So here’s the gig. A couple of weeks ago, the NHS Trust let us know that an advocate (family member or otherwise) would be part of the investigation panel. Up to us who. This person would fully participate in the investigation, attending meetings, interviews and contributing to the final report.

Well. That’s something, we thought. An internal investigation still made our brains implode, but at least there would be a measure of transparency. A positive development. Always particularly welcome in extreme times. We asked Fran. Fran, who has a wealth of personal experience and is a trained advocate. One of the kindest people you could ever meet. She agreed (an enormous commitment on her part, both in time and emotion).

Yesterday it was all change. The Trust’s legal team had discovered a conflict of interest. A conflict of interest? 

Hold on to your hats for a tenuous link worthy of an oscar; Fran does some voluntary charity work. The Chair of the charity used to be CEO for the Trust that used to run the unit.

I thought you might struggle with this so I’ve created a diagram (see Figure 1).

I hope this makes it clear. A conflict of interest worthy of ‘the dog ate my homework Miss’. A conflict of interest trumped up in such unspeakably awful circumstances.

So, before she’d even started, Fran was off the gig. The only person so far, in this tragically appalling tale, to lose her position. And two Trust employees (employees) sit securely on the panel.

That’s not all.

Because we’d had the gall to suggest an advocate with a conflict of interest, we’d lost our right to choose an advocate. We were to nominate an advocacy group and the Trust would select an appropriate advocate from this group.

That’s not all.

1. The new advocate was no longer allowed to sit in on staff interviews.
2. The new advocate was to sign a confidentiality agreement so we would be told nothing during the course of the investigation.

When is an advocate not an advocate? When they ain’t a fucking advocate. That’s when.

Off to cry again now.

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.