People with learning disabilities are four times more likely to die from a treatable health condition compared with the general public, a new report has shown sparking criticism from experts the government is not doing enough to prevent avoidable deaths.
The annual Learning Disabilities Mortality Review (LeDer) report by experts at the University of Bristol reveals a stark contrast in the care, treatment and safety of people with learning disabilities compared to the general population.
It found 34 per cent, of the 3,060 deaths reported in 2019, were from treatable conditions compared to just eight per cent of the general population.
In more than 120 cases the care people received was so bad it significantly affected their wellbeing and may have “directly contributed” to their death. This was often linked to delays in treatment and omissions in the care provided.
The LeDer team said their fourth annual report showed some progress in improving care for people with learning disabilities but it added: “We cannot ignore the fact that two out of every five reviews (44 per cent) completed in 2019 indicated that the person’s care was not of a standard that meets good practice. We can and must do better than that.”
They added the responses to recommendations nationally “has been insufficient and we have not seen the sea change required”.
“It is long over-due that we should now have concerted national-level policy change in response to the issues raised in this report and previous others. A commitment to take forward the recommendations in a meaningful and determined way is urgently required.”
In total, 7,145 deaths in England were reported to the LeDer team between July 2016 and December 2019.
Potentially avoidable contributory factors to a death relating to the person’s care and its provision were identified in 61 per cent of deaths.
The national programme was set up in 2015 to try and examine why people with learning disabilities have a higher mortality than the general public and to try and improve the care they receive.
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They are calling for more focus on the reporting of deaths to coroners and the creation of new specialist physicians for people with learning disabilities.
Connor Sparrowhawk, aged 18, drowned in a bath at Southern Health Foundation Trust in 2013. The trust was later prosecuted and his death helped reveal widespread failings at the trust.
His mother Dr Sara Ryan, told The Independent: “It’s been seven years since the Confidential Inquiry was published and five years since the LeDer programme began. The latest figures highlight the abject failure of government to respond to what is a sustained and systematic disregard for particular people. I feel sickened and ashamed.”
Paula McGowan’s son Oliver died rin 2016 after doctors prescribed him anti-psychotic medication against his and his parents wishes. He had a reaction to the drug which left him brain damaged.
His mother has campaigned for better awareness and training of health professionals about patients with learning disabilities.
She said: “LeDeR has without doubt exposed inequalities of health care for a certain group of people, this group of people have a label attached to their being, learning disability. A learning disability is a different way of learning, it is not a medical condition and yet, a third of these people die horrendous preventable deaths simply because they are not given adequate health care.
“LeDeR has exposed discrimination and bias towards these vulnerable people. It is now the fourth LeDeR report, year after year LeDeR is exposing the same issues. The actions are clearly not working, they are not adequate in preventing future deaths.”
This year’s report found only 37 per cent of people with a learning disability live beyond the age of 65, compared with 85 per cent of the general public.
Men with a learning disability die 22 years earlier than men in the general population. For women the gap is 27 years.
People from black and minority ethnic communities also died at disproportionately younger ages than white British people. Of those who died in childhood (4-17), 43 per cent were from BAME groups.
The most frequently recorded treatable causes of deaths were pneumonia, epilepsy and heart disease.
In parliamentary statement, care minister Helen Whately said addressing “the persistent health inequalities faced by people with learning disabilities is a priority for this government”.
She added: “I am clear that we must tackle the issues raised in the LeDeR report.”
NHS England said it was planning to set up seven “exemplars” to “trail blaze” new ways of working to improve care for patients. This would include increasing the number of annual health checks and the number of flu jabs for people with learning disabilities. It is also training training 5,000 paid and unpaid carers to spot signs of deterioration in people with a learning disability.”