[Written on 16.7.15]
Two years ago today we buried LB. On a baking hot July day.
He went from being a funny and beyond loved dude to an anonymous inmate in an ATU in the blink of an eye really. Pretty much stripped of his family, everything he understood and recognised, and then his life.
12 days after being found ‘unconscious’ in the bath in the ‘specialist unit’ (that had been taken over by Southern Health NHS Foundation Trust some months earlier), he was buried in a Routemaster bus coffin in a woodland grave. Aged 18 and a half.
I find it hard to think back to that time. Those spaces. The 12 days… The 107 days before. The two years since. Spaces of indescribable pain and horror.
I still remember LB though. Outside of all the shite. I realised this yesterday when I imagined him on holiday with us. I could still see him, hear him and feel his presence strongly. His (constant) commentary, facial expressions, enjoyment, participation and humour. I could see him, sitting cross-legged on the beach, sifting sand through one hand, eyes half closed, basking in the sun like a contented cat.
I wondered about this. On a windswept beach in Tenerife. One of my (many) fears was that I’d forget. That he’d lose shape, substance, being in time. His brutal and unexpected death would obliterate him. But it hasn’t.
After listening to Scott Morrish describe his experiences of what happened after his young son, Sam, died a preventable death in hospital (a depressingly, depressingly familiar account), I thought it might be useful to try to capture and summarise the process. What actually happens:
- Your child dies. Unexpectedly. Horrifically. Sometimes brutally.
- You are traumatised. Pitched into an unimaginable space of deeply intense pain, shock, horror, disbelief and agony.
- Your body expels anything it can physically; vomit, tears, shit, noise.
- And, from this point, for a potentially infinite period, you live a life that is, at best grey.
- The Trust responsible for the ‘care’ of your child will speedily present a ‘Shame but nothing to see here’ type line.
- There may or may not be talk of an investigation or ‘root cause analysis’.
- You will probably start to ask more focused questions.
- The response to such questioning can be anything (or shift) from faux assurance that everything possible is being done to get find out what happened, to hostility or simply silence.
- The process seems to be continually delayed by the actions of the Trust. They fail to disclose documents or complete versions of documents. You become more concerned and continue to question.
- A narrative soon surfaces. You’re the problem. You, with your persistent questioning, your inability to ‘move on’. Your unreasonable actions are causing problems for others, including the staff involved.
- There may be attempts to smear/discredit you through nuanced reframing or positioning of events or explicit blaming.
- If the investigation finds that your child’s death was preventable the Trust may apologise (probably publicly if the report is made public). The superficiality of this apology may become apparent when the Trust pitches up to the inquest with barristers and coached staff in an attempt to refute any real responsibility.
- The NHS, that cuddly British institution that you’ve grown up with warm fuzzy feelings and respect for, is not your friend when something goes catastrophically wrong.
Wow. Just bleakly bleak. With a load of bleak on top. Despite detailed NHS policy spelling out what to do. At the Clinical Human Factors Group conference that Scott was speaking at, one man told us about his experience after his wife died. The Trust were completely open, took responsibility for what happened and worked with him in investigating her death thoroughly and transparently. He emailed me after and said “I know that my journey was made easier by the commitment and personal philosophy of some staff in the hospital trust.”
So it can be done.
The big question is why does it tend not too?
[Three years on and no answers…]