People with a learning disability are dying 25 years younger than the general population and are three times more likely to die avoidably. LDT is conducting a health survey to ascertain some of the trends around these statistics and help put an end to preventable deaths.
Billy Longshaw, a 22-year-old man with a complex medical history and significant learning disabilities, died last year at Stepping Hill Hospital, Stockport, from complications of an undiagnosed sigmoid volvulus, a common cause of bowel obstruction.
He went to hospital after having sudden abdominal pain and vomiting on a car journey, but was found to have mostly normal physiological observations, and his abdominal examination was considered to be normal by the junior hospital doctor who saw him. Billy was permitted to leave without basic blood tests being taken, any diagnosis being made, or serious abdominal pathology being fully excluded.
In a report to prevent future deaths that was filed last week, the coroner Chris Morris said that “on the balance of probabilities, the sigmoid volvulus which led to Mr Longshaw’s death was present (albeit at an early stage) when he was assessed in Swindon.”
Mr Morris added: “Billy’s death raises issues as to the adequacy of education provided to medical students as to the Mental Capacity Act 2005, and doctors’ of all levels familiarity with the practical application of this legislation in clinical settings and accompanying guidance such as that produced by the General Medical Council in this regard.”
Preventable deaths and learning disability
Unfortunately Billy’s case is not unique. According to the latest Learning Disabilities Mortality Review (LeDeR), reviewers found that a person's care had not met good practice standards in 42% of deaths.
The report stated that people with a learning disability are dying 25 years younger than the general population and are three times more likely to die avoidably.
It highlighted the same contributory factors that have been outlined in reports dating as far back as 2007 such as problematic or unsafe hospital discharges, diagnostic overshadowing, incomplete learning disability registers held by GPs, and lack of application of the Mental Capacity Act.
Calling time on diagnostic overshadowing
The General Medical Council defines diagnostic overshadowing in the context of learning disabilities as “symptoms of physical ill health that are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person's learning disabilities”.
As the NHS begins to recover from the Covid-19 pandemic and reorganises its services to meet an ever-growing backlog, it is a good time to re-examine care of people with a learning disability.
Experts believe that if previous health inequalities, including those affecting people with a learning disability, are not finally addressed the same people will face many more years of inequality.
For this reason, in October 2020, the Royal College of Physicians launched the Inequalities in Health Alliance that currently has over 200 member organisations. The collaboration is demanding a cross-government strategy to reduce health inequalities.
Healthcare can be compromised by communication difficulties
Reports from Public Health England show that although over 2% of the population have a learning disability; only around a quarter of adults with learning disabilities are identified in GP learning disability registers and are known to specialist learning disability services.
They also often have limited access to health information because access to healthcare can be compromised by communication difficulties, low expectations, lack of support, poor understanding of mental capacity and lack of reasonable adjustments by health services.
In addition, people with a learning disability very often rely on others such as family carers or support workers for help with access to healthcare. This access can be poor if those people are not well informed themselves or there is a high turnover of workers.
For this reason, Learning Disability Today has joined up with Jim Blair, Learning Disability Nurse Consultant, to create a five-minute survey examining the relationship between healthcare professionals and people with a learning disability.
The aim is to provide a snapshot of patients and carers’ experiences in healthcare settings and whether people with a learning disability are receiving the high standard of treatment and care they deserve.
Jim Blair said: “We can only stop avoidable deaths through education, shared learning that is embedded alongside a balance of power shift where people with learning disabilities and their families are leading service development, monitoring quality improvements, shaping education of professionals and directing policy alongside professionals.
"This panel must have real power, responsibility and accountability to make this a reality. An end to diagnostic overshadowing, poor health experiences and early avoidable deaths can happen and must happen but is only achievable through the balance of power shift. This needs to be done in memory of all those who have so sadly died preventable avoidable deaths."
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