Abstract
The Confidential Inquiry into premature deaths of people with learning disabilities 1 reported the median age at death for the 247 people with intellectual disabilities (ID) in the study to be on average 16 years sooner than in the general population of England and Wales. Almost one-quarter (22%) were under the age of 50 years when they died, compared with just 9% in the general population. A comparator group of people without ID, who died at a similar age and from similar causes, experienced significantly fewer problems in all aspects of care provision, coordination, and documentation. One of the contributory factors highlighted in the report was the delay in the care pathways of people with ID who had died, in particular delayed diagnosis. Of the 171 people with ID who had been identified as being unwell, by themselves or their carers, and who had responded promptly in reporting this to a doctor, almost one-quarter (23%) had one or more problems with their illness being diagnosed. The problems of diagnosing illness in people with ID are well-rehearsed. Patient-related barriers include that people with ID may not identify symptoms promptly or communicate them articulately; they may be reliant on support to access services, present with illness in unusual ways, and have an atypical response to treatments. Clinician-related barriers relate to a lack of knowledge about the health issues of people with ID and a lack of skill in adopting appropriate approaches when assessing, diagnosing, treating, and monitoring illness in this patient group.2 The Confidential Inquiry additionally identified a number of issues contributing to delays in diagnosing …
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