Where to start? How to make any sense of what’s happened this past week? I don’t know really.
Kicking off with the worst
news experience happening imaginable, we’ve been knocked into a space that most (a lot of?) people/kids/families tend not to enter. LB, who was loved so deeply, experienced a consistently careless disregard of his life by others and ended up dying, aged 18. A complete and comprehensive health and social care fail. I don’t care what crapshite defence/excuses are presented in the destructive and damaging processes we have yet to face. It should not have happened.
The shite continues of course. As well as having to think about LB, his siblings, the funeral arrangements, ongoing CID investigations and an NHS internal investigation (don’t laugh), we’ve been forced to read guidelines around post-mortems involving epilepsy, chase up missed procedures and appoint a solicitor. Unimaginable horror. Confronting the gap between guidelines and practice. Phone conversations about missing brain tissue samples while journalists hover on the doorstep or lurk online.
Welcome to the world of death by indifference.
There is such a chasm between the raw, devastating grief visibly experienced by family, and those close to LB, and the careless, callousness of many ‘professionals’ we’ve come into contact with over the past few months/years. Family was really a dirty word once LB entered the unit in March. We had to ring up and ask his permission to visit him on a daily basis for over a 100 days. He never once said no. This is so heartbreaking, I want to get the relevant people by the scruff of the neck and say “What were you doing? Why would/how could you you do this?” LB lived happily with us for 18 years before ending up in state care because there was no other care. “What were you trying to achieve by carelessly labelling us as the problem?”
I want to know how the system, and the people operating within it, allowed and supported LB’s death. And our heartbreak.
I know he isn’t alone in experiencing such indifference. There is so much evidence about the mistreatment of learning disabled people by health and social care it’s appalling. (A mistreatment supported by the non-action of the government*). But right now, he is. For us.
*And don’t get me started on the cheap, nonsensical and patronising notion that “giving greater voice” to learning disabled people will, in any way, shape or form, reduce these horrific statistics.