Light in the shed

Posted on March 4, 2016 by sarasiobhan

I wrote an ‘opinion’ piece for the Guardian about the latest Bubb stuff this week. Loftier heights than this blog without the swears really. I’m flagging it up here because I’m chuffed they asked and beyond delighted it’s had so many shares and brilliant comments. Learning disability hitting a mainstream groove. About bloody time.

Today we’ve an extended family trip to Brighton. To watch 12 Angry Women at the Brighton Dome. Edana Minghella, one of the 12 commissioned writers/artists, has written a short play and composed a song about LB. Her script and song are simply spine chillingly brilliant. And devastating.

Yesterday, Edana was on BBC Radio Oxford talking about the play. [From 10.48 mins here]. Having walked past an Eddie Stobart lorry on the way to the studio…

Turns out Mark Attlee who plays Kenton in the Archers is the Generic Official Person (GOP). I don’t listen to the Archers. But Edana nails the contrast between the chilling interjections by the GOP (a lukewarm brew of Sloven, NHS England, CQC, Monitor, Oxfordshire County Council, Department of Health, coroner) and the love and humour that is part of many families’ everyday lives.

A photo from rehearsals yesterday.

So LB will be on the stage tonight. Nearly three years to the day he was admitted into the unit. A big old hanky moment. But how blinking cool?

A sordid little fail tale

Posted on March 1, 2016 by sarasiobhan

Back in the day (2011), a staff member wrote a letter to the Sloven CEO raising concerns about various things including safety. She concluded:

The CEO bounced the letter to the Associate Director of Governance who wrote back saying that there were concerns and unfilled vacancies in the governance team including a lack of suitably qualified health and safety leadership. An interim Head of Health, Safety and Security was to be appointed for 4-6 months.

This interim head was Mike Holder. A couple of months later, Holder resigned over concerns about Sloven safety culture. He wrote a report in Feb 2012 detailing these concerns:

At present it is my professional opinion that Health and Safety is considered an adjunct to the Trust’s core business rather and integral element of it. This assumption is based on my experience with the Trust to date, the lack of resourcing applied to the management of health and safety and information governance with regards to the maintenance of statutory records.

Blimey. Warning lights a go go.

But no. By this time the Sloven headlights were on an NHS organisation, the Ridgeway Partnership, 100 miles away in Oxfordshire which included the STATT unit in which LB died. Ridgeway had some chunky land icing to tempt outside Trusts (including Calderstones) to take it over.

The story can be taken up at this point by the shuddery Verita 2 report* which found that after Sloven ‘won’ the Ridgeway in November 2012, the roadshow bolted back to Sloven towers, more senior Sloven staff resigned and the Oxfordshire services were left to fester in a slow cooker of discontent, fear, malaise and isolation from the mothership. Extracts from the Verita report state:

6.42 Difficulties arose soon after the acquisition in ensuring the availability of sufficient senior and experienced divisional managers to take forward vital post-acquisition actions. In particular to progress actions arising from the various quality assessments that had taken place before the acquisition.

6.50 A ‘business as usual’ methodology for a newly acquired service may appear appropriate if the service being acquired is mature and relatively problem-free. This was not the case in the Ridgeway services. Contact Consulting had warned of issues in local leadership; governance of serious incidents, along with particular difficulties about care issues in non-Oxfordshire services. There was also a need to begin dealing with the cultural change required of an established learning disability service joining a large mental health and community trust with a small learning disability service.

The writing on the wall. A baguette crumb trail through the NHS forest of cover up, fakery, denial and self interest. From 2011 to the present day. Evidence, evidence, evidence. Death. And evidence and death.

So where are we at? Two months after publication of the Mazars death review. Almost three years since LB was admitted to what we thought was sharp, specialist unit with a tiny number of patients and a shed load of staff… Five years after the original whistleblowing letter? Hold on to your hats, folks. We’re waiting for Monitor (NHS snooze hounds) to appoint a temporary, er, ~~Head of Health, Safety and Security~~ Improvement Director.

Yes. Really.

*This report really makes your skin crawl in its tortuous weaving through damning evidence to a conclusion that the Sloven board were not connected to LB’s death. The author left Verita straight after it was published.

Goggle box and the Mazzwot review

Posted on February 29, 2016 by sarasiobhan

A student, Andrew, came round on Saturday. From Yorkshire. He’s doing a pre-university diploma in media and is making a short film about what happened to LB for his coursework and to raise awareness among the students at his college. He was sensitive, quiet, thoughtful and careful in setting up his equipment. In conducting the interview. It couldn’t have been an easy task.

