We need to talk about Mencap

The CQC published a chilling review of a Mencap run ‘service’, Precinct Road in Hillingdon, on Friday. Yep. Mencap. Documenting so much so wrong I can’t summarise it here. A series of human wrongs.

This went under the radar until Mark Neary came across it this morning and started to tweet about it.  A teeny tiny (anti) press release was eventually published later today stating very woodenly;

Mencap takes very seriously any requirements and recommendations on how to improve the quality of support we provide. After a recent CQC inspection of Precinct Road in Middlesex we have apologised fully to the people we support and their families.

We have taken immediate steps and great care to fully address the actions outlined by the CQC’s requirements and recommendations. Our procedures and environment at Precinct Road have improved as a result.

Mencap is committed to ensuring that we offer the highest quality care to enable people with a learning disability to live the lives they choose to live.

This was missing the hallmarks of a typical Mencap press release; speed and a grandiose statement by the Chief Exec – usually in cahoots with the CEO of the Challenging Behaviour Foundation – ‘calling upon the government’ to do diddly squat. (Ensuring their continued seats at any table, breakfast or otherwise, where endless, pointless but costly discussions about the provision of services can be chewed over a doughnut or ten). Oh, and no link to the CQC report. Breathtaking.

I’m left thinking… Mencap (or Menace as my autocorrect keeps calling them):

  • How could you possibly be required to improve the services you provide given you are the (self proclaimed) ‘leading voice of learning disability’? With the £b?/millions you have at hand?
  • Why did it take a CQC report to make you act at Precinct Road when it’s clear from the CQC report that the problems identified were apparent for several months?
  • Why have you only apologised to the four people who ‘live’ at Precinct Road and their families? Surely you should issue a wider apology. To all those you ‘support’ and those who fundraise and volunteer for you?
  • How you can possibly say you are committed to ensuring you offer the highest quality care to enable people with a learning disability to live the lives they choose to live… when you don’t?
  • And finally. Are you a provider or a campaigning charity? Because you clearly can’t be both.

Sleight of hand mastery

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Went to a do yesterday that involved Rajan, the Magic Man. He’s a sleight of hand master. Funny old credentials but he was pretty impressive and entertaining. One of only 200 members of the inner magic circle apparently. A group that meet each Monday somewhere in Euston to share stuff they can only talk about with each other. Bit like academics but in bigger numbers.

I was struck by how Rajan’s performance contrasted with how Oxfordshire County Council (OCC) and Southern NHS Health Foundation Trust (Sloven) have behaved over the past two years in relation to what happened to LB. SlovOCC have consistently tried to distract attention from what happened. Using various sneaky practices including non-disclosure of documents. Categorising something as nothing, nothing as something. And smear tactics… Rajan used a combination of skill, experience, humour and charm. And a fair few cheesy jokes to disarm, distract, entertain and puzzle. SlovOCC have no finesse with their ‘trickery’. Instead they seem to draw on a bullying and/or incompetence combo.

This morning another red flagged email arrived at 9am from OCC. My subject access request from May had been, er, ignored due to an “oversight” and the deadline (today) had expired. It will now take another month. Eh? I had to hand in my driving licence and a £10.00 cheque back  in May. The driving licence was sent back to me in the post and start date for the request logged as June 2nd. How the hell could it then go missing?

The Director of Social Care has launched an investigation apparently. Almost hilarious as always, though of course it ain’t. He’s informed us of this investigation. Unlike the original investigation that sparked the subject access request. I’m baffled as to how this latest sight of hand example hasn’t pushed a few warning bells that maybe crapola practices are alive and kicking within SlovOCC. But nothing seems to do that.

"And bung a copy to the commissioners, NHS England, Sloven and the top brass of OCC..  The more the merrier in the circs. Cheers."

“And bung a copy to the commissioners, NHS England, Sloven and the top brass of OCC.. The more the merrier in the circs. Cheers.”

