For the nerdy, for learning and toast

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Been chewing over whether or not to share this chronology here. I recently received a copy of the “Chronology of Trust actions with the family from the time of Connor’s death to sharing of final investigation report with Connor’s mother” amongst a few documents as part of an Access to Records request. The Slovens circulated a snappy little version of our communications with them to key stakeholders. Oh my giddly gawd.

I have to warn that my revised version, with the gaps filled in, presents such a micro level of grubby detail it’s a visual version of nails screeching down a blackboard. So this is really only for the nerdy* and for feeding into learning how to communicate better with families when you’ve allowed your provision of healthcare to slip so far down into shitsville, a young man with epilepsy is left to drown in the bath. Within feet of four members of staff. In a specialist unit.

For those of you who choose not to read it, here’s a bit of Tori and Toast.

*Nerdy is good in my book.

Poohead and wnakers

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Yesterday John Williams adopted Day 57 of #107days and dedicated his comedy show, ‘My son’s not Rainman’, to LB. He was performing at the Kenton Theatre in Henley along with Dave Griffith, aka King Cnut. Dave in a bizarre coincidence given we’ve followed each other on twitter for a while, is actually Will and Owen’s uncle. Funny world. The show was a sell out.

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John (I think I can call him that now as we had a big old hug and he is like one of those people you feel like you’ve known your whole life) was hilarious. He captured the whole randomness of life with a dude like LB and his son, Fin with the funniest of funny anecdotes. Stories of crazy golf, blue tac and biting. A letter his son wrote him when he went away, signed ‘lost and lost of love’ with a matchstick drawing of the pair of them. A letter he later defaced adding Poohead and drawing a turd on his dad’s head. We laughed till we cried. What made the show so powerful was the deep love and affection that John openly demonstrated for Fin throughout. And what was even more blinking brilliant was how much the audience laughed, everyone getting a dose of a wonderful dad son relationship that is just a bit different.

John ended with a massive shout out for LB, #107days and played Divine Comedy/LB film on the big screen. More tears…

After Marcus Richardson’s debut as a comedy poet (very, very funny with moves that have no name), it was King Cnut’s turn with ‘C U in Court’. This is a hilarious story about ‘the little man’ taking on a giant corporation over the use of ‘CNUT (French Correction)’ on t-shirts. Dave’s strong sense of justice combined with remarkable determination and tenacity meant he not only refused to be bullied by the French Connection monster (who seem to have PR/Comms staff fresh from the Sloven School of Staff Training) but became an expert in trademark law and set about policing their design activities. Brilliantly funny and astonishing.

It was a right old belly laugh of an evening and seeing John at the end of the show, working his bollocks off selling LB’s postcards in the foyer was awesome. 58 days of something you couldn’t make up.

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Versions, power and duplicity

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Among the flimsy paperwork I was sent for my Access to Records request was a Sloven briefing to Monitor about LB. Before I have a bit of a chunter about this document, it’s worth having a speedy recap on a few points. We know LB shouldn’t have died. His death was preventable. We know the unit he was in (and other Oxfordshire provision run by the Slovens) was/is shite and this level of crapness was no real surprise to anyone involved (other than patients and their families neither of whom really count because of the old learning disability obliterator).

Over at Sloven Towers, KP and her crew are able to seemingly draw on unending resources to buy in whatever expertise they want to try and maintain the different, now flapping, bits of their reputation. There will be a bundle of Freedom of Information requests I’m sure around how much they’ve spent trying to scrabble out of the pit they themselves dug.

All funded by, er, taxpayers.

So, the Monitor briefing. Well it’s more of a version than a briefing really. A version that skips through a sunny and bee-buzzing orchard, plucking rosy red apples from the trees, carefully positioning the maggoty rotten ones beyond view. Bit like the chronology of communication with us the Sloves produced for their key stakeholders. A chronology so full of holes it’s (not) laughable. But these documents can be circulated without scrutiny (well, until someone in the know points out you can request them) behind closed doors. The Sloves free to construct a version of events which paints them as ‘doing right’ and me (because I’m always a random lone ranger in Slovenworld) as unreasonable and irrational. Because that’s how it works. The same lack of real scrutiny in overseeing their provision in Oxfordshire until LB’s death apparently extended to their actions since.

