State of ‘play’

Had a twitter rage flurry just now. It happens every so often, coming almost out of nowhere in terms of timing. I appreciate people’s fortitude to suck it up really. It must be off the scale of tedious. Anyway, it reminded me I should update the state of play right now in terms of gaining some sort of accountability for LB’s death. This may be useful to families like Thomas Rawnsley’s, and others who are earlier on in this toxic process.

In no particular order (because there is no particular order):

1. Verita 2. A broader independent review building on Verita’s original report, exploring issues like Sloven leadership, systems, mental capacity and learning disability services in Oxon. Commissioned by NHS England and the Oxfordshire Adult Safeguarding Board.

Six month review started in September 2014 (appointed June time). Completion date? Fuck knows. [Notes: We have a rep on the investigation panel but she is failing to secure information any better than we are. The local NHS England team told us in March 2014 they’d keep us informed of developments but never get in touch unless we contact them.]

2. GMC investigation. A referral by us because of lack of action by Sloven.

Started May 2014.
Due to be completed? Fuck knows. [Notes: We get regular, unsolicited, progress reports from the GMC which is something.]

3. Police investigation.

Started July 2013, re-started around March 2014.
Due to be completed? Fuck knows. [Notes: We got regular updates last year but no news since the pre-inquest meeting January 13.]

4. Health and Safety Executive Investigation. Someone from the HSE sat in our kitchen several months ago. A few HSE leaflets make me think they must have done and we didn’t dream it, but no direct communication from them in any form at any point. Could be figment of imagination.

Started? Fuck knows.
Due to be completed? Fuck knows. [Notes: I just found the business card of the inspector who visited. Someone (not me) has pencilled ‘arse’ above her name.]

5. Sloven staff investigations. The stuff of legend. Almost as extraordinary as 4. above.

Started? Fuck knows.
Due to be completed? Fuck knows. [Notes: Latest communication from Board Chair, Simon Waughpath, is that the delay has been due to factors out of their control. As ever.]

6. Mazar review. Reviewing deaths in Sloven learning disability and mental health provision since 2011, commissioned by NHS England.

Started November 2014 for four months. Due to be completed? Fuck knows. [Notes: As 1. Sloven are reporting a publication date of late Summer.]

Wow. A full house of fuck knows. Impressively off the scale of crap.

I mean what did LB matter really? And our lives? Smashed out of recognition by his death. What do we matter?

State of play sums it up really. A game to all those implicated in some way. Drawing their chunky old salaries while the months go by. Unchecked. And we’re told fuck all.

Stay classy. The lot of you. It is an astonishing spectacle.

Another week that was

What a week. Starting with a speedy East Coast train trip to Scotland and back for work. Interviewing learning disabled mothers about their birth experiences. Spectacular scenery, cheeky photos and enforced work space on the journey.

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Got a Stinky Pete response from Sloven Board Chair on Thursday and pre-recorded an interview with Radio 4s You and Yours about Norman Lamb’s No voice unheard, no right ignored Green Paper that afternoon. A bit of an odd situ, sitting alone in a room at BBC Oxford with a set of headphones, bootleg copy of the Green Paper and microphone, waiting to speak to Shari Vahl about LB and the campaign.

Made me feel pretty sad really but it wasn’t as awful as the first time I did it. Back in the day.

The Green Paper was published yesterday with a good set of responses, commentary and media coverage [eg. Community Care, Oxford Mail, BBC and Rights in Reality]. We produced a campaign response in typical Justice Shed type fashion: part tongue in cheek, part cutting (we hope), passion drenched and last minute/skin of the teeth type jobby. Norm, love him, was heartwarming in his recognition of the trouble and toil we’ve* been undertaking. And a complete sob (in a good way) moment for Connor.

Norm

[Update: good summary piece in the Guardian too].

I was working at home. My mum had volunteered to transform the out of control mass of stuff/paperwork in the Justice Shed into order.

This effort was partly to find a missing (seemingly crucial) record in getting #justiceforLB. One of those documents you can’t help thinking really? This is necessary? What is being denied rather than asked here? I worked my way through my usual cone of shame work tasks while my mum cussed about the lack of dates on various letters/documents, efficiently magicking a mountain into three, well ordered, neat boxes. Three? Wow.

The missing record was nowhere to be found. I called the GP surgery to ask if they could provide a replacement copy. Sigh. Not a good call to make. Er, record, yes. Relating to our dead son…

Yes. His name is/was/[howl]. It may be under my name… Thank you.”

I walked to the surgery and picked up the record. Another line in Sloven’s bizarre ‘We completely accept LB’s death was preventable but, at the same time, our legal team will continue to do everything in their power to overturn some stone to get us out of the shit’ approach closed.

