LB, uncounted

Why doesn’t the UK properly count and record the lives, and – yes – the deaths, of people with learning disabilities?

byAlex Cobham421 Views
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  1. Working in development, it can sometimes be easy to take things about the UK for granted. When we included UK and Canadian case studies in Save the Children’s Born Equal report on child inequality (along those on – Brazil, China, Ghana, India, Indonesia and Nigeria), there was a certain amount of pushback along the lines of “you can’t suggest the inequalities are equivalent”. [Just for the record: you can; we did; and they are.]  

    I started a blog when I was at Save call Uncounted, dedicated to looking at those who go uncounted because of power – either an excess of power (those who hold with impunity, and uncounted, the trillions of dollars of tax-evading assets globally, for example); or its absence. People from marginalised ethnolinguistic groups, and/or on the wrong end of other inequalities including gender, sexuality, age, regional and urban/rural, often suffer a double marginalisation: they are systematically more likely to be uncounted in national surveys or other statistics. Because such data is often used as the basis for policy decisions, including funding allocation and other prioritisation, going uncounted will often mean people simply don’t count.

    One of the most powerful failures to count in the UK relates to persons with learning disabilities. [There's an entire other question over categorisations in terms of disabilities, and what 'learning disabilities' even means; not getting into that here. It doesn't detract from the need to recognise difference and risk, and to respond where appropriate.] Earlier this year, the government's confidential inquiry into the premature deaths of people with a learning disability released its report. There were two headline statistical findings: 

    * 37% of deaths would have been potentially avoidable if good quality healthcare had been provided

    On average, men with a learning disability died 13 years earlier and women with a learning disability died 20 years earlier than the general population. 

    The most powerful recommendation of the inquiry is, to quote Mencap, "for the establishment and funding of a National Learning Disability Mortality Review Body in England. This would allow for the continued collection of mortality data for people with a learning disability. The role of the body would include... a uniform death reporting system: at present, there is no uniform system for recording that a person who had died had a learning disability. To fix this, a comprehensive register of people with a learning disability would need to be established, potentially linking educational and health registers. Mortality data would also need to be linked to the records of people with a learning disability and a uniform system of reporting the deaths of people with a learning disability would need to be established." 

    The government has refused to create such a body, and so learning disability mortality continues to go uncounted. A bit expensive, apparently. 

    In July, our good neighbour @sarasiobhan's son LB died. In a bath. In a hospital.

    Today, the Care Quality Commission released its report from a September inspection of the unit where LB died. The unit failed - on every single area of assessment. 

    Below are some of the tweets, mostly from @sarasiobhan although there were literally hundreds of others, responding to this report - starting last night when it was still under embargo. There is swearing.

    If you feel moved to anger or anything else by this - and why wouldn't you? - there are a number of ways that you can move to encourage the government to accept the key recommendation of their own inquiry. There's also something more immediate - you can support LB's fighting fund, so that the organisations involved in his unnecessary death are held to account, and at least this one death does not risk going uncounted.