People with learning disabilities are more likely to die prematurely, inquiry finds

BMJ 2013; 346 doi: (Published 20 March 2013) Cite this as: BMJ 2013;346:f1853
  1. Ingrid Torjesen
  1. 1London

People with learning disabilities are dying on average 16 years earlier than people in the general population in England because the NHS is failing to treat them adequately, an inquiry has found.

The Department of Health commissioned researchers at the University of Bristol to undertake a confidential inquiry to assess the extent of premature death among people with learning disabilities and offer guidance on its prevention.1

The researchers reviewed the sequence of events leading to all known deaths of 233 adults and 14 children with learning disabilities occurring over a two year period in five primary care trusts in southwest England and compared them with 58 comparator cases (adults without learning disabilities who died in the study area during the same period of time).

Overall 22% of people with learning disabilities were found to have died before they reached the age of 50, compared with just 9% of the general population. People with learning disabilities died more than 16 years younger than those in the general population, with the gap being greater among women than men. Women with learning disabilities died on average 20 years sooner, and men with learning disabilities 13 years sooner, than their general population counterparts.

The researchers deemed 42% of the deaths of people with learning disabilities premature. However, unlike the general population, where premature deaths were blamed on lifestyle factors such as smoking, the researchers attributed premature death among people with learning disabilities to delays or problems in diagnosis or treatment and to problems identifying their needs and providing appropriate care in response to changing needs.

The review found evidence that the quality and effectiveness of healthcare and social care of people with learning disabilities was deficient in several ways and that many premature deaths could have been avoided if the quality of the healthcare they received were better. The families and carers of people with learning disabilities also often reported that health professionals didn’t listen to them and take them seriously.

Pauline Heslop, the study’s lead author and a senior research fellow at the University of Bristol’s Norah Fry Research Centre, said, “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.”

Asked at a briefing to state the inquiry’s findings about what needed to be done to improve the care of people with learning disabilities, Heslop said, “People with learning disabilities are largely hidden, particularly within hospital records; and until we identify them and clearly document the reasonable adjustments that people will need to receive healthcare equitably, then actually I think this situation will continue—so that would be our first recommendation.”

Peter Fleming, professor of infant health and developmental physiology at the University of Bristol and one of the authors, said, “One of our main recommendations is that we flag the central NHS records system for everybody with a learning disability so that whenever they are seen by any health service organisation there will be an automatic reminder coming up to say this person has a learning disability and give some idea of what the adjustments that they need might be.”

Heslop added that because the population of people with learning disabilities was so difficult to identify, it was important to establish a national learning disability mortality review body to monitor the number of deaths in this group and their causes.

The report also recommends that the care of people with learning disabilities who have several illnesses be coordinated by a named health professional, aided by the routine use of portable or carer held patient records and the continuing involvement of specialist healthcare staff, who could work with the patient on a long term basis.

It adds that services should use annual health checks to develop health action plans to anticipate and plan for future care needs rather than responding in a crisis. Furthermore, adherence to the Mental Capacity Act was generally poor, so it recommends far greater awareness of professional responsibility to support adherence.

From the findings of the confidential inquiry the charity Mencap estimated that 1238 adults and children die in England each year because they were not getting the right care.

Jan Tregelles, its 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.”


Cite this as: BMJ 2013;346:f1853