Grated finger tips and sick sifting

L1015039Forced back to the cardboard boxes of records/letters/reports stacked up in what was going to be LB’s bedroom this evening. I have to provide evidence to support my witness statement for a disciplinary council investigation. I gave the statement on Monday. Another annual leave day spent doing stuff so awful I’d rather grate my finger tips, sprinkle them with a mix of lemon juice and chilli, and sift through a vat of day old vomit separating out the chunks. But hey ho.

The road to accountability is a completely unnecessary and inhumane process when public bodies are involved.

The interview was thorough and searching. Deeply, deeply saddening and distressing. Re-living the horror of what happened [he died…???] but also reflecting on how the whole happening was simply a disaster waiting to happen. So many big and small craphole pieces in place.

Tonight the evidence. Grated finger tips and sick sifting again appealed but ain’t an option. Sadly. If we want any accountability for what happened, the catastrophic unfolding of something that turned out to be so bleedingly obvious has to be revisited. And then revisited. In heartbreaking and harrowing detail that will, eventually, become public.

I’m halfway through the task. After the way in which OCC responded to the ‘factual inaccuracies’ I raised [she said but we don’t believe her because it ain’t in our records…] I’ve developed a new system which involves screen grabbing relevant sections as well as referencing them. Creating a form of collage artwork. A word document of colour, shape and heartbreaking content. My word is clearly meaningless without ‘real time’ evidence. Southern Health NHS Foundation Trust* and OCC can record whatever they like, or choose not too, and it counts as ‘fact’. We have to show original workings where they exist. Deeply unfair and discriminatory but being discredited and discounted is now a familiar experience.

At least I can record this toxic process. With space here and on other online platforms, and the writing tools to make it visible. The attempts to discredit we’ve experienced so far are pretty shocking but LB and thousands of dudes like him are simply disregarded. No space, no platform, any tools to communicate ignored/crushed… lives extinguished or ruined through neglect, disregard and worse. Discounted in life and death. A sustained form of blatantly ignored eugenics. Acted out in full view.

Vat of vomit anyone?

*I’m reluctantly ditching ‘Sloven’ on this blog because they are so fucking focused on their reputation proper name checking is probably sensible.  Sigh. I had no idea this would be so blinking hard.

Bastards. 

 

FOI disclosure day

L1015020-2FOI disclosure day. Though it wasn’t really. Lengthy explanation from OCC about how exemptions under Section 40 and Section 36 were upheld, leaving me with a batchlet of process emails around the secret review. Ho hum.

The review was commissioned in July 2014 “in preparation for the independent investigation currently being commissioned so we can be better informed and contribute effectively.” Ah. This completely contradicts the letter from OCC legal services a month or so ago in which they argue the review was an internal jobby to look at OCC processes not a further attempt to look at the events leading up to LB’s death; “The original purpose of the review was caught up in the wider investigation […] With the announcement of an independent review it seemed sensible that this internal review stand as the Council’s input into the Verita Independent review”.

Mmm. Tasty, tasty behaviour from a public body that exists to provide services for, er, us. Nothing like transparency and candour down County Hall way.

Fast forward to this March and there were a flurry of emails between 13-15 March distributing the internal review to Sloven, Oxfordshire Clinical Commissioning Group, NHS England and the executive of OCC. Verita already had a copy.

I was sent a copy on March 30th. Two weeks later. First thing Monday morning. Without warning.

Wow.

All those [external] people read that shitty, damning ‘internal’ document before we even knew it existed… 

Wow.

 

Thanks (it was his tongue btw), Sara

We went on holiday last week. Starting from the battered position of getting the ‘updated’ version of the OCC ree (I refuse to call this a report as it bears no resemblance to anything I’d call a report) at 5pm, the day before we left. The issue of records cropped up again when we were away. Relating to whether LB bit his tongue or his lip in the unit.

This is a nonsensical question that underlines the importance of families documenting interactions with health and social care professionals meticulously. And even then, how their records are not really records.

In a complete panic, back in May 2013, I emailed the STATT manager to say that LB had had a seizure and accidentally typed lip instead of tongue. This typo has become part of the official record and has seeped into both the original Verita report (extract below) and the documents for the coroner.

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It was a typo. One I realised and corrected the following morning, first thing, in a follow up email to the manager who’d replied to say he had contacted the consultant.

