People with learning disabilities die 16 years sooner on average than the general population and more than a third of these deaths are down to people not getting the right healthcare, official research has concluded.

This equates to more than 1,200 children and adults with a learning disability dying prematurely every year, learning disability charity Mencap has claimed.

Some of the most common reasons for the disparity in mortality are delays or problems with investigating, diagnosing and treating illnesses in people with learning disabilities, according to the confidential inquiry into the premature deaths of people with learning disabilities (CIPOLD) study, led by academics at the University of Bristol and funded by the Department of Health.

People with learning disabilities were also more likely to have problems in having their needs identified and appropriate care being provided if their condition changed. Their families or carers had more problems in getting their views heard and listened to.

The CIPOLD review found evidence that the quality and effectiveness of health and social care given to people with learning disabilities is deficient in a number of ways, and that premature deaths could be avoided by improving the quality of the healthcare they receive.

Researchers found that men with learning disabilities died, on average, 13 years sooner than men in the general population. Meanwhile women with learning disabilities died, on average, 20 years sooner than women in the general population. Overall, 22% of the people with learning disabilities were under the age of 50 when they died compared with just 9% of people in the general population.

Researchers from the University of Bristol's Norah Fry Research Centre and School of Social and Community Medicine, together with colleagues from NHS Bristol and the Royal College of General Practitioners, reviewed the sequence of events leading to all known deaths of 233 adults with learning disabilities, 14 children with learning disabilities and 58 comparator cases (adults without learning disabilities who died in the study area during the same period of time). All deaths occurred over a 2-year period in any of 5 primary care trust areas of southwest England.

Dr Pauline Heslop, the study's lead author at the 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.”

 

The report makes a number of key recommendations including:
• The need to identify people with learning disabilities in healthcare settings, and to record, implement and audit the provision of ‘reasonable adjustments’ to avoid their serious disadvantage
• A named health professional to co-ordinate the care of those with multiple health conditions, aided by the routine use of portable patient or carer-held health records and the continuing involvement of specialist healthcare staff, who can work with the individual on a long-term basis
• The identification of effective advocates to help people with learning disabilities access healthcare services
• Proactive planning for the future and anticipating needs, rather than responding in a crisis
• Better adherence to the protection of the Mental Capacity Act. There is a need for greater awareness of professional responsibility and further work at national and local levels to support conformity to its requirements
• Guidelines for orders not to attempt cardiopulmonary resuscitation on a person to be revised and clarified
• The routine collection of data that provides information about the age and cause of death of people with learning disabilities at national level
• The establishment of a National Learning Disability Mortality Review Body to take forward the reviews of deaths of people with learning disabilities.

Jan Tregelles, Mencap’s acting chief executive, said: “A scandal of avoidable deaths on the scale of Mid-Staffs takes place every year for people with a learning disability in the NHS. These deaths, caused by poor care and delays in diagnosis and treatment, highlight the scale of discrimination faced by disabled patients in the NHS.

“Mencap supports the Confidential Inquiry’s recommendations and we are calling on the Government to set up a national body to monitor and investigate the deaths of people with a learning disability, so we can learn from mistakes and stop this tragic waste of life.”

The CIPOLD executive summary available to download here: