Patient safety

Premature learning disability deaths due to ‘deficient’ care

People with learning disabilities can die up to 20 years earlier than the general population, new data shows.

The confidential inquiry into the premature deaths of people with learning disabilities (CIPOLD) study found that people with learning disabilities are more likely to die prematurely due to deficiencies in care.

The three-year study was funded by the Department of Health and led by the University of Bristol. Researchers reviewed the sequence of events leading to all known deaths of 233 adults with learning disabilities, 14 children with learning disabilities and a comparator study of 58 adults.

CIPOLD found that men with learning disabilities died on average 13 years sooner than the general population and women 20 years earlier. Overall, 22% of people with learning difficulties were under 50 when they died.

Whilst the general population are more likely to die prematurely of conditions associated with unhealthy lifestyles, people with learning disabilities are “significantly more likely” to have delays or problems when investigating, diagnosing and treating their illnesses. Their quality of care was “deficient” in a number of ways, researchers found.

The report recommends having a single named health professional to coordinate care of those with multiple health conditions, better adherence to the protection of the Mental Capacity Act, routine collection of data on age and cause of death and the establishment of a National Learning Disability Mortality Review body.

Dr Pauline Heslop, the study's lead author at the University of Bristol Norah Fry Research Centre, said: “This report highlights the unacceptable situation in which people with learning disabilities are dying, on average, more than 16 years sooner than anyone else. The cause of their premature death is not, like many in the general population, due to lifestyle-related illnesses. The cause of their premature deaths appears to be because the NHS is not being provided equitably to everyone based on need.

“People with learning disabilities are struggling to have their illnesses investigated, diagnosed and treated to the same extent as other people. These are shocking findings and must serve as a wake-up call to all of us that action is urgently required.

“We have, over the past few years, been rightly horrified by the abuse of people with learning disabilities at Winterbourne View hospital and of vulnerable patients at Mid-Staffordshire. The findings of the confidential inquiry into the deaths of people with learning disabilities should be of no less a concern.”

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