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This email didn’t make it to the ‘official record’.

The lip/tongue question remains an issue. A confounder in getting accountability for LB’s death. [Yes, he died. He drowned. You fuckers].

This raises so many questions about what families can do to make sure their records, their version of events, are treated with respect and fully engaged with. To avoid being dismissed, misrepresented or ignored.

I typed lip instead of tongue that evening because I was so intensely distressed by the thought LB had an unwitnessed (unwitnessed??) seizure in that place. It was a simple typo.

Back from holiday. Sitting at the computer on a sunny Sunday afternoon to gather more evidence that fell outside the official Sloven/OCC record, I can’t help asking;

Really? Are you really making us go through these hoops?

Why?

Records and the internet web log

In a superlative moment of classiness, the OCC Director of Social Care sent me a red flagged email at 5pm this evening with a revised version of his shoddy little review. And responses to my concerns.

Yep. 5pm on a Friday evening. I hadn’t had a bad day up to then really. I had an emergency appointment at the dentist because my tooth cracked the other day. No big deal in the toxic world of trying to get accountability from public bodies. I then worked at home reading a thesis and catching up on other tasks. Halfway through reviewing a book chapter (deadline today/ironically about social media use) the email pinged in. End of that review. Instead the typical and now familiar deeply intense rage, frustration, bewilderment and distress.

LB died. He’s dead.

Why the fuck are we dealing with shite still?

[Brief background to the review; OCC commissioned an external consultant without telling us. They sent the review to Verita. Verita said we should see it. OCC emailed it without warning back in March. Under duress I identified the inaccuracies.]

The only good thing I can say about this latest documentation is that a potential PhD student now has more ‘riches’ to pore through and analyse in trying to understand the workings of public bodies under challenge.

The revisions to the original report? Extraordinary.

A few examples…; SR says x, y or z but “there is no record on file to this effect”. “There is no file record of that contact. SR advises that it took place.” “The Care Manager arranged a further visit on 31st August to meet CS, but the records indicate that this was cancelled by the family but SR has advised that she asked for the meeting to be rescheduled, which is not recorded on the file.” He even states there must have been two meetings on one day because I said the care manager wasn’t present and the record says she was.

What is actually happening here? Why do ‘records’ trump what happened? Apparently there is no ‘record’ that I waited in all day for a visit from the care manager who was a no show. Parents/families now responsible for making sure social services keep accurate records…

What makes these partial, half arsed and biased ‘records’ the ‘truth’?  I asked OCC to look at the different interpretations of one afternoon where the OCC ‘recorded’ version was sanitised off the planet. My blog presented an alternative description of an afternoon etched in my brain.

Completely misunderstanding my point, the response today was;

SR has recorded a different perspective on her internet web log. Having reflected on the implications of this comment, I have added a recommendation to my report that OCC provide guidelines to staff, service users and the public that postings on web based social media are not part of the case management or complaints and comments procedures. I do not consider it appropriate to comment on a social media posting.

There is a clear issue here that public bodies don’t get social media and see it as something threatening. Which it isn’t and shouldn’t be. [This was in evidence earlier today. Sloven while hosting a shindig for their learning disability/mental health staff started blocking campaigners on twitter when challenged about inaccuracies (or simply asked questions)].

I’m not claiming my version of what happened that afternoon is more ‘truthful’ or that local authorities/NHS Trusts should be looking for clues about their patient care on blogs or social media. I’m saying that ‘official records’ are not infallible. They are created by people. Like this blog is. Or any other account of something. It’s ludicrous, short sighted and problematic to only accept what is written in a particular space, by a particular ‘professional’, as ‘truth’. As the revisions of this craphole report demonstrate.

I suspect part of the (sustained/tooth shattering) battering we are getting from Sloven and OCC is due to our use of social media. The ‘records’ are under threat. Emails/tweets/posts contradict and challenge official versions. We’re shining an unwelcome light on stuff that has probably gone on in darkness for years. And doing things the ‘wrong way’.

