Quality, not quantity

Picture of Nico Reed, a young white man with very short hair wearing a striped T-shirt, in a wheelchair with a leather harness, smiling.On Thursday the inquest into the death of Nico Reed, who died in a Southern Health supported living unit in Chalgrove, Oxfordshire, returned a narrative verdict which stated that his death was the result of “aspiration of gastric contents” with an “underlying cause of cerebral palsy”. He found that Nico could have been saved if he had been checked every 20 minutes, as stated in the care plan, but that this was intended as a guideline and could only be a guideline as there was only one members of staff at night to look after four severely disabled residents. Yesterday BBC Radio Oxford covered the inquest result, which I was able to hear as my work took me to Reading and Newbury which are well within range, and I caught a phone-call from another parent with a son or daughter in the same unit, who called up to defend the unit and the Trust, saying among other things that checking him every 20 minutes would have been intrusive. He also attacked the “nasty blog campaign” against the trust (you can add this blog to that description, but he mainly meant people like Nico’s mother Rosi Reed, Sara Ryan (whose son Connor Sparrowhawk also died in Southern Health’s ‘care’), George Julian, Gail Hanrahan, Mark Neary, Justice for LB, People First England and a few others), at which point the host, Phil Gayle (who has covered the Southern Health care scandals in depth) cut him short. (You can listen to it online here for the next four weeks; it starts at 2hrs 7min. You can also read Sara Ryan’s write-up of the Southern Health rep’s performance.)

The story of how Nico came to be in that home and what happened to him there is told in more detail in this blog article from last June (again, from one of the ‘nasties’ or the ‘harpies’ as that parent previously dubbed the mostly female group of bloggers; see also here). He had been in a boarding school up to age 18, but when he reached school-leaving age, there had been no suitable adult provision, and his parents were told that unless they accepted what they perceived to be an inadequate local home, he could be transferred to a ‘place of safety’ which could be anywhere in the country, “and once there it would be almost impossible to get him out”. When he was moved to Barrantynes, the quality of his care deteriorated; at his school, the staff had developed ways for him to communicate, but these were not followed at Barrantynes and he lost the ability to use them as a result. They also neglected his physiotherapy which he needed to keep his breathing and swallowing muscles working properly; as a result, he developed muscle spasms and a tendency to choke on his saliva.

The conclusion is that if more attention had been paid to Nico’s quality of life while he was alive, and especially in the period after the transfer from Penshurst school, the circumstances that led to his death might not have happened. Although Nico had been diagnosed with a learning disability, Nico’s mother has written (long after his death) that she believed he did not have one, and challenging behaviour was also not an issue. Was his apparent ‘learning disability’ purely the result of a lack of ability to communicate with him? (There is another example here of a person who lacked any ability to demonstrate that she had intelligence or understanding, but when it came to the crunch, did so.) Although the Trust described him as a popular resident at the unit, his mother said he had become “thin, depressed and frightened” and his family were looking at ways of adapting their home so they could look after him there, but he died while this was being looked into.

The blog campaign I am part of is not about crucifying NHS trust staff for the sake of it. It is about making sure people with learning disabilities and severe physical disabilities that may manifest as such, have a quality of life such that they are not miserable or frightened: that they are not unduly separated from family, that they are not held in cells for years on end like an animal, that their physical needs are taken care of, that their families are not excluded from decisions about their care unless it is absolutely necessary, that they cannot be subject to unjustified mental health-oriented treatment, that decisions cannot be made about them without them, or if that is unavoidable, without their families or close friends, for the convenience of carers or clinicians or to save money, and that services do not drop off a cliff when someone turns 18. If we can ensure this then we might avoid future discussions as to whether someone could have been saved from choking on their own vomit if they had been checked on every 20 minutes as they slept, because that’s a pretty miserable way of being kept alive.

(Also, Lucy Series has an exploration of the legal issues, in particular the fact that article 2 of the European Convention on Human Rights — the Right to Life — was contravened in this case according to the coroner.)

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