Simply not good enough

A quickie post today. Here’s our response to the Sloven Board Chair’s response to our original questions. Phew. What a plinking too and fro. (Not eased at all by speaking on the phone last week). Here’s the CEO’s original response (health warning attached to this number… not a pretty read).

Why am I weighing the blog down with such durge? Because a complete focus on self protection, disregard for grieving families and extraordinary incompetence (at best) exhibited by an NHS Foundation Trust should be a matter of public interest.

For those of you who would rather poke your eyeballs out with a sharp stick and fill your boots with raw chilli, here’s a beautiful photo of LB and classmates at school a few years ago.
LB (2)

Thanks to Graham Shaw for his contribution to this response… one of so many people pitching in because it simply ain’t good enough.

The inquest

Received the pre-inquest review meeting (Nov 25th) paperwork from the coroner’s office this morning. (Sob). Thought it would be useful to outline the process here. (This is my sloppy version. For superb information the INQUEST Handbook is your baby.)

The inquest establishes who and where, when and how they died.  An inquest is held when the cause of death is unnatural or uncertain. There are bog standard inquests and article 2 (of the European Convention of Human Rights) inquests. The latter happen when there’s a question mark over state failure to protect someone’s right to life. Article 2 inquests are more in-depth and can involve a jury. Juries are required when someone dies in state ‘custody’.

The inquest isn’t about blaming people but the coroner can issue a critical verdict. Article 2 inquests can lead to narrative verdicts which expose problems or mistakes made.  A rule 43 report is where the coroner writes to the relevant person/ authority who has power to take action to prevent further deaths. Getting a rule 43 report is a chunky old dent in the reputation of an organisation (basically flagging up their shiteness publicly) and should lead to action.

When things are complicated pre-inquest meetings are held to thrash out the scope of the inquest (type, how wide a focus on what happened, whether there will be a jury and what witnesses to call, etc).

Phew. Think that’s pretty much it. Some other snippets… The coroner makes all these decisions. Inquests are public events. LB’s inquest can’t happen until the police investigations have finished. Sloven will have a legal team present defending them at the taxpayers expense. We have to fund our own legal costs (around £25,000) which thanks to  legendary efforts by the great British (and further afield) public we’ve pretty much raised now. This is bloody brilliant. Though so wrong.

The writing on the wall

Had a day off today and had a lovely lunch with lil sis, Sam. Once she’d gone, the latest FOI pinged into my inbox. More stuff from the County Council about STATT. This includes a second (in addition to the November 2012 quality review) Quality and Safety Assurance Review of the Oxfordshire Learning Disability NHS Trust (OLDT), just before the Sloven takeover, commissioned in September 2012 by NHS South of England. Conducted by an external consultancy.

The review states that the impending acquisition, issues arising from Winterbourne View and those relating to an inpatient client led to a renewed intensity of interest and scrutiny on OLDT by the Strategic Health Authority. It discovered an insular organisation, with high levels of restraint, a culture in which a casualness ‘about strict process’ had been allowed, variable (even ‘dysfunctional’) relationships with commissioners and a complacency of attitude that was characterised as a lack of awareness and transparency. The review concludes that the culture can ‘best be characterised as a combination of defensiveness and complacency in respect of quality, safety and risk‘.

It recommends that Sloven swiftly act to ask the right questions of senior managers and ‘gain more robust assurance about incidents, actions and outcomes’. It also recommends that Sloven review staff training requirements and work to reduce restraint use.

Nearly 11 months before LB died. Everything that needed to be known about STATT was known. Documented, stamped and signed. A legitimated torture chamber. Post Winterbourne View.

We, knowing none of this, drove our beautiful and beyond loved boy, a couple of miles along the Slade, that cold, dark March evening. To his death. A death that could not have been more clearly written on the walls of Sloven Health and others.

You absolute bunch of fucking bastards.

Talking board level

Justicequilt-5So. The call with the Sloven Board Chair. His answers to our questions can be read here. A lot of the call involved going through these, in turn. None of them stand up to much/any scrutiny. And little changed during the call.

A culture of I/we’ve been informed that this, that and the other happens, or is about to happen, without supporting evidence, seems to permeate Sloven Towers. And wider.

Fun and photies

Had a crap day on Sunday, flung back into a space in which I couldn’t quite believe that LB died [he died?] the way he did. I think about him pretty much every waking moment but the way in which he died is (necessarily) pushed to the margins most of the time.

Later this afternoon I’ve got a call ‘booked’ with the Sloven Board Chair, Simon Waugh, to discuss the answers he eventually sent in response to our questions around Sloven actions to LB’s death. These answers pretty much say nothing. Other than ‘Er, it wasn’t us guv’ or ‘It was the non clinical staff’.

