Call for urgent change in health support for people with a learning disability

A new report released last week shows that over four times as many people with a learning disability die from treatable causes of death than compared to the general population.

The 2019 LeDeR (Learning Disabilities Mortality Review) third report shows huge inequality in the way that people with a learning disability are treated – which year after year, leads to early deaths compared to the rest of the population.

• Treatable causes accounted for 403 per 100,000 deaths in people with learning disabilities, compared with 83 per 100,000 deaths in the general population.
• Only 37% of learning disabled people lived beyond the age of 65 in 2018 compared to 85% of general population living beyond 65 years.
• Pneumonia which is a treatable illness accounted for 41% of deaths reported.
• Downs Syndrome is still being reported as a cause of death despite not being an illness.

Shared Lives Plus CEO, Alex Fox, responds, “We know that people with a learning disability face discrimination in all areas of life and this discrimination is a factor in people dying early for avoidable reasons.”

“We cannot tolerate reports year after year which show people with learning disabilities dying from discrimination and poor care. We call on Government and all those working in health and social care to treat people with a learning disability and/or Down’s Syndrome with the same respect and dignity they would treat anyone else.”

Over 10,000 Shared Lives carers across the UK already offer nearly 15,000 people an ordinary life, by sharing their home and community together. Half the people who live with, or visit a Shared Lives carer, have a learning disability and 8% have mental ill health.

Fox says, “Shared Lives carers who open their own homes to care for people, often report that they can spot signs of worsening physical conditions, and better connect people with the health system. This can improve health outcomes for people with learning disabilities and we have asked government to collect data on rates of mortality within different care settings.”

Read the full report

Notes:

• Of the deaths notified in 2019, 24% of adults and 20% of children died from bacterial pneumonia. 17% of adults and 3% of children died from aspiration pneumonia. The proportion of such deaths was greatest in people with severe or profound and multiple learning disabilities. The proportions were similar in 2019 and 2018.
• 11% of deaths have been reported ‘Down’s Syndrome’ being the cause of death. This shows lack of medical understanding about Down’s Syndrome.
• Of the deaths notified in 2019, 7% of adults and 7% of children with learning disabilities died from sepsis, which is often avoidable and treatable.