The Monitor version has a whole section on social media, some of which I tweeted yesterday. A core paragraph;

Sadly, since the publication of the independent report the Trust has been subject to trolling on Twitter, a number of staff have been directly targeted and have felt intimidated by the Twitter traffic, we are aware of at least one staff member’s account having been hacked and a bogus Trust Twitter account set up.

Eh? Really?? Trolled? Sadly? Wow. Hacked and intimidated? Breathtaking. Hacked and intimidated? Really? For the record, sadly doesn’t come near the preventable death of a completely vulnerable young man in ‘healthcare’ provision milked at a cost of £3500 per week. And doesn’t touch what we’ve experienced since.

The Sloves go on to inform Monitor that:

We should be clear that there is absolutely no evidence that Sara Ryan is personally responsible for this trolling, hacking or intimidation but there are clearly some people who wish to use this case inappropriately.

You are kidding me? This is a wind up, surely?  A briefing document to a government regulatory body containing such a snidey, spurious, pointless sentence. What sort of level are we operating at here? I have an image of the people of Monitor sitting around, puffing on pipes (dunno why) muttering ‘Ooof… Trolling eh? Nasty business.. I put my money on that bloody mother again. And the lead piping…No, no the candlestick. The candlestick!’

Do Monitor care about alleged ‘trolling’? Is it relevant in any way to what they do as an organisation? If there’s ‘absolutely no evidence’ I was responsible why bother to mention it? Other than to discredit?

Awful. And so wrong. For so many reasons.

Not least because it completely disregards the organic and transformative level of engagement that #justiceforLB/#107days reflects and has generated.  A drop of positivity to emerge through such a catastrophic and unimaginable happening. If I was in any way connected (through work) to such an awful event (that simply added to long known about shortcomings, failings and the complete shiteness around how a particular group of people are treated) I’d welcome the emergence of a movement that seemed to capture something fresh, different and open up different ways of engagement. Of making some sense of the incomprehensible.

The Sloven briefing/version was written a few days before the start of #107days. At a point at which they were clearly completely internally focused, denying LB any humanity and relentlessly working silly discrediting lines of action. Stuck in the groove of the last century.

Given that we’re now at the halfway mark of a campaign/movement that’s broken campaigning rules (by not having any) as well as illustrating the ‘power’ (not sure if we have any real power but hey ho, hopeful till proved otherwise), potentially democratising space, and inertia smashing of social media, maybe Sloven staff/directors (and other relevant organisations) could try take a moment and think beyond themselves and their reputation?

Maybe have a bit of think about how they would feel if LB if had been their child? Their brother, grandson, nephew, cousin or friend. Try and kick aside the stale and worn bolt holes of defence, discredit and denial as a default position. Who knows. Maybe this will encourage an authentic turn to openness and transparency?

Which may lead to something.

Postscript 1: Victoria Betton has written a thoughtful response to the trolling accusation here with sensible suggestions for better NHS engagement on social media.

Postscript 2: I can hear the reverberation of ‘Well she calls us Sloven on her blog and Twitter which is pretty rude/disrespectful…’ Yep. I do. Because, as I’ve described above, we don’t really have an awful lot of power here. Irreverence is something LB had in buckets and one of the (many) characteristics I really admired about him.

Postscript 3: I despise describing LB as a vulnerable young man. It’s something I fought against his entire life. Until the end. When he was completely vulnerable. And should have been properly looked after.

Postscript 4: I’ve now changed the last sentence of this post about five times because I don’t have a last sentence. Just throwaway words that don’t mean anything. Maybe we can have a pending end to the post. If anything actually happens.

Today, the tanker and other stuff

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ryan5-156 ryan5-155Today LB’s grave was looking beautiful in the spring sunshine howl, I pretty much finished my patch for the justice quilt (bit wonky but every stitch imbued with love and memories) and a couple more remarkable days were pledged on #107days. 107 days fit to bursting with complete wondrousness in so, so many ways. Action, in any shape or form. Big or small. Individual, collective. Just action.

Action.

Rumour is, we may be making some progress. The tanker (of some change) may be turning. Our bar is, as ever, in the realm of anything learning disability related, set to below zero. A shameful, shameful position of expecting nothing. But word is that relevant people may be listening. That what has become visible since and because of LB’s death is a little bit too much to sweep aside and ignore howl. Here’s hoping…

In the meantime, you can get involved in the campaign here. And our (completely voluntary) campaign manager, the indomitable George Julian is plotting to shave her head.

