The inquest into the death of Richard Handley (right), who died of faecal impaction in Ipswich in November 2017, is ongoing and is being live-tweeted on the account @HandleyInquest, which I recommend everyone who is interested in the issues surrounding the care and treatment people with learning disabilities get in this country should follow. Richard Handley had Down’s syndrome and Hirchsprung’s syndrome, a disorder of the gut in which part of the bowel lacks motor nerves and has a tendency to narrow, trapping faeces above the point. His condition had been managed both when he lived with his family and later after he was admitted to a respite home and then a care home, but after that was converted (for cost reasons) to a “supported living facility”, the support stopped, the staff stopped managing his condition and his family were not able to. It’s too long a story to retell here so I recommend you read the above entry.
The author mentions a few lessons that might be learned from this towards the end. Here is another: I’ve been following some families whose children (teenagers or young adults who are autistic and/or have learning disabilities) have been admitted into the mental health system and held for long periods in an apparent attempt to channel them away from their families and into care homes and supported living. Often this was done on the pretext of an ‘assessment period’ of a few weeks but this has continued into years; the case of Tianze Ni, originally from Scotland but who has been in hospital units in the north of England for about three years now. Often people with learning disabilities have epilepsy and often they have gastro-intestinal issues; Dimensions UK estimates that one in three of the people they support are at risk of constipation (other estimates put the figure at about half) and 98% of them use laxatives. Families may have been dealing with these issues all their lives and know how to, for example, get their relative to go to the loo, as was the case with Richard Handley. Institutional staff may not, or may be incompetent, with potentially fatal consequences.
Often families want their relatives living at home with them, with professional support, but they are being obstructed in this by professionals with hard-set ideas and families do not have the means to robustly challenge them. Some care homes are good and some bespoke housing arrangements can work well (as we have seen with Josh Wills, who was resettled from a hospital unit in Birmingham to a house with a bespoke care package in Cornwall, near his family), but in other cases, as with one family that I am in contact with in Gloucestershire (of someone whose case was part of one of the “Seven Days of Action” events), the staff prove incompetent and the arrangement breaks down — in that case, the young man’s mother wanted him home, not in “a home”. Given that families have years of knowledge of their conditions and newly-hired care workers don’t, these professionals strong-arming autistic people (as they usually are) into “homes” or other living arrangements of their devising are putting their lives as well as their long-term quality of life in danger, and this ought to stop.
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- Transforming care? More like history repeating itself
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- Review: Dispatches, “Inside the Priory”
- Home-schooling: the Muslim and autistic perspectives