I don’t want to talk to him. Like I don’t want to chase up the Central Southern NHS Commissioning Support Unit to ask why 6 months of records were missing from my access to record request last week. (No answer yet). Like I don’t want to lug a case full of beyond ridiculously Sloven redacted text to an information specialist*. Like I don’t want to read document after document detailing unspeakable ‘provision’ in Oxfordshire with a forensic eye*. Like I don’t want to wait years for any accountability or justice for something that was just off the scale of fucking wrong and we all know it.

I don’t understand (and this is what dominated Sunday) how a young, isolated (in spite of having a full on loving family) person, who was fit and healthy, could die a preventable and beyond imaginable death. By anyone’s standards. In a publicly funded organisation. A heavily staffed apparently specialist NHS unit. [Just add whatever into this space. There are no words. Nothing we can grasp, real, imagined or otherwise. Just a situation of horror and utter despair.]

Katharine Chrome (the wonderful Who by fire blogger and one of the legendary band of forensic shite analysts), tweeted earlier that an old post of mine that re-surfaced at the weekend reminded her of the time when this blog was about fun and photies. Blimey. Yep. It was. And a celebration of quirky family life.

Constantly snapping pics is one of the many things that has stopped for me. Like having a bath. Smiling at strangers. Reading a daily newspaper. Being wildly optimistic. Feeling content or relaxed. The rippling consequences of experiencing such a catastrophic event (and the full weight of a bullying NHS Trust for over a year now).

I hope that the fun and photies will return at some point. #justiceforLB has been a breath of fresh air really. A complete tonic in the face of such shite. If this astonishing, unprecedented, collective force of dedicated, committed, loving, full on, spontaneous, irreverent, thoughtful, creative, artistic, informed, hilarious, energetic, dogged, expert, generous, completely voluntary, skilful, diverse, different and rule breaking embracing gaggle of awesomeness, can’t generate meaningful change, then it really is time to give up.

So, here’s to this afternoon. The next stop on the Sloven slow train of prevarication and dirty tricks. And a cheeky number suggested by Matthew Smith.

  *There has been some legendary, behind the scenes work, examining what appears once these hefty stones are lifted.

The Sloven way: a lesson in arrogance and worse

Reading the emails from Oxon county council and clinical commissioning group, I’m struck (again) by the astonishing arrogance of Sloven Health. I’d already heard that when they did their royal tour of Oxon to smooth over the ripples caused by LB’s death, the failed CQC inspections and Verita’s damning report, they came across appallingly. Gail Hanrahan describes one such meeting brilliantly.

I’ve only heard Sloven senior team members talk on the radio/TV news but it’s a throwback to past decades to hear people clearly lacking any understanding about learning disability talk nonsense about ‘the modern way’ and ‘false positives’.

This arrogance is also captured in the Oxon email exchanges about this tour. In one meeting they were apparently concerned that the focus on learning disability in “the north of our patch” was impacting on other services they deliver, and they appeared offended to be asked for a copy of their ‘detailed action plan’. The too big to fail monster clearly in action.

The letter KP wrote to us a month or so ago is another example of this. A letter steeped in ‘I’m absolutely right’ statements and worse. A document  that will surely become an exemplar in ‘How not to engage with families of patients who have died through  a dereliction of duty of care’ events in the future.

The story leaping out from the (hundreds of) pages of emails, reports, minutes from across the board, is that Sloven took over crap provision, did nothing to sort it and are pretty irked that the likes of the CQC and Monitor are now breathing down their necks.

Something is badly wrong when an NHS Trust demonstrates what we’ve seen and continue to see in last 15 months.  NHS provision should surely be about continually trying to enhance and improve care provided. What else does it exist to do? (Obviously we have views on this but here we’re talking about what they ought and are funded to do).

Meanwhile, Sloven merrily collect HSJ awards while the police continue their investigation into LB’s death.

I suspect part of this arrogance comes from having apparently unlimited funds to try to make ‘problems’ disappear. Unlimited funding to chuck at legal teams to outmanoeuvre the odd family who are able (in a beyond unequal playing field) to avoid being crushed in the early days and just about drag themselves to the finish line years later.

A barbaric, inhumane situation. Seemingly condoned by those who must have the power to stand up and say “This ain’t right.  It stops now,” and don’t.


Playing real good for free…

Justicequilt-3Another week of disturbing revelations and communications. The social care/commissioning group communications are worthy of a PhD in themselves. We’re still waiting to hear why a 6 month chunk of these are missing… though suspect it may be shoddy mcshod biz as usual. Pretty damning really that we hope for incompetence other than worse explanations. The anticipation of ‘good’ or ‘pretty good’ has long disappeared in this murky and devastating tale.

Simon Waugh (Board Chair) also responded in writing to our questions. I’m happy to park the content of his response until we’ve had a call with him early next week. In line with the anticipated/hoped for incompetence above, I sort of hope he is not fully aware of the level of the awfulness of  Sloven actions over the past few years. For those of you unable to wait for a sniff of the response, just imagine meaningless, offensive nonsense.

