I don’t think there can be many worse experiences than having your son (with epilepsy) drown in the bath in a secure NHS setting.
But then, instead of being able to grieve ‘in peace’ (not that I can ever imagine feeling peace again), we have to deal with the monster that is the NHS and the procedures that kick into action when something like this happens. And this is fucking hideous.
This state run organisation, supposedly built on the premise of care, is able to investigate its own cock-ups and, at the same time, grind bereft, shattered and exhausted families to bits. How can this be? I’d heard terrible, terrible stories from other parents but thought timing wise, given all the recent talk of change and reports into the way the NHS is run, there would be some improvement in the way in which it deals with unexpected deaths.
Well you can chuck all the post-Francis, post-Keogh, post-Berwick talk in the bin. Post-my arse. So many cliches spring to mind thinking about these reports. Wind, pissing, paper, written, teapot, chocolate.. endless. Simon Denegri nicely illustrates how the language of these reports suggest inertia rather than action. Yep, inertia, surely a central feature of a monolithic structure. Oh, and you can lob ‘post-Winterbourne’ in the bin too while you’re at it. Given LB died in a treatment and assessment hellhole. Empty, meaningless statements of change. Almost embarrassing really.
We (stupidly – well more me than Rich to be honest) thought that we were being listened to. That our concerns and our lack of confidence in an internal [yes, really, internal] review were taken seriously. Our CID guy even forwarded the link to my ‘letter to the internal reviewer’ to the person leading the review. Love him. The acronyms disappeared, LB was called by his name. And the Trust introduced some innovative levels to the review. Innovation Simon, not inertia. Some comfort. Movement in the right direction.
And then, yesterday, an about turn. Innovation suddenly reduced to a shell. A complete sham. It was a rug, feet situation. We walked round for the rest of the day reeling and raging. Truly battered. Our son died while in the ‘care’ of this organisation. And now, this same organisation is wielding a level of power over us that is astonishing in its wrongness. Astonishing in its hypocrisy. Astonishing in its cruelty.