We need to keep that tanker turning.

Models of disability and ‘real’ epilepsy

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Having some serious ‘what’s the point of a lot of academic research (my own right up there with a few others) thoughts at the mo, particularly given the wealth of research around learning disability provision. We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK. Yes, there are pockets of good and brilliant stuff (anecdotally, largely where some cracking person or group of people have got together to just do something.) But overall, it’s pretty crap or worse.

Yesterday, this was tweeted by Chris Hatton…

costs

Whoa. Really? Really???

Half a £billion a year? For being warehoused, out of sight, on the edge of towns. Restrained, subject to abuse or other acts of violence and neglected.  Half a billion???

The Winterbourne Concordat (sigh) aimed to get people pretty much out of these hell holes by June 1st. The outrage generated by the original Panorama expose of abuse has clearly lost any welly. People have moved on, learning disability really ain’t sexy and no one with any influence is prepared to do anything. (I’m losing count of the people who mention how well we’ve done to get the publicity/momentum we have on #107days… It’s like trying to crawl out of a 30 metre deep mud pit with some cocktail sticks and a cotton reel).

Today Rich and I had a ten minute revisiting what happened to LB (various versions of this happen several or more times a day… typically underpinned by despair, disbelief, rage, intense sadness and inevitably tears). Today we focused on the consultants involved who, in their wisdom, decided to ignore, pretend or insist that LB didn’t have ‘real’ epilepsy and wasn’t having increasing seizure activity.

(This reminds me of a conversation with someone who said (after LB’s death) that she worked with children with epilepsy who had “proper seizures”.) Eh? LB was ‘medically’, ‘officially’, and about as blinking properly as you can be, diagnosed with epilepsy. (Eventually). Numerous people, us, his teachers, paramedics and A&E staff witnessed him having seizures. I’ve never seen anyone having a seizure before and I saw him having various types of seizure include tonic clonic which really is in your face seizure activity. He had epilepsy.

His sensitivity to changing medication was also known and recorded. The consultants at the unit were told that he was having increasing seizure activity, by people who knew him better than anyone. And yet they sat in a meeting two weeks before he drowned in the bath and decided he wasn’t.

In a unit costing around £3500 a week.

In some ways the cost is completely irrelevant. We’re talking about the life of a young dude who had only just nudged into ‘adulthood’. But at the same time, the enormous cost of these places contrasted to what’s actually delivered speaks volumes about the ambivalence and (maybe fear?) attached to people like LB. The cost of keeping em penned away from the rest of us is paid. Seemingly indefinitely. Seemingly without question. Even when the extent of the atrocities that happen in these spaces are known about.

And any aspect of their lives, including clear, pretty straightforward medical issues can be ignored. The ‘learning disability’ trumps all.

The disability (studies) movement in the UK has been caught in circular discussions/debates/disagreements and revisiting distinctions between social and medical models of disability for years now. Pretty tedious and dusty really. But what’s astonishing, and illuminating, is that the medical profession denied LB the right to be epileptic. They denied him his medical label.

They denied him his right to be epileptic. Because they couldn’t see beyond his ‘difference’. And this, ultimately, denied him his right to life.

Anyone got a copy of the Hippocratic Oath handy?

 

This woman’s work

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A letter from Katrina Percy was included in the flimsy bundle of documentation we received in response to my Access to Records request. This letter passed me by at the time. A cracking version of a ‘bury bad news day’ offering really. It was sent by email the same day the Verita report was published. That awful day back in February when we, alongside a great many people on social media, waited for hours for the report into LB’s death to be eventually published online around 6pm.

Reading the letter now, a couple of months on… Well.. it’s such a distressing example of something I’ve almost no words for. To write such a letter at the same time as the publication of the report which clearly states that LB’s death was preventable, without reference to this report, underlines the complete disconnect between KP and her public handwringing, hounding of us to meet with her.

The letter is headed:

“Health Records of the late Connor Sparrowhawk”

Wow. Wow.

Wow.

Fuck me.

Howl. 

Howl…..

You really, really, REALLY, don’t need to refer to the ‘late Connor Sparrowhawk‘. He was our beloved son. A dude I gave birth to, cuddled, kissed, comforted, fed, bathed, cared for when he was ill, admired, encouraged, reassured (constantly), tried to help learn stuff, learned from, laughed with, advocated and fought for, hung out with and blinking loved more than life itself.

