We’ve been racking up some toe curling and often parasitic meetings since LB died. Pretty much all involve travel (at our expense), time (unfunded) and no apparent change or tangible outcome. Two immediate lowlights stand out. The Monitor six minute jobby of course. And a shindig with other families at the House of Commons organised by Mencrap and the Challenging Behaviour Foundation. Our role; looking sad and waving A4 laminated photos of our kids (produced without discussion or permission) to order at the All Parliamentary Party Group on Learning Disability. Rich walked out. I didn’t. Shudder.

A ‘relatives day’ was organised by the Independent Patient Safety Investigation Service (IPSIS) Expert Advisory Panel (EAG) last November. IPSIS is another meaningless [not sure what to call it really] venture? Endeavour? Nah, too generous… Job creation/sustaining scheme?  Dunno. Thing. It was announced last July as part of the gov response to various reports into safety in the NHS.

Like the Winterbourne Joint Improvement Programme (JIP), IPSIS does nothing like it says on the tin. The Winterbourne JIP generated no improvement. IPSIS ain’t independent. It’s based in the Dept of Health and the Expert Advisory Group Chair is Mike Durkin, National Director of Patient Safety, NHS England. Hilarious really. Although it ain’t because there is a very clear need for independent scrutiny of deaths in NHS trusts.

Anyway, the IPSIS EAG [sorry] has met about 10 times so far in six months probably at enormous public expense. Meetings are held in London at the Royal Society. From what I can glean from meeting minutes it’s come up with a name change (something instantly forgettable), a promised final report and the decision to appoint a Chief Investigator by the launch of the service in April 2016.

I know I’m becoming sourer than a lemon sherbert but I suspect the final report and new Chief Investigator post were decided before the IPSIS EAG was convened. So this bunch have come up with a name change. And been battered by random decisions imposed from above. (Independent) investigations will apparently be limited to 30 cases a year (?) and will (apparently) focus on maternity related deaths in the first year (?) There will be a focus on learning, not ‘blame’ and disclosure of findings to families is to be determined on a case by case basis.

There is something I find pretty uncomfortable in all this IPSIS stuff which is deeply influenced by learning from the aviation industry (a human factors approach). Jeremy Hunt gave us a human factors speech when we met him and it always comes across a bit too evangelical and cult like to me. And it involves secrecy and prioritising staff wellbeing over families who want answers and accountability.

[New paragraph]

To be fair to the IPSIS Expert Advisory Group they have clearly been concerned about independence, although to little effect. This extract is from the December minutes:

A statement of hope. Christ. Trusting the NHS?  What a load of bollocks.

The ‘relatives day’, in November, was a variation of the laminated House of Commons photo waving gig. Bereaved families were asked to be filmed for the Department of Health to use in promotional materials for the launch of the (branch) service this spring. We’ve heard some families agreed to filming and then withdrew their permission after it became clear the whole day was a PR stunt. Just dire.

What really stinks about all of this is that families engage with these meetings because we want change. For what happened to our relatives not to happen to anyone else. Instead, we are engaged with (momentarily), at a time and place dictated by the NHS, or related organisation/charity, offered a fake whiff of change, have a bit more life sucked out of us and then spat out until the next time.

The IPSIS (Branch) EAG might just as well spend the expenses allocated for their final meeting/s in the nearest bookies they can find to the Royal Society [Betfred on Gerrard Street].

Or withdraw from the whole fake process.

But they won’t.