Then today. The first day of filming for the LB movie produced by My Life My Choice with Oxford Digital Media, funded by Oxford City Council. Filmed in the Jam Factory. As it probably should be.Justicequilt-80

*For any new readers to this blog, I just want to clarify that #justiceforLB and the #LBBill are collective endeavours. Crowdsourced contributions from all sorts of people (an explosion of diversity, colour, brilliance, cheekiness, humour, passion, commitment, rule breaking, sense, and love).

Monitor lizards at the Sloven Corral

Another remarkable letter today from the Sloven Board Chair (who I’m now beginning to think might be deluded). We’re still thrashing through various issues around Sloven’s behaviour since LB died. Real scum bucket behaviour. Perhaps not surprising really given the Kirkup report this week that details shockingly awful actions in another NHS “Trust”. We’re clearly a way away from candour, honesty and transparency. Despite all the blather.

So. One part of the letter was about social media surveillance. Mr Waugh states

Like many organisations, the Trust monitors media and social media mention of its name, hence the content of the briefing to which you refer. This does not constitute surveillance of an individual.

Mmm. A quick Oxford dictionary search…..

Surveillance: ‘close observation, especially of a suspected spy or criminal’.
Monitoring: ‘maintain regular surveillance over’

Ok. Not sure the monitor/surveillance distinction is holding up here. I blogged about this issue a while back but a screen grab is helpful for a quick glance. Yep. Clearly monitoring. The blog written by the mother. An individual. A specific and targeted close observation (particularly given we rarely mention the Trust by name (unless it is now actually called Sloven)).

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This briefing was written and circulated one day after LB died. [He died?] How the Board Chair of a public body can continue to be so deceitful and underhand to the family of a child they let drown in the bath is unfathomableYou were monitoring/surveilling my social media activity and it was more important to your organisation to think about reputation protection, less than a day after our son died, than seriously look at the service being provided in the STATT unit.

How can this level of dishonesty and immoral action possibly be allowed to continue?

The orange bag and the harvest festival

Last Friday when we had the LB film meeting, Sue (Charlies Angel) dropped off an orange bag of LB’s school work she’d had in her car for months. She was never sure when was a good time and, until last week, I hadn’t said ‘Cool, I’ll take it now…’ Dunno why I did then, but I did. Funny thing time.

I’ve dipped into it slowly over the week. A mix of pain and preciousness. Among other bits, 3 arch level files documenting carefully and in great detail LB’s school work in later school years. Bringing back memories of some stuff, like the egg of trust, written about on these pages. And some things I didn’t know about.

This made me chuckle. Before his pagan and drum and base years, clearly. Love him.

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Blistering billy bullshite

The CQC Sloven inspection findings published today are something that demand careful reading. Remaining mindful of the amount of behind the scenes preparation and coaching that goes on for these inspections.

Brief headline: overall finding requires improvement.

We heard of many new initiatives and the trust was continually looking for ways to improve. However it was clear that time was needed to fully realise the scale and complexity of the changes and embed these across the trust.

Mmm. The bar clearly set so blinking low from the off. Businesses can have teething problems expanding, take-overs and the like. Mistakes can happen. For trusts those mistakes have high stakes. Like LB’s life. [He died?]

Growing so big, so fast and spreading yourself so thin across a wide geographical area inevitably ain’t going to work well. As the report today illustrates.

And a startling number of issues identified in previous CQC inspections in Oxfordshire that still occur. The stench ridden “Always about to…” model very much alive and kicking still in Sloven Towers. ‘Point a CQC inspector at us to show us the right route and we’re on it‘ jibberjabber spewing like vomit from a carsick toddler.

Only they ain’t.

Todays batch of failings:

Not enough staff, delays in the supply of equipment, mismanagement of medicines, buildings unfit for purpose, ligature risks, inappropriate seclusion and restraint practices, lack of crisis services and an unanswered crisis line, lack of available local beds, lack of examination of patients by doctors on admission, long assessment waits, uncertainty and low morale among staff, inaccessible records.

There’s some positive stuff I’m not going to record here. The positive stuff is people doing their jobs properly. Good. But not remarkable. The above list, combined with previous CQC inspection findings should lead to action. Not nonsense ‘learning fluff’ spouted by Sloven execs but real action. This bunch of muppets clearly should not be running an empire of crappy healthcare provision across four or five counties.

I worked at home today. Unexpectedly. And the phone didn’t stop ringing. Various people asking for thoughts about the report. There have been some cracking responses (in addition to the now legendary local news coverage). Andy McNicoll at Community Care and Chris Hatton’s contributions are stand out moments.

But hey, what about the Slovens? How have they responded to a grandly piss poor review of their services? Particularly  given their obsession with awards and all things shiny?