Yesterday Liz (who brilliantly maintains a spreadsheet logging all mention of LB and #JusticeforLB, together with easy read/more accessible versions) noticed that the (approved) CQC November board minutes reported that LB died through misadventure. The CQC Trustee she raised this with immediately apologised and said he would make sure the minutes were corrected. (The full jury findings can be read here… [Howl]).

Sloven, as regular blog followers will know, recorded LB’s death as natural causes in their board minutes a few weeks after his death. Minutes that have never been corrected.

Maybe some people reading this will be thinking

Bloody hells bells. Give it a rest, you lot. Banging on about tiny details. Christ. We’ve enough on our plates, trying to do our jobs with less and less dosh. More and more figures to produce, boxes to tick, vanguard type activity to bufferoo. Jeez…

But this stuff is important. It’s deeply important to us how LB’s death is reported/recorded officially. To state he died naturally, or through risks he took voluntarily, is wrong. But it’s of importance, or should be, to all of us. The minuting and approval of inaccuracies by public bodies raises various overlapping questions/concerns.

Most obviously, how? How can such inaccuracies be noted, written, approved and published? Is the detail so inconsequential? Is the process of interminable meetings and equally interminable minutes a hollow, meaningless process? How many people – in the official chain of leading, acting, communicating and doing – are simply slumbering on the job?

Why are the minutes inaccurate? Are they typically riddled with inaccuracies or are these inaccuracies related to particular assumptions/prejudices? The old learning disability goggles filtering out anything to do with certain people as irrelevant. Un-noteworthy. The Mazars review found hundreds of deaths similarly discounted, ignored, brushed aside.

The response to the Mazars review – eh? The what? M? Mazzwot? – further illustrates and underlines this inertia, this disinterest. The lack of care, concern and disregard. Why bother to keep accurate minutes when an independent review of your practices revealing deep rooted failures at board level is brushed aside? There are no consequences.

And what does all this say about the regulatory processes/bods that flit, fancy and dance around NHS Trusts? Clearly knowing they’ve sort of got power that they ain’t ever going to use? A grotesque kind of playground hopscotch where everyone is simultaneously covering their eyes, pocketing the best stones, rubbing the chalk lines away and guffawing over what a great playtime it was in the kids toilets and staff room. Going home to reconstruct the, at best, deep slumber or unsavoury practices they generate, indulge or witness to their loved ones and friends.

Slumbering continues possibly because most people aren’t rendered invisible. And couldn’t imagine being imprisoned in a room, fed through a perspex hatch for nine years, at a cost of £12,600 a week, without the weight of the state sweeping in with the justice batten. They couldn’t imagine having one of their kids drown in a hospital bath. Or locked up for 10 years for no crime other than a lack of appropriate support in the community. But the continued silence around these atrocities is… what? I’m almost out of words.

The mothership, blunt instruments and telling again

Posted on February 25, 2016 by sarasiobhan

I had a phone interview earlier with an investigator investigating Sloven nursing staff on behalf of the Nursing and Midwifery Council (NMC). This has taken so long to happen because Sloven spent an age and a day doing their internal disciplinary investigations [of course] and consistently refusing to say who they were investigating [of course]. We referred a consultant to the General Medical Council (GMC) back in May 2014 after being told by ‘a source’ she’d done a bunk. The nurses weren’t so clear cut.

So today I found out the names of the six referred nurses. Six. And no medics. The Sloven sloven industry as always delivering pure shite. Take over (land lucrative) provision from afar, leave it to sink into a hellhole of discontent, malaise and fear and, when the inevitable shitola happens, make sure no one within a fifty mile radius of the mothership catches any of the fall out. Particularly anyone approaching board or CEO level.

In her opening spiel, the investigator offered me the services of a liaison officer to ‘provide support during this process’. Bit late in the day for that really. It reminded me of the Health and Safety Executive leaving us a booklet about what to do after the unexpected death of a family member. About 18 months after LB died. Learning point 1,345,987 If you come into contact with families some while down the grief and bereavement road to nowhere, perhaps think about the standard bells you typically offer and frame them appropriately…

Next stop was the blog.

‘You, er, write a blog. Could you not write about this, it may disrupt the process…’

Mmm. There wouldn’t be a process if I didn’t write a blog. And despite the ludicrous shrieks of the Dr Crapshite brigade, I’ve not been a name shamer on these pages. (Well not below leadership level… the likes of KP, Petter, Jacko and Hudspeth who I reckon get paid to swallow the pill of possible publicity). I agreed to not mention the content of the interview.

Then we were off.

