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.

We’re a reasonable bunch in the Justice shed. [Yes, really]. And we pride ourselves on remaining reflective about and engaged with the constant shite we’ve experienced over the past 2.5 years. We’ve absorbed the slurs, the smears, the deceit, the obstructions, the bullying and the wilful refusal by anyone involved to take responsibility for (or even care about) LB’s death and the hundreds of other deaths that happened under Sloven’s watch.

The extent of Sloven failings get worse on a weekly basis. We’ve now seen first hand the utter incompetence of the CEO and Board. A spectacle that continues to make me feel queasy when I think about it. We know that NHS England, the CQC, Monitor, the Department of Health, Oxfordshire County Council and Clinical Commissioning Group lack the guts (individually and as organisations) or interest to do anything substantive. There is no Monitor Improvement Director. We know Mencrap is about as far removed being the ‘voice of learning disability’ as is humanly possible.

We can remember the numerous organisations that rushed to sign up to the… er… [scratches head] Winterbourne Con… Winterbourne Con? Con something. And can only guess at the money the Dept of Health flushed away on this ill thought out and useless endeavour. Followed by other incarnations. And croissants. A resounding fail. Leaving countless people suffering. And dying.

The ‘official’ response to publication of the Mazars review revealed everything we need to know. Certain people simply don’t count. Deaths schmeaths. Transforming care plans in tatters and more news emerging this week of re-institutionalisation by the back door.

So. To stop all this tedious and repetitive talk, wasted resources, increasing breakfast waistlines and empty dialogue with grassroot movements, here’s the first draft of an agreement for Trusts, CCGs, local authorities and the various regulatory organisations, Dept of Health to sign. [Lifted from a cleaning contract template..]

This agreement is made between _________________, [NHS Trust, CCG, local authority, Monitor, CQC, NHS England, Department of health… (hereafter known collectively as the Public Sector) and __________ (hereafter known as the public).

The Public Sector agrees to the following:

1. An acceptance that learning disabled people will die early and their deaths do not warrant investigation unless the circumstances are extraordinary. [There are currently no examples of extraordinary. Please contact the Public Sector for updates on Never Ever Ever Events.]

2. An acceptance that learning disabled people shall continue to be ‘placed’ in ‘living arrangements’ typically at the whim of local authorities/commissioning groups.

3.  An acceptance and agreement that these living arrangements should be dictated by budget and efficiency. [The bigger the better the guiding principle here.]

4.The Public Sector shall herewith stop pretending to support and ‘care’ about learning disabled adults.

5. Services to be performed by the Public Sector are to be lowest quality at lowest cost possible. These will typically not include any of the following: going out, encouraging community participation, fun, ambition, delight, encouraging and supporting employment, relationships or a proper home, engagement with families, effective healthcare or investigation in the instance of premature death.

The Public agrees to the following:

6. Sucking up their unrealistic expectations and stop banging on about inadequate, unsafe and poorly funded non care.

7. Either party may terminate this agreement with written notice to the other party.

In witness to their agreement to these terms, the Public Sector and Public affix their signatures below:

_____________________________________

Public Sector signature, date

_________________________________

Public Signature, date

 

Any additions or amendments to the above welcome. Would be good to get this sorted in time for our meeting with Jeremy Hunt on 3 Feb. He could be the first signatory.

I keep meaning to write something about the money Sloven spent on legal representation to defend their reputation during LB’s inquest. My Life My Choice received this information from the Sloven Board Chair earlier this week. £300,000 apparently. £300,000. And we are to blame. Yep.

But as always a new bit of Sloven crap is always around the corner. Tonight this included a reply to my painstakingly written letter (emphasis on the pain) to the Council of Governors (which is chaired by the Board Chair) from the Board Chair. [I know]. Here it is, with my thoughts in bold.

Dear Dr Ryan and Mr Huggins

Thank you for providing me with a copy of your letter to the Council of Governors of Southern Health NHS Foundation Trust. Firstly can I take this opportunity on behalf of the Board, Council of Governors and the Trust as a whole to unreservedly apologise for the actions that caused the death of your son, Connor, and the hurt that you have been put through since that time.

It’s worth returning to Ally Roger’s superb undergrad dissertation here. Ally talks about passive sentences which are constructed to show no one is responsible. She says such manipulations of participant responsibility may or may not be deliberate. ‘The actions’ and ‘the hurt that you have been put through’ used here suggest that the Board Chair ain’t really taking ownership of the flourishing apology he offers. 

Connor’s death was preventable and this is accepted by the Trust and we are truly sorry that he died.

