The other week I had another interview to do with ‘LB’s case’. He ain’t a case but he’s become ‘a case’. Nearly three years on. Not to us but to officials around us. I don’t think he even qualified as ‘a case’ for Sloven initially. He was less than human. Less than a case. Like the other 330 odd people who died in their ‘learning disability care’ between 2011-15. Tossed aside without consideration. A two bit
non human service user with a pain in the arse mother who blogged about her son’s experiences.
The interviewer at one point asked me
‘Did you tell them LB had epilepsy?’
‘Did you tell the staff in STATT LB had epilepsy?’
I eventually managed to breathe again, stop the tumbling tears and say, without swearing, that LB took daily medication for his epilepsy which we handed over to staff on his admission. Of course we fucking told them.
[I didn’t bother saying about the time we were phoned to ask if we had additional medication because they had run out, or that day in May when I told them, phoned them and emailed them to say he’d had a seizure they hadn’t recognised. Or that unknown to us, the psychiatrist went on to insist LB wasn’t having seizures…]
So. Yes. We told them… why the fuck are you asking me this?
I was embroiled in twitter exchange yesterday with Human Factor (HF) protagonists. An approach that focuses on learning not blame. I don’t know. I find the HF bunch a bit evangelical. And the whole idea that preventable deaths are ‘golden learning opportunities’ makes me feel ill. Unfortunately our ‘meeting Jezza Hunt’ experience was pretty depressing as he insisted a HF approach would lead to safety improvements across the board. Thereby improving the currently dire mortality rates for learning disabled people. No Jezza. Stop it. Just stop it. But he wouldn’t.
What is astonishing is the focus on protecting staff. Creating a safe space so staff feel they can tell the truth about what happened, about what went wrong. So that ‘golden learning’ can happen to prevent people dying in the future. Meanwhile, parents/families can be implicitly, or explicitly, blamed and crushed by the process.
Talking of which, 12 Angry Women premiered on Friday night at the Brighton Dome, packing a punch or ten. Edana Minghella, one of the writers, wrote a short piece about LB and composed a song; ‘The Mother’s Song’. Just astonishing. In a 10 minute piece, she wove together a combination of blog extracts capturing LB as a quirky, funny and much loved dude and ‘official’ commentary contrasting the brutality of what happened and what followed. It included the mermaids, Afghanistan, slavery, wanking, social media and toxic mothers.
There were three characters each of whom were performed brilliantly by Gem Bennington-Poulter (LB), Leann O’Kasi (me – bit odd saying that) and Richard Attlee (Generic Official Person). The latter was a mix of the coroner, Sloven, NHS England, the CQC, Monitor and Jezza rolled into one. You could hear a pin drop in the packed and boiling auditorium as the story unfolded. Tears. And more tears. And the song is simply beautiful.