It was so blinking distressing to go over everything again. Even more distressing, if that’s possible, after experiencing LB’s inquest and hearing the (still not quite) full story of what happened. Layers and layers and layers of wrong that simply scream out. While crap all happens.

‘Can’t you use the context I provided to the GMC?’ I asked after the first question.

‘No, we need to have what happened in your words.’

‘They were my words‘, my brain screamed… like they were for the police. For the coroner… for Verita. Learning point 1,345,988 There is no justification for repeated telling when the telling has already been done in an official capacity unless people want to. Otherwise, agreement with the person/family that they are happy for a cut and paste version to be used from another official telling should do. There is always the option to add or delete bits at the next stage.. [Howl].

Such disconnect among the various arms of the (non) accountability dance. A fresh beating with a blunt instrument on each iteration (I now suspect with even more nails as the futility of the telling becomes more and more apparent). Perhaps 1,345,989 should be a brief note, early on, stating:

Now you’ve experienced the worst thing you could ever (not dare to) imagine, we’re going to spent the next few years or more (well as long as it takes) torturing you in a combination of bureaucratic, thoughtless, deliberate, ignorant and incompetent ways…

Yours,

The State

‘Do you want a break?’ asked the investigator several times during the interview.

My brain seemed to be hosting a particularly absurd but unavoidable horror show that made it difficult to speak. Sitting at work, I drilled the phone into my ear and sort of strangely gargled, cried, caterwauled and clawed my way through the following hour. I didn’t want a break. I just wanted it over.

[Final reflection: I had the odd moment while writing this post that I haven’t had before. Would I somehow jeopardise the NMC investigation. Not by disrupting the process but by simply pissing them off? I don’t know. But we’ll never know anything if things remain secret.]

Stupefying Bubb and the light fantastic

Posted on February 23, 2016 by sarasiobhan

A while back, Simon Stevens, NHS England CEO, appointed/commissioned Stephen Bubb to chair a steering group looking into the provision of learning disability services/assessment and treatment units. I dunno if anyone understands why. Bubb’s final report was published earlier today. The report can be read here. I’ve not read it.

Andy McNicol did a cheeky bit of totting up earlier:

His word count doesn’t quite capture the stampede of activity. Back in the day. The ill informed, knee jerk, caught on the hoof, government response to Panorama scenes of abuse. Flattened by a bunch of organisations (48 in total) scrambling to get piece of the sudden, unusual and unexpected funding.

Some years ago now, Tom got a Harry Potter game for Christmas that involved wand waving and repeated half whispering/hissing ‘stupefy’. I’ve not read Harry P nor seen the films but we did a lot of ‘stupefy’ hiss/whispering that year.

Dunno why but this word kept dancing around my brain when I read the responses to Bubb’s offering. I googled and learned what every Harry Potter fan knows. It’s a ‘stunning charm that renders people unconscious and halts moving objects’. And the more wizards aiming at the same target, the more the power is increased.

Ah. This may have legs. What trickery is being woven by the usual suspects around the latest (non) report? All firing at the same target [no real change].

That the abuse of learning disabled people only started with the Panorama expose. There is no pre-Winterbourne View.
That “now is an opportunity to restore faith, where so far there has been repeated failure, and build the community support people with a learning disability and their families want and have been promised.” (Mencrap/Challenging Behaviour Fundation) Those of us not under a stupefy spell (and with access to the internet) can remember how back in November 2014 they were bleating on about welcoming “much of what is included in Sir Stephen Bubb’s report, but it must now lead to a clear plan and urgent action.” Same words. Different order.
National Autistic Society wizardry? The Bubb recommendations are “good and should be considered carefully by both the Government and NHS England”. Stupefy
And the government response… A half arsed refrain of ‘there may be trouble ahead’ coated with super stupefy moments; ‘”it is believed that…” “transforming care for thousands…”
Oh, and no mention of the Mazars review.

These made up responses to a made up report continue to erase history, erase life, erase hope and deny imagined futures. No one in any position to do so has the guts to call it for what it is. And the grotesque dance continues.

What a bunch of fucking losers.

Right Betfred, IPSIS and the ‘statement of hope’

Posted on February 21, 2016 by sarasiobhan

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.

Questions from the public

Posted on February 18, 2016 by sarasiobhan

A short post. I read this extract from the latest Sloven board minute papers last night and had one of those moments when I couldn’t see the screen for tears. James should not have died. Mike Holder wrote to Katrina Percy in 2012 detailing the safety concerns he had. These concerns were ignored. The CEO and board didn’t care.

Mrs Younghusband should not have to go to a NHS Trust board meeting to say the unspeakable.

