Struggled a bit with the thought/context/rational for meeting Jeremy Hunt today, especially after reading Imogen Tyler’s powerful JusticeforLB post this week. The administrative grotesque. Highlighting how rituals like meetings and emails may expose the ridicule of people in power but perversely strengthen the legitimacy of the power holder. Shudder.

Disquiet in the Justice shed.

To meet or not to meet? How many meetings have we attended? What has actually happened? Other than ticking the ‘met the bereaved family/campaigners’ box. Reinforcing the the power of the meeting host while sucking the life out of #JusticeforLB?

Why have none of these NHS/social care meetings happened in spaces convenient to us?  Or other families in similar situations? The administrative grotesque could be subverted by the powerful travelling to meet those who experience state atrocities. The brief meeting with the Leader of Oxfordshire County Council. And the impossibly briefer meeting with Monitor would have been a different experience without the six hour journey/cost involved. But nah. Meetings are firmly on the terms of those who wield the power. You make the time and stump up the emotional and financial cost to attend these or you don’t/can’t.

Expectations today were set firmly at low to ground level with that blooming hope light, the light that (remarkably and probably stupidly) hasn’t been fully extinguished, still flickering. He won’t… but he could.. but he won’t… but he could… flutterings of naivety.

Deb Coles, Rich and I met for a pre-pre meeting at the National Gallery café and thrashed out what we hoped to get from the meeting. We met Andrew Smith, our MP, in Portcullis House for a pre-meeting. Formulating more of a plan. And then set off, through the backside of Portcullis House to the Department of Health (or Death if you’re learning disabled).

At this point, spirits were reasonably high. We had a bit of banter from a Dept of Health employee who cheerfully snapped us outside the building. A before pic.

I’ll unorder the story at this point and leap ahead to the debrief after the meeting. Deb and Andrew (who were both superbly supportive and good company throughout the afternoon) offered the following reflections and cheeriness.

• It’s brilliant to get a meeting with the Secretary of State.
• He clearly listened carefully and was affected by what was said.
• He took away from the meeting three action points which are steps in the right direction.
• Change takes time.
• He was genuinely sorry about what had happened and the treatment we’ve experienced since LB’s death

The meeting started 15 minutes late with the announcement it would need to finish in 30 minutes because of a voting commitment. Two pre-meetings worth of stuff to cover immediately compromised. Eek. Just how administratively grotesque would this be?

We started. Vaguely focusing on the five points Andrew outlined at the beginning. Pretty soon I felt despair at the futility of the discussion. Sitting in a comfy cream armchair in an office that is the stuff of dreams, with a couple of people doing something silently behind us, Jeremy Hunt listening carefully. When Rich summarised our experience of Sloven shite across 2.5 years I wondered how these words could possibly be spoken without some immediate action; criminal, regulatory, resignatory or otherwise. The brutality of the experience remains extraordinary in the lived experience of it but also the non response to it.

A few hours later, sitting on a train to Cardiff with a lukewarm plastic glass of wine, I’m beginning to make better sense of it. Here’s my half formed thoughts:

JH was firmly in a space of making some innovative and committed changes/approaches to improving patient safety and changing NHS culture around safety. A bit too heavily focused (uncritically) on learning from the aviation industry for my liking but clearly passionate about improvement. The trouble was he subsumed the issues thrown up by the Mazars review into these more generic changes to NHS culture.

We were arguing that the lives and deaths of learning disabled people (and people within mental health settings) in the NHS demanded increased scrutiny particularly given the Mazars findings. If a group of people are consistently dying prematurely some sort of national mortality review board/ independent investigation mechanism is essential (unless we all agree that shit just happens… to, erm, particular people).

The meeting was brief and pretty forthright. The action points JH decided on involved some revisiting to check originally actioned points arising from the Mazars review were as robust as they could be, looking closer at the actions of the Sloven senior team and making sure the CQC inspection regime takes a more holistic view of people’s lives and aspirations.

Was it a good meeting? No comment.