I’m dunno why we keep hearing this ‘accepted by the Trust’ line. A more heartfelt ‘We know LB’s death was preventable and happened because we failed to look after him properly. We take full responsibility for his death’ is more appropriate. Where does ‘accept’ come from? It’s so grudging, particularly when it was bleedingly obvious from the second it happened that LB should never have died [Howl]. Such peculiar and upsetting phrasing. I don’t doubt the truly sorry bit here which is owned of course. They must rue the day really given everything that’s unfolded.

In your letter you refer to the Mazars ‘review of deaths of people with a Learning Disability or Mental Health problem in contact with Southern Health NHS Foundation Trust’ recently published.

So the only point picked up by the Board Chair in his response to my lengthy and detailed letter is the Mazars review. Wow. All the other stuff, like the upset and distress caused to our kids by the actions of staff during the inquest (and the content raised during that two weeks) just dismissed.  The focus, as ever, on the reputation stuff. 

It is worth putting on record that the Trust accepts the recommendations contained within the report. We fully accept that the quality of processes for investigating and reporting a patient death required improvement.

The hole digging just gets deeper and deeper. Putting on record? Eh? The Mazars review clearly details the extent of failings. The pre-publication challenges were dismissed. Sloven cocked up. No one (well outside of Monitor/CQC/Dept of Health) is asking if Sloven ‘accept’ the findings. This repeated positioning can only demonstrate how deeply dysfunctional the organisation of the ‘NHS’ is. 

As the report observes there is a lack of clarity across the health and social care system regarding which agency should investigate deaths of patients in the community where they are being seen by a number of different health and social care organisations and we are keen to see clearer protocols put in place.

And bam. Straight back into their already familiar refrain; ‘We ain’t the only ones who allow people to die early and cover up their deaths…’ A truly rancid position. Underlining how this bunch learn nothing. How anyone responsible for such scandalous failings can turn round and say ‘Well, other trusts are just as bad’ makes me weep. For so many reasons. 

Such a morally, ethically and professionally impoverished argument. And for this, if nothing else, the Board and CEO should stand down. 

[One question I think about is what can Sloven/OCC do now?  Have we, as a family/campaign, been kicked into a space where nothing they say or do will wash? And if, yes, what does that mean? Typically, from what I can see, families are sooner or later presented as irrational and unworthy of engagement. Shoulder shrugging professionals demonstrate mild bafflement, back away and appeal to establishment cronies for pity/solidarity about being in a deadlock situation with such ‘problem’ people.

This week I was choked to receive a thoughtful response from a Sloven Governor. My response was to immediately flag it up on these pages and welcome it. [Sadly, she turned out to be one of two governors who beetled out of the meeting on Tuesday straight after recording was agreed… but I’m just about holding onto the genuine sentiment expressed in her email.] I spoke to another governor after the meeting. He seemed to get it. He was human, didn’t talk shite and we’ll probably meet him before their next meeting.

The point I’m trying to make here is that families don’t want to battle. And they don’t tend to choose to battle. They are forced to. The rage comes from the need to battle and what this need says about their relative who has been harmed. This rage is deepened too often, by careless, fake, ill informed, offensive and meaningless responses…]

We are working on a range of improvements to the way that our Trust reports and investigates deaths and these are being discussed with the Trust’s key regulators and commissioners. Although much of the work has started the Board will be formally approving this plan at the extraordinary meeting on Monday 11th January.

Yep. Of course. White noise. What relevance is this to the issues I raised in my letter? This again is purely reputational repair shite. 

The report identified and the Trust acknowledges that engagement with families and carers has not been to a good enough standard and this is an area that will be receiving particular attention going forward. I and the Board have a genuine desire to ensure that this Trust continually improves.

The Mazars report isn’t the first time non engagement with families has been identified in Sloven dealings. Here is an example from two years ago. I can remember when Rich Watts wrote this post. Before any sniff of the Mazars review existed. In response to the publication of Verita 1. When we naively (so blooming naively) thought that learning from LB’s death would shake up Sloven’s learning disability provision. To make out this is a newly identified issue is deeply offensive. Typical though of the Sloven way which is all about erasure. They try to erase every example of wrong doing by rigidly fixing on the future. It’s a form of bullying really. Dressed up as a ‘learning journey’.

I would be more than happy to meet with you and others to discuss what other improvements could be made so that we can ensure that lessons are properly learnt from Connor’s death and your experience of Southern Health NHS Foundation Trust.

The meeting ship has well and truly sailed, Mr Board Chair. In typical Sloven shitilla fashion. You have missed and/or stamped on every opportunity to do anything differently since LB’s death. And this non letter is further evidence of this. 

Step down. Move on. And allow genuine leadership to take over. [And please don’t attempt to fawn over us at the meeting on Monday.]

Yours sincerely