In 2013, The Confidential Inquiry into the deaths of people with learning disabilities (CIPOLD) was tasked with investigating the avoidable or premature deaths of people with learning disabilities through a series of retrospective reviews of deaths.
The aim was to review the patterns of care that people received in the period leading up to their deaths, to illustrate evidence of good practice and to provide improved evidence on avoiding premature death.
For 29% of deaths examined in the enquiry there was significant difficulty or delay in diagnosis, further investigation or specialist referral and for 30% there were problems with their treatment.
The lack of reasonable adjustments to facilitate healthcare of people with learning disabilities, particularly attendance at clinic appointments and investigations, was a contributory factor in a number of deaths.
GP referrals commonly did not mention learning disabilities and hospital ‘flagging’ systems to identify people with learning disabilities who needed reasonable adjustments were limited.
People with learning disabilities had a considerable burden of ill-health at the time of their death.
Key issues that appeared to be problematic were the lack of coordination of care across and between the different disease pathways and service providers and the episodic nature of care provision.