Embarrassingly, the English National Health Service discovered earlier this year that the service it provides for people with learning (or intellectual) disability is not up to the standard it should be and that there is an excess of premature deaths due to avoidable factors. This is the conclusion of a confidential enquiry commissioned by the government in response to previously expressed concerns, including a trigger article published in DMCN.1 The Confidential Inquiry into Premature Deaths of People with Learning Disability (CIPOLD) covered a population of nearly 1.7 million in the South West of England and investigated the deaths of people aged over 4 years with learning disability.2 The first striking finding was that there were more than twice the expected number of deaths in this group, nearly all in adults. The second important finding was that the median age at death was reduced whatever the IQ level, in contrast to epidemiological data from Finland which showed that people with mild or moderate intellectual disability did not have a reduced life expectancy.3 Many of the people investigated had additional impairments such as physical disability, but no separate analysis was provided based on additional clinical features except that as in other studies, those with Down syndrome had a significantly earlier age of death than those with learning disability from other causes. Overall, the major causes of death, cancer, heart and circulatory disorders, and the proportion of unexpected deaths (i.e. unanticipated in the 24h before death [e.g. due to stroke]) was the same as in the general population. However, more deaths were classified as premature, due to delays in assessment, investigation, or treatment, and to problems with identifying needs. In trying to understand why this happens, the inquiry looked at professional data and family perspectives. While premature death was more likely in people who were socially isolated, the majority were still in people living in residential care homes. Most had had annual health checks, but the quality was very variable. A major issue was that during acute events families felt they were not listened to appropriately, particularly by doctors. In addition, guidelines on end of life care were not followed correctly, although this has been the subject of separate recent concerns in the wider population.4 Overall, the CIPOLD report identified inadequate adherence to established care pathways, fragmented care between medical specialties, and difficulties at the interface between health and social care, but most of all attitudinal problems. While there are a number of publications on the effects of education on the attitudes of healthcare students to disabled people, there is surprisingly little on the attitudes of qualified professionals or whether, where less than positive attitudes exist, training can improve or change them.5, 6 It is difficult to find similar information from other countries. In the UK, coordination of care, especially for adults, relies on doctors in general practice who are responsible for coordination of care and, where needed, refer patients to medical and non-medical specialist care providers. In children, paediatricians often take this role. Pathways of care obviously vary in other countries with different healthcare systems. In the USA the recent Affordable Care Act recognized and banned discrimination in provision of healthcare on the basis of medical history or genetic information. Many countries with a nationally organized healthcare system state that they pay special attention to people with all forms of disabilities, but it is not clear whether or how the provision of care is audited.7 Hopefully, the problems identified in the CIPOLD report are purely an English phenomenon and people with learning disability or those caring for them elsewhere do not need to be concerned, but it would be reassuring to confirm this in other countries. In the meantime, in England at least the best way to help people with learning disability does not appear to be through further research into medical problems, but through ensuring the delivery of what are already recognized to be good models of care.
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Nov 1, 2024
Niall M Corcoran + 8
Open Access