You can’t shout down, bully, deny or try to ignore what is perfectly legitimate challenge to a system that is steeped in wrongness. A wrongness recognised by those beyond LB’s family or friends. To try to do so is to show contempt for democratic processes. For basic human rights.

The only way there will be any resolution – not for us because that clearly ain’t going to happen – is for NHS Trusts, local authorities, regulators, the Department of Health, government, etc, to embrace the use of social media. To engage with patients, people, constituents and use these interactions as a resource. Something valuable and insightful, not something to be feared. Something to build on, work together and thrash through challenges, obstacles, difficulties…

As much as OCC, Sloven and others may resist or dislike it, the future is the internet web log.

The Tale of Laughing Boy

 

This year #107days ended with the launch of The Tale of Laughing Boy produced by My Life My Choice and Oxford Digital Media with funding from Oxford City Council. Tommy, Tyrone and Shane from MLMC worked with Oxford Digital Media (who gave their time – blooming shedloads of it – for free). Saba Salman has written a review of the film here. Since the online launch there has been a remarkable response to the film.

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It’s being shared widely as it should be by a range of people and organisations; CQC, providers, commissioners, charities and other third sector organisations and people. Even Mencap.

A screening was held last Thursday evening at the Old Fire Station in Oxford to a full house. Including our MP, Andrew Smith, BBC Oxford news (tv and radio) and the Oxford Mail. Andrew Smith, love him, was all over Sloven’s potential ‘land grab‘. Absent were representatives from Oxford City Council, Oxfordshire County Council, Oxford Healthwatch and the Oxford Clinical Commissioning Group. Typically staunch supporters of the work of My Life My Choice.

I was chatting on Skype with a colleague yesterday. He’s arranging a screening of the film at his university over a lunchtime. He was shocked when I mentioned the Oxon screening boycott. He couldn’t understand how people (ordinary, decent people) can seemingly so easily ditch their humanity and act as state agents.

I gave him the briefest outline of the early, and as yet unpublished, findings from the Mazars death review.

He visibly froze.

Kerching and Katrina

I am absolutely delighted that we’re going to be forming a partnership between Southern Health and Ridgeway. I believe our combined effort is really going to provide superb world class services for people with a learning disability across the whole of the area we cover.

Katrina Percy, Sloven CEO, March 2012 

What Katrina Percy forgot to add to this ‘welcome to my empire’ speech was… and if we cock it up, we’ll flog the Slade House site and other Oxfordshire land for a massive profit and buggar off back down south.

Yep. For some reason [piss up/brewery/Oxfordshire County Council?] there was no penalty type clause in the contract awarding the tender to Sloven. Gifting them land and property worth millions. Rumour is the Slade House site will be used to develop student accommodation.

Astonishing.

Andrew Smith, our bloody brilliant MP, and our equally fab local BBC Oxford news team are all over this. As Andrew Smith said in an interview last week; “This is unacceptable to the public, unacceptable to LB’s family and unacceptable to me. I will fight it.” Good.

Sloven – any thought of providing ‘superb world class services’ for learning disabled people long gone – issued a statement saying ‘We are carefully considering our options. No decision has been made’. ££££££Kerching££££££££. The Department of Health issued a statement saying something like “er, none of our business, piss off and sort out your mess locally.” A teensy bit shortsighted really.

Hmmm.

If Sloven think they are going to profit from LB’s death and parasite this money out of the county, their reputation management indicators will be flashing London bus red for some time. As simple as. It’s just wrong.

Of course they may do the right thing without a fight. That would be priceless.

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LB’s buses at the end of yesterday

 

Didcot station and the heatwave

I spent quite a bit of time at Didcot station in the last couple of days. Heatwave, potential hazards (buckling lines) and the like. A minor rail travel meltdown. The Pumpkin fridge and air-con in Coach F on First Great Western succumbed to the great British bake off. This afternoon I was hanging out on platform 3 again with a colleague after interviewing a mother about her pregnancy/birth experiences in Somerset.

Thinking about LB.

I think about him all the time. He sort of fills every space, every crack in everyday life and more. I think about him at home and work. But these are punctuated thoughts. Open to distraction. Family, work, a meeting, an interview. A talk to prepare or article to review/write. These can interrupt the thinking. Sitting on a platform, with no train in sight, was clear space.

