timely manner and in a way that allows for maximum learning.

It is shocking that Down’s syndrome is listed as a cause of death for 25 people.  Down’s syndrome is not an illness or a cause of death. It is a condition that many people live with that can have associated health issues. The fact that it is listed as a cause of death shows a continuing pervasive culture across health and social care, that stops people looking past individual conditions and overshadows medical issues that could be easily treated. The sheer number of recent inquests into the premature deaths of people with learning disabilities and autism indicates just how deep rooted this culture is.

10 years on from Death By Indifference, the median age of death for people with a learning disability is 56 for women and 59 for men. This is unacceptable. 

The three main themes identified in the report highlight inter-agency collaboration and communication, and basic awareness of the Mental Capacity Act and the needs of people with learning disabilities, yet the recommendations that have been made are the same ones that have been made for the last 10 years. Recommendations that are so rudimentary and basic – more information sharing, Health Action Plans, a record of reasonable adjustments, Learning Disability Awareness training for all acute staff and effective use of the Mental Capacity Act.  What this report doesn’t say is why collectively we are still unable to put these into practice across health and social care.

As Certitude’s Treat Me Right! project moves into its 10th year, we vow to carry on doing whatever we can to address this inequality. We pledge to never, ever stop championing the rights of those with learning disabilities and autism to an equal life, a good life, a healthy life, a valued life.

Helen Cairns
Treat Me Right! Project Manager