In a typical Sloven way.
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Always about to… a very Sloven condition

Heard on the grapevine the big old CQC inspection of Sloven will be published tomorrow. Probably good timing to have a little whizzle through some CQC inspections of Oxfordshire based Sloven provision conducted since LB’s death. Particularly given we’re a year on from publication of the Verita investigation into LB’s death.

STATT/JOHN SHARICH HOUSE [November 2013]: No therapeutic interaction, illegal deprivation of liberty, privacy, modesty and dignity of patients not respected, impoverished environment, family and friends not involved, inappropriate risk assessment, lack of training, no understanding of neglect or institutional abuse, mismanagement of medication, out of date oxygen, no battery in the defibrillator, out of date oxygen, unsafe buildings, ligature risks, faeces on chair, inadequate quality monitoring, inaccurate record keeping, poor engagement between management and staff.
Sloven response [Katrina Percy] The team are reviewing internal processes and providing “the leadership and knowledge required to ensure best practice is shared.” 

PIGGY LANE [March 2014]: Lack of staff (a “problem with the Sloven recruitment practice”), lack of appropriate assessment, care, treatment and support, poor engagement between management and staff, delay in getting necessary equipment, lack of records about safeguarding incidents, inaccurate medical records, out of date medication, poor management. “It is so unsafe here at times, you have no idea“.
Sloven response [Phil Aubrey-Harris]:  We have reviewed the levels of quality and immediately put in place an action plan to address all of the issues raised. After subsequent re-failure in June 2014 Sloven unattributed response: a “robust action plan” has been put in place to ensure it was compliant in all areas.

EVENLODE [April 2014]: near miss incident in seclusion, ligature risks, poor engagement between management and staff, a culture of “listen but do nothing constructive”.
Sloven response [Lesley Munro] welcomed the report and took the findings “very seriously”. Necessary building works to ensure the unit is fully compliant were “due to be completed imminently”. 

HOUSE 2, SLADE HOUSE [Jan 2015]: No registered manager, not enough staff, lack of leadership and poor engagement between management and staff.
Sloven response [spokesperson]: The CQC report acknowledges that appropriate actions have been taken in response to their concerns, in most cases, on the day of the visit, that was over 4 months ago. 

Wow. A seedy, foul little whizzle. I almost apologise for dragging you back through it. Still. Big statements from Sloven big guns about stuff about to happen or be put in place.

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Must admit, I’m baffled beyond bafflement the more I learn about the workings of the NHS. Particularly this whole patient safety stuff that is big at the mo. Details circulating on twitter this morning about the latest HSJ money spinning awards [for a full analysis of previous HSJ delights, click here] now combined with the annual Patient Safety Congress.

What confuses me is the content of this congress (concordat/concrap). ‘Making the business case for safety‘ and ‘Preparing for a CQC inspection‘. Eh? Patient safety? Isn’t that about keeping patients, er, safe? Not number crunching and coaching to pass inspections. Serious brain melt stuff.

At the same time, at a more personal level, the Sloven board chair last week reiterated Sloven’s acceptance of the Verita findings and recommendations into LB’s death. One of the reasons the Sloven bigwigs wanted to meet with us apparently was to confirm their “absolute acceptance of every aspect of the Verita report”.

Oh. That’s a bit odd. Why the hell are they wasting public money having a legal team, including barristers, who have tried to narrow down the scope of the inquest then? Why have legal representation at all? 

I just don’t get it.

It’s like the music is playing loud and clear, but Sloven, and the NHS, insist on dancing to a different tune.
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Cup of tea, bit of a sprint and the Jam Factory

Oxford City Council have funded My Life My Choice to make a film about LB. Oxford Digital Media (ODM), a hip and happening video production company, are working with them. (Here’s an example of a recent collaboration between the two organisations, both based in the Jam Factory). Coolsers gone wild.

This afternoon, Sam and Guy from ODM came round to meet a few people who knew LB well and get a bit of an idea about who he was. There was no end of stories and laughter. Including a bit of back story about a set of tea making pics that have been pinned on our fridge for a few years.

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LB rocked the tea making with some novel adaptations. And a cheeky bit of sprinting that still makes me chuckle.

Waugh? What is it good for? Absolutely nothing

Received a response from Simon Waugh (SW), Board Chair, Sloven Health this afternoon. That it came by email is about the best thing I can say about it. Selectively copied in to the cc list (bypassing Katie Razzall, Newsnight and JusticeforLB headquarters).

Brief context: We had questions, Katrina Percy refused to answer them, SW answered them Sept 17 2014. In a really crap way. In such a crap way I arranged to talk with him on the phone (23.9) convinced he wasn’t really up to speed with what was happening under his watch.