Just before the train arrived, a woman came and sat down next to us on the platform. I sort of recognised her, in a fuggy and heat ridden way. Any clarity beaten out of me by the day. It turned out she had taken part in my PhD research. She’d found out six months ago that ‘LB was your LB’ (different surnames) and wanted to get in touch. She didn’t know what to say (because there ain’t really an awful lot to say).

Her daughter has had a pretty shite time with serious unrecognised health issues in ‘independently supported’ living.

We had an odd/sad/funny exchange on the hot, slow journey back to Oxford reminiscing about those days. Days that were a mix of carefree, constraint and concern for our kids.

‘I don’t suppose you’ve still got that diary I wrote?’ she asked.

“Yeah, I’ll dig it out for you”, I said.

Ethics was less of a deal back then.

#107days again… Er, really?

Naive beyond naivety. We were pitched into a completely devastating, toxic, harrowing and obscene space/journey on July 4th 2013 without warning. In an instant. From pretty much nought to a billion with the opening (as kind and sensitive as you can possibly be in the circumstances) words of an A&E consultant. On that baking, baking hot July morning. The snuffing out of a young life and unleashing of horror, devastation, disbelief and pain that defies description.

From thinking about the prom on the bus to work to autopsies, coffins and cremation.

We had no idea then that two years later we’d be locked in a foul, stench ridden, rotten corner with both Sloven and Oxfordshire County Council (OCC) doing their best to extricate themselves from any responsibility for what happened. Sloven by withholding documents, pulling dirty stunts like arguing drowning is a natural way to die, sending bullying letters and consistent obstruction. OCC by conducting a secret and completely biased (non) investigation into what happened. We had no idea that the actions of both (public) bodies (and others who remain shadowy in the background through their non action) would actively add to and increase the intensity of pain and agony.

Bastards.

Naively and even despite the above, we thought that #107days this year (we never expected or wanted to have to revisit the almost spontaneous explosion of goodwill, celebration, solidarity, commitment, awesomeness and magic that unfolded last year) would incorporate the outcome of various ongoing reviews; General Medical Council, Verita and Mazars.

A nonsensical expectation.

Instead, we have no outcomes and an additional ‘thing’ to add to the wait list; the revised OCC ‘investigation’. [This is a ‘might as well wait for the fucking cows to come home’ item supposed to be finished in June.]

So what the fuck are we actually waiting for? And why?

What’s the big mystery?

LB was a fit and healthy young dude with a diagnosis of epilepsy. The STATT unit he was in was clearly crap. It was taken over by a “Trust” based 100 miles away 8 months before his death. OCC and the Oxfordshire Clinical Commissioning Group were apparently happy to shell out £3500 a week for his non care indefinitely. An independent report published 16 months ago established his death was preventable. The unit has since shut and a series of failed CQC inspections across the county have highlighted the maggoty state of provision in Sloven’s “Northern patch”.

As a vague aside, no one seems to be (publicly) going near the question of what happens to the prime chunk of land that the STATT unit was on. If it’s sold, who gets the readies? If the dosh goes to Sloven and into their southern based coffers where does that leave people/kids in Oxfordshire who need support? Ho hum. Awkward questions that won’t disappear but a brief glance at Sloven’s latest Board papers for the meeting tomorrow suggest that property sales form part of their ‘business’.

property disposal

Setting aside the monetary considerations which, along with reputation, seem to be the only thing Sloven and OCC respond to, I keep coming back to the question; what the fuck are we waiting for?

Dan Goodley and Rebecca Lawthom raised this question as they took the #JusticeforLB flag back to Glastonbury for a second year;

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Without answers, they repeated their remarkable commitment to sharing what happened to LB with Glastonbury revellers. They managed to share LB’s story, keep the flag flying high with no flagpole breakages and hook up with Rosie and Jack. Love em.

Legendary work.

Keeping the hope flickers well and truly fanned. With joyousness, humour, love and dedication. Maybe someone/organisation with any power/influence will step up too. And act. As we continually say, it ain’t rocket science.

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