The Confidential Inquiry into premature deaths of people with learning disabilities has just reported its findings. Extrapolated, they indicate 1,839 excess deaths per year of intellectually disabled people aged 4 and up, in England and Wales. Here are my workings: extrapolation of CIPOLD data using 2011 census data as a basis for the population extrapolation. I also calculate premature deaths of 14 in Manchester, 78 in Greater Manchester and 205 in the North West every year. Now these figures are extrapolations from five authorities in the South West, so shouldn’t be taken as fact – but they do indicate the likely size of the problem elsewhere.This is an epidemic.
It is also incredibly frustrating. When I worked in this sector we tried very hard to improve practice, increase awareness, put in safeguards. Yet annual health checks are not yet mandatory – surely a basic responsibility of any primary care service worthy of the name – and where they do take place they seem to be of very variable quality. Hospitals don’t generally have systems for flagging the vulnerability of intellectually disabled people. And levels of understanding in general healthcare remain abysmally low. In a number of practical studies we found that there were problems in accessing mainstream health services and in identifying treatable conditions. Physical health problems were too often discarded as being part of the disability. Basic errors were still being made as of a year ago when I retired (for example giving people with serious swallowing problems foodstuffs that compromised their airways), and given the strains on our health services I doubt if things are any better now.
There are some areas where practice is better. Central Manchester Hospitals worked very hard with us to improve levels of understanding and awareness, and to ensure that the knowledge of carers and of learning disability specialist staff was used in care plans. They also established (with several partners) an excellent programme of work-based training, leading to real jobs, and importantly increasing the presence of intellectually disabled people in positive roles around the hospital. But the challenge remains – the same puzzle I tried to solve throughout my career – to make best practice routine. Why should this be so difficult?
Meanwhile people continue to die needlessly.
Someone once said that a society can be judged on how it treats its weakest members. Enough said.