At the same time, this week has brought more of the good stuff. The extraordinary stuff. So many people doing things, different actions, big and small, to contribute to generating change, for justice, and a shake up of what is a rotten and rotting system. So much good work.

I lose track of how many times emails ping backwards and forwards in the justice shed just stating ‘Wow’.

And it’s all done for free. Astonishing. Wondrous. And one of my favourite Joni songs.

A social media affair

ryan5-26Mid afternoon yesterday an unnamed person turned up at work, managed to find our office, handed over a memory stick, read out the password for me to unencrypt (disencrypt?) the files on it, checked they could be opened, got me to sign a letter and left. All very secret squirrel.

I was left with three heaving PDFs. Communications from Oxfordshire County Council and Clinical Commissioning Group mentioning me and/or LB between March 2013 to 27 July 2014.

I’ve only glanced through this stuff. Hundreds of pages. So just wanted to jot down my initial thoughts. In no particular order. And ignoring the stuff of ongoing police investigations.

There is pretty much no recognition/acknowledgement or reflection a young man died and he shouldn’t have done. No surprise now really. It’s largely about blame, self protection, reputation and process.

The pages are littered with mentions of ‘mum’. Please ditch the ‘mum’ stuff. It’s so blinking patronising and degrading.

The records start in September 2013. A six month chunk is missing. More carelessness or incompetence (or worse). Either way, not acceptable. Simply unacceptable.

Redactions are reasonable. Mostly names and occasional small sections of text blacked out.

Hints of sensible thought are present which is refreshing. Reflections that the findings of the Verita report are awful and media coverage can only be negative, for example.

A stand out thing is surveillance. There are transcripts of the Phil Gayle show (in which the Gman shines through with his piercing questions) and twitter, this blog were a constant source of discussion and even information. Rich’s ‘Move on down the Bus’ song was circulated among the CCG. One commissioning bod found out about the ‘bath ban’ on these pages. (For info, apparently it was instigated by a ‘nervous’ consultant and was lifted on the day of the CQC inspection… Any news on the staff disciplinary actions I wonder?)

I tweeted yesterday that I was beginning to understand the viewing figures of this blog. It must be bookmarked across Sloven Towers, the local authority and CCG. And, I suppose, other organisations outside of Oxfordshire who may be following with a mix of fascination at the complete shiteness of the whole situation and relief that they ain’t involved/implicated.

Of course it doesn’t have to be surveillance. Social media has created a space that offers health/social care professionals alternative ways of gaining insight into the experiences of people/patients. And the consequences of their actions and the systems that underpin them. One or two people in these exchanges seem to get that.

Diminished societies and donations

The charity shop (can’t remember which one) collected LB’s belongings (the outer layer) this morning. A close encounters type mound of black bin bags and boxes of stuff heaped up in the front garden.

lb (141)

It was more painful than I thought it would be, given this ‘stuff’ had all been in bags for pretty much 15 months now. Pulling his well worn camouflage jacket out of one gaping bin bag, I went back inside and let Rich deal with the social niceties with Shane and his white van.

“Thanks for the donation! Much appreciated!” I heard the cheery call and slam of the van door a short while later.

My brain kind of bounced round in some kind of indescribable space while the bits left of my heart took a further pounding. Dust swirls. The pain almost too familiar now.

Within moments of Rich shutting the front door, the post arrived. A letter from Knoxville, Tennessee.

A copy of the approved resolution around what happened to LB submitted by Mark Sherry. And a letter that says it all really.


“As societies we are diminished if a tragedy like this does not spur us to do better.”

Yep. Couldn’t agree more.

Activism, academia and more quilt delight


It was the Disability Studies Conference at Lancaster University this week and LB featured pretty centrally. I gave my first presentation at the inaugural conference back in 2003 when I was a PhD pup. And LB was a bouncy 8 year old still wearing his ELC police tabard and orange binoculars.

ryan5-44LB’s bus picture featured on the conference signs/abstract book, delegates were given LB Justice quilt postcards and the quilt itself was officially launched (the story of the quilt can be read here).

The now legendary Chris Hatton said a few words at the launch (bit of a tissue jobby) and Mark Sherry (yep, Mark who made the #107days film from Toledo) read the approved resolution of the Society for the Study of Social Problems that relates to LB’s death. Such a remarkable happening. Solidarity from such an unexpected quarter and yet so blinking spot on. LB’s death is a social problem. A public issue.

Jack’s mum, Gina, brought some more of Jack’s cats to sell for the fund and he raised over £100. All material used in making the cats is recycled other than the felt.

There were also LB notebooks made by our lovely neighbour, Ruth, which went down a treat.








It was a dynamic, energetic, creative and emotional space. I know it always has been a cracking conference but the unfailing commitment/action of Hannah Morgan to create this focus on LB/the campaign and weave (sorry) it into the texture of the event was exceptional.

Activism and academia.

And the quilt is just bloody amazing.