I’ve been weaving my way around NHS/social care spaces online where minutes of meetings are tucked away. Safe from view if you don’t know to look for them*. I’ve read the Trust Board Meeting minutes and more Clinical Commissioning Group papers (which I was alerted to a while back because of poor service concerns in the unit since 2011). I drew a blank at uncovering the Adult Safeguarding Board minutes but given their website is fairly archaic, they may still be typing them in duplicate.

It was a fairly informative (depressing) activity.

Back in July, the Trust Board made reference to LB’s death;

A Serious Incident Requiring Investigation (SIRI) occurred in one of the Trust’s Learning Disability in-patient facilities, leading to the unexpected death of a service user. The postmortem indicates the user died of natural causes and early investigations indicate all appropriate systems and processes were in place and being followed leading up to the incident, however a full investigation is underway, in line with the Trust’s agreed policy.

I don’t think they should have drawn these conclusions from what was known at that time really. In a public document. Why make such a jump?

I also don’t think, given these are publicly available documents, they should be so fucking clinical. (On a pedantic note, a SIRI didn’t lead to LB’s death, but hey ho). He was a young man, a young person, even a patient. Someone with his whole life ahead of him. Not a ‘user who died’… What sort of people sit in these meetings?  How would they feel if it was their son, their brother, dad, grandad being dismissed so carelessly? If these documents are publicly available, you really (surely?) have to think about how you discuss/minute things sensitively?

These documents (Trust, CCG, and I’m sure social care if I could find em) are pretty remarkable/astonishing. Consistently diluting, denying, defending, protecting, spinning, reducing and embellishing. With so much jargon I wonder if they use an app to generate large sections on a rotational basis.

But back to the unfolding ‘story in minutes’. By October, the Trust was clearly forced to shift a bit on the whole ‘natural causes’/’everything was done properly’ position. Although spin and dilution continued. Things had got a bit more serious for them. LB became a ‘patient’ and there was a fairly pat, ‘everything is as it should be, following appropriate systems’ type statement about the internal investigation. This included the statement; the patient’s mother is engaged in the process and is identifying an advocacy group for us to work with.

For the record (to redress partial story syndrome), we were on the verge of withdrawing our engagement with the process seconds before the investigation was handed over to an external investigator. We’d been messed around by the Trust to a point that we could no longer realistically engage with them. The nonsense, contradictory, bizarre actions around our advocate (Fran) were unbearable and the attitude of the Trust towards us appalling.

Fran was put in a completely impossible and unworkable position. She received phone messages ordering her not to share the confidentiality agreement she’d been given with anyone (not even a solicitor). The Trust’s solicitor wrote to express concern about my twitter activity. They’d already flagged up they were aware of (monitoring) my social media activity (twitter, facebook and this blog) but I’d gone on to  ‘particularly disappoint’ them around this time.

The pressure and stress of dealing with these hostile, defensive and unnecessary actions was immense.

Because we weren’t sitting quietly and letting things be dictated by the Trust.

Eh, this can’t be right. What about (post) Winterbourne? Francis? Keogh? Berwick?  It’s all about duty of candour now, transparency and patient centredness (or bereaved family-centredness) silly…

Who? What? Post what? Bereaved family? Where?

We feel deeply angered by the way in which the (completely avoidable) death of our beautiful dude has been handled, both in interactions with the Trust and in these online (semi-hidden) records.

The worst happening imaginable has been made so, so much worse.

Classy.

*Google ‘the Trust name/local authority or Clinical Commissioning Group’ and ‘minutes’,’papers’ and/or ‘meetings’