The big conversation back in September? A mistake really other than the occasional droplet of insight. We’ve continually shot ourselves in the foot and made ourselves look as incompetent and uncaring as possible. Er, yep. The truth is simple. His care was not what it should have been. Yep. SW also said he’d learned to reflect about being on the receiving end of letters from him in his capacity as Board Chair and think about what it must be like to receive such a letter (does it help or does it widen the gap?). Good stuff. (Though this was in connection with sending my sis a letter meant for another patient, rather than real reflective stuff about the content and meaning of what you write).

Unfortunately, these drops were obliterated by a drill hammer communication style, clearly aided by a set of key points) that looped across the two hour conversation (LB was fab, fit and able, staff forgot he was a patient, Sloven appear crap (but ain’t really) and there are valid excuses (or cliches) for everything). Once the repetition became apparent, it was a really uncomfortable conversation.

A couple of examples of the excuses:

Sloven didn’t dive into the unit to see that the hell was going on when a “fab, fit and able” young man died unexpectedly in the bath [he died?] because the police told them not to. Mmm. Not sure about that SW. How come the CQC could just pitch up and inspect weeks later?

“Well you’re damned if you and damned if you don’t”, was the slightly tetchy non answer. Followed up by a seedy little attempt to lay the beyond appalling CQC failings as having occurred in the six weeks or so after LB died. That pesky cleaner walked out 10 days before the inspection… [at several points during this conversation I wondered if I would experience long term effects from the sickening rage it generated.]

The second example involves the other patients in STATT. SW wrote that “unfortunately” STATT patients were unable to attend LB’s funeral because of “the family’s understandable restrictions on staff attending”. Not true, I said. I explained how we wanted staff not directly related to LB’s care to bring them. Bluster bluster.. SW meant the other patients’ families thought their relatives weren’t in the right mental state to attend. Oh. Why didn’t you write that then? I asked. Puff, huff and puffenstuffen, Dr Ryan. He couldn’t possibly include every line he wanted to include in the letter. It would be impossible.

Another damned if you do and damned if you don’t situ. Clearly.

So, back to today. The emailed reply. First of all he attached the letter sent on Sept 17th for the partial cc list to read. The fudged and fake responses letter. That is pretty crap. He reiterated the fact we’ve refused to meet across two paragraphs. Yep. With regard to staff disciplinary actions apparently the final one is part-heard and will be completed shortly. Mmm. (17 Sept letter “The final hearings for the remaining investigations are scheduled to be completed in the coming weeks”. 23 Sept phone call, staff disciplines will be completed “in the next 2/3 weeks”.)  There have been no delays with the second Verita investigation and the incredibly insensitively timed email, sent on 23rd December, wasn’t sent by the Trust’s solicitor. Even though it, er, was.

Wow. Mr Waugh. That stuff about reflecting on letters sent, foot shooting and incompetence (or worse)… ? You got a bit of a waugh to go, I’m afraid.

The footy guy nights

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Most evenings, sitting in the front room, I end up looking at the floor. And think about LB. And spaces. Wow. He did a number on spaces. Occupying different spaces within our space. Like sleeping on the Billy bookcase as a tot. Or hanging out in the swing bin. Now that sort of space isn’t occupied it’s odd/hard to remember it ever was. Who lies on their side on the living room floor? Across years…

Back in the day, the footy guy nights were a pretty unremarked upon part of family life. Like so much other stuff. Absorbed into our ‘normal’.

old picsI look at the floor and wonder how he fitted. With Chunky Stan, and the Playmobile audience. It’s a tiny space really.

There was no guessing when the box of ‘footy guys’, goal and makeshift ball would appear. In a seamless and low key celebratory joining in of a mainstream footy event. In his own way. How the hell did he fit in that tiny space?

He sort of studiously ignored the match on TV. Applying sometimes silent, focused concentration on his match. Remarkable really as footy fell outside his typical interests. At the same time, he was fully engaged in the moment. Some of the real time match entered his commentary but his match had its own dynamic. And own moments. LB was no slave to premier antics. old pics (3)

I loved these footy guy nights. I loved his absorption in the match, played out with a ball made of scrunched up paper and Sellotape (made after the original tiny ball went missing). I also loved (without realising it at the time), how everyone fitted around him. Picking across the guys to sit down. Respecting his engagement.

LB kept his footy guys in a Spongebob box. The goal and ball were stored in an old CCTV camera box. Which doubled as the second goal. Everything carefully packed and stored in his room until the next time.

I photographed this one evening. I don’t know why. Or why that night. January 29 2011. He was 16. Capturing a school boy. Absorbed in doing something he loved.

As he should be.

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