Inequalities in healthcare identified

Care and Support Minister, Norman Lamb recently acknowledged that far more needs to be done across health and care to improve the treatment that people with learning difficulties receive. His comments follow the publication of a number of reports highlighting poor care, inequalities in health, as well as discrimination. Patients with learning disabilities are more likely to experience delays in diagnosis, care and treatment; reasonable adjustments are not always made; there are failures to recognise and treat pain, and they are often not involved in decisions about their care. In extreme cases, discriminatory attitudes have informed clinical decisions, arguably leading to important interventions being withheld. Following the deaths of six people with a learning disability in NHS care, the charity Mencap published Death by indifference in 2007, which exposed the unequal healthcare and ‘institutional discrimination’ that people with learning disabilities experience within the NHS. Death by indifference was to play an important role in influencing the Department of Health to commission the Confidential Inquiry into premature deaths of people with a learning disability. In March 2013, the Inquiry published the findings of its two-year investigation and found that those with learning disabilities are more likely to have a premature death compared with individuals in the general population. The findings have since led to a series of recommendations aimed at improving the quality of healthcare that people with learning disabilities receive, as well as prompting a detailed response by the Department of Health.

The scale of the problem

Researchers from the University of Bristol 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 two-year period in any of five Primary Care Trust (PCT) areas of South West England. The researchers found that men with learning disabilities died, on average, 13 years sooner than men in the general population. 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. Furthermore, people with learning disabilities were significantly more likely than the general population to die prematurely because there had been delays or problems with investigating, diagnosing and treating their illnesses. They were more likely to have problems in having their needs identified and appropriate care being provided in relation to their changing needs, while their families or carers also had more problems in getting their views heard and listened to. 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 lifestylerelated 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.”