People with learning disabilities are at an increased risk of premature death compared to the general population, according to a new report published by the Department of Health in the UK.

The findings come from a three year study which evaluated the extent of premature death in people with learning disabilities, the agency also made recommendations that could improve service of care.

The study, led by researchers at the University of Bristol, analyzed the deaths of 233 adults who had learning disabilities, 14 children who had learning disabilities, as well as 58 adults who died at the same time without learning disabilities.

They found that people who had learning disabilities were more likely to have a premature death compared to the general population. Men with learning disabilities died 13 years younger than the general population, on average – women die 20 years earlier.

Only 9 percent of the general population died before the age of 50, as opposed to an overwhelming 22 percent among those suffering from learning disabilities.

After reviewing cases of premature deaths among people without learning disabilities (comparator cases), who were of similar age, lived in the same area, and had other similar risk factors to the those with learning disabilities, the researchers found that the comparator cases were more likely to die prematurely from lifestyle factors, while those with learning disabilities tended to die early because of problems and delays with their diagnoses and treatments.

People with learning disabilities urgently need more effective treatment and care, the investigators emphasized. Many of these premature deaths could be avoided, they added.

The lead author of the study, Dr Pauline Heslop, 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.”

The recommendations include:

  • Better identification of people with learning disabilities
  • Prompt provision of ‘reasonable adjustments’.
  • A health professional co-ordinating and caring for people with numerous health conditions along with consistent use of portable patient or carer-held health records.
  • Identifying effective advocates to help people with learning disabilities access health services.
  • Establishing a National Learning Disability Mortality Review Body to review the deaths of people with learning disabilities.
  • The routine collection of data concerning the cause and age of death of people with learning disabilities.

Dr Pauline Heslop concluded:

“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.”

Mencap, a UK organization that works with people with a learning disability to change laws, challenge prejudice and support them to live their lives as they choose, said of the latest report:

“Mencap strongly supports all the recommendations of the Confidential Inquiry. People with a learning disability have a right to receive the same quality of healthcare as anyone else. We welcome and join the Confidential Inquiry’s call for the establishment of a National Learning Disability Mortality Review Body in England to continue monitoring deaths of people with a learning disability in the NHS.

We believe that lessons must be learned from the findings and implemented throughout the NHS as a matter of urgency.”

According to Mencap, 1,238 children and adults with learning disabilities die across England every year because they are not getting the right health care.

Municipal and health services have been criticized for several years in England regarding the provision of planning services and personalized care for people with learning disabilities. A 2009 review found that local councils and PCTs (Primary Care Trusts) needed to plan better for the needs of people with a learning disability.

Written by Joseph Nordqvist