The Learning Disabilities Mortality Review Annual Report was published recently by the Healthcare Quality Improvement Partnership. In it are harrowing statistics of people with learning disabilities dying far too young.
The report highlights the extraordinarily high incidences of preventable death. The Connor Sparrowhawk case has brought this to public attention recently: a young man with learning difficulties left in a bath unattended, he drowned whilst having an epileptic fit.
Between July 2016 and November 2017, 1311 deaths were put forward for review, often by a Learning Disability Nurse. Of those, 27% of people had mild learning difficulties, 33% moderate needs, 29% severe learning disabilities, and 11% profound or multiple learning disabilities.
Of the 1311 cases, only 103 have been reviewed. And in these reviewed cases, it was found that there were failings in 1 in 8, meaning the deaths could have been prevented.
Reviewers indicated that in 13 [cases] the person’s health had been adversely affected by one or more of the following: delays in care or treatment; gaps in service provision; organisational dysfunction; or neglect or abuse.
As a Board member of the Fragile X Society this is an issue close to my heart. People with learning difficulties die on average 15-20 years sooner than those without learning disability. Why should someone with learning difficulties not have as fulsome and long a life as a person without?
The median age at death of people with learning disabilities (aged four years and over) was 58 years (range 4-97 years). For males it was 59; for females 56. More than a quarter (28%) of deaths were of people aged under 50 years.
People with profound or multiple disabilities had a median age at death of 41 years; those with mild or moderate learning disabilities had a median age at death of 63 years.
There were 189 recommendations. A lot needs improvement. These include:
- Health Action Plans, developed as part of the Learning Disabilities Annual Health Check should be shared with relevant health and social care agencies involved in supporting the person (either with consent or following the appropriate Mental Capacity Act decision-making process).
- All people with learning disabilities with two or more long-term conditions (related to either physical or mental health) should have a local, named health care coordinator.
- Providers should clearly identify people requiring the provision of reasonable adjustments, record the adjustments that are required, and regularly audit their provision.
- Local services must strengthen their governance in relation to adherence to the Mental Capacity Act, and provide training and audit of compliance‘on the ground’ so that professionals fully appreciate the requirements of the Act in relation to their own role.
My lived experience is that people with learning difficulties face much stigma and discrimination. They are hampered in living life to the full by limitations put on them by others, not by their difficulties. We need to see the person, not the disability, or diffability as some like to say. We, as Liberal Democrats, fight for equality, and that includes equality for those with learning difficulties.
* Kirsten Johnson is an Oxfordshire County Councillor and Day Editor for Lib Dem Voice. She stood as the Parliamentary Candidate for Oxford East in the 2017 General Election.