There is a clear and incontrovertible link here between corporate decision making and James’ death. And the slimy Sloven bastards tried to stop Mrs Y from taking civil action by limiting the time she has to act.

The lack of action by those who should be acting (Monitor, Department of Health, NHS England, CQC, yawn-di ya-di da) makes me wonder when most of the principles guiding the NHS were ditched? Southern Health NHS Foundation Trust is no part of a National Health Service I recognise or believe(d) in.

Board meeting

This ain’t going away

Posted on February 16, 2016 by sarasiobhan

Mid Feb. And no action about the Mazars review. Extraordinary. I watched a documentary last night from 1981. Silent Minority. By a filmmaker called Nigel Evans. (He died recently but there are several of his documentaries on youtube and I recommend dipping in. A remarkable archive.)

Earlier today someone asked me if I thought anything will happen with the Mazars review. A question I think we never thought would be asked, back in the summer of 2015, when early findings were shared with the review panel. The findings evidenced a barbaric disregard for the human rights of certain people that could only be a matter of national importance. The leaking of the Mazars review, and subsequent debate in the House of Commons on December 10, supported this.

And then tumbleweed. A cynically timed ‘offical’ publication date just before crimbo and crap all meaningful action by NHS England, Sloven, Monitor, CQC and Jeremy Hunt since has generated serious despair in the Justice shed.

This negativity was reinforced last week after listening to an update about the Learning Disability Mortality Review programme (LeDeR) based at Bristol University last week. A watered down version of a national mortality review board because the government (previous and current) thought premature deaths of learning disabled people weren’t worth proper funding. A piecemeal programme with little independent scrutiny and rigour (and unfunded public involvement).

Strangely, I started feel more positive today. Helped, in part, by various tweets, emails, facebook posts highlighting the obvious lack of fit between ‘official’ talk and people’s lives. And regular emails/messages relaying sometimes small changes and shifts. Unlike in 1981, social media allows a diverse range of different people to collectively come together, contribute, support and do stuff. #JusticeforLB is increasingly known about in a way we never imagined. In March a short play by Edana Minghella about LB will feature in Twelve Angry Women in Brighton. The Justice quilt will be on display at the Kings Fund next week. Plans are underway for a late evening choral event alongside the quilt in the Warwick University Arts Centre in the summer.

The Mazars review clearly highlighted eugenic practices embedded within the structure and processes of at least part of the NHS and social care. This ain’t going away. And the non action by those who should be acting is starkly visible. The atrocities highlighted by Nigel Evans (among others) which continue today in different versions remain beyond wrong. We have options he could only have dreamed of back in the day when the content of his documentary was challenged. That his work is freely available on YouTube underlines the potential for social media to render these happenings visible and ensure they remain so.

[Photos are from the recent extraordinary Sloven Board meeting. Thanks to Saskia Baron for the Nigel Evans link]

Postscript: Bizarrely, just a few hours after posting this, Rob Greig published this article in Community Care, saying similar.

Non action and a ‘Licence to kill’

Posted on February 2, 2016 by sarasiobhan

During a departmental meeting today, a colleague gave a talk about a project he is involved with; Human Resources for Healthcare in Africa. Part of this work is focusing on how to reduce the shocking mortality rates of children under 5 in Mali and Uganda.

He talked about the drop in mortality rates that emerged as an outcome of the setting up of the Confidential Enquiry into Maternal Deaths in the UK in 1952. Setting up an enquiry into deaths in Mali and Uganda seems to have, similarly, led to a drop in mortality rates. One reason being that once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided.

Leaping to this talk from mundane discussion around office moves and desk space left my head spinning.

…once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided.

As simple as.

Meanwhile, in the UK, talk of setting up national board to look at the premature deaths of learning disabled people after the shocking mortality rates identified by CIPOLD was watered down into a mortality review programme. Seemingly serving a ‘pointing to’ function. ‘Look… Bristol University are doing this.’

…once healthcare professionals knew that these deaths would be investigated, they started paying more attention to the care they provided….

And once health and social care professionals/organisations witnessed the abject lack of any substantive action by the government response to the Mazars findings they all got a symbolic ‘get out of jail free’ card.

No reason to pay any more attention to the care provided.

Business/death as usual.

2016. Starting as we mean to go on.

Posted on January 2, 2016 by sarasiobhan

I don’t know. I don’t know if it was Chunky Stan’s death this week which was so blinking sad but immensely peaceful. Or the start of a new year. But the Justice shed is cranking up the volume. Enough is enough.

First. A letter to the Southern Health NHS Foundation Trust Council of Governors: gov 1