The late Connor Sparrowhawk. What stupid, careless, thoughtless and unnecessary phrasing. I spend pretty much every waking second, minute, hour thinking about and howling (inside or out) that our dude is dead. And thinking about how he died through the unspeakably poor and, in our opinion, criminally negligent actions of Sloven fucking shite health and associate organisations.

The content of the letter is about two further examples of appalling practice by the Sloves. First sending LB a letter after his death about the brilliant care he can expect from the Sloves and second, the failure of the Trust to send a full set of documents to Verita until two days before the final report into his death was due. Just read this paragraph again. And again. And again.

Examples of such shiteness which, together with the evidence from the Verita report and various CQC failed inspections, make me wonder why we’re still even discussing this bunch of complete muppets. As I’ve asked before, without answer, what needs to happen before someone wades in to say ‘Er, that’s probably enough now’… I can only think that the appalling examples of Sloven are replicated across other Trusts and everyone is hunkering down thinking that ‘Mmm, pretty much that’s what we do too…’

Katrina Percy litters the letter with her now customary crapshiteness. Words that ping off any available surface failing to hit a meaningful note. She’s been at the helm of a Trust that’s crushed our lives (and the lives of others) in a way that is sort of acknowledged by the CQC and Monitor, but she still buffs her awards and pops up on local news to spout bullshite.

Her words in this letter make my eyes feel sick; sorry, terrible mistake, I can only imagine the distress this must have caused you, terrible mistake, deeply regret, gravely sorry for the error, unacceptable, incredibly sorry, etc, etc etc. She spews out bullshite to order but fails to join the dots to think ‘Er, oopsy, the independent investigation into this young man’s death found his death was preventable. The report’s being published today (eventually) I should probably write (or sign) my letter with that in mind’.

Nah. There’s no real joining of dots with KP because basically she couldn’t give a shit. She has no answers to the real questions (as evidenced at her recent ‘appearance’ at the Oxfordshire Partnership Board).

She promises to “update you as soon as this is completed” [an immediate *cough cough* investigation into the sending of the rogue letter]. I’m not sure how they can possible provide any patient care they are so busy investigating their own shite practice, but needless to say, we ain’t heard squit about this one. Or the one into why we have a separate set of minutes to the Sloves. It’s just toss wank really. All talk and no action.

I’ve spent two evenings this weekend filling in the gaps on a chronology of interactions with us that Sloven Health sent out to stakeholders at some point in the past few months. A chronology that fed into one snarky phone conversation I had with the Director of Social Services (Oxfordshire) and who knows what thoughts of other stakeholders it was circulated to. This chronology of ‘Trust actions with the family from Connor’s death to sharing of the final investigation report with Connor’s mother‘ is an example of airbrush extraordinaire. It erases so many twists and turns that have caused us such intense distress. Unforgivable. I’ve felt almost winded going back through the old emails and letters around what’s happened since LB died to produce an accurate version of this document.

The sadness, indescribable pain and rage that we’re forced into this space. That I’m sitting at 11pm on bank holiday monday reading through and identifying the careless, shite and continuing rubbish actions by Sloven. Because we need to.

Because no one with any power is doing anything to stop it. Because 10 months on there is no accountability at any level for what happened to our son. Who was in the care of the state and drowned in the bath before he set off for a trip to the Oxford Bus Company.

I really don’t get it.

 

Stuff, the prom and more stuff

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This is a photo of LB taken 2 days into the last year of his life. His school prom. July 6th 2012. Owen went with him that year. When I found this photo earlier, Tom was delighted. We should get it printed and framed, he enthused. Such a brilliant photo. It is (though this is a screen grab, I can’t find the original right now because of some horrible hiccup with my groaning Mac.) As Tom said, he looks like the guy who the party is organised around. Too blinking cool for school (my cheesy words, not Tom’s). The world at his feet…

LB prom

That wasn’t a celebratory school prom because LB’s school mate was an inpatient in a children’s unit in Norwich at the time. He’d been there for a few months, had been drugged to the eyeballs and (subsequently) subject to abuse/restraint. He came to the prom with his sister and his mum on a weekend visit home.  We (#ragingmothers) kept our heads down in a side room, trying not to visibly cry when we saw how he’d been affected by his experience/medication.

At the time, LB was, as he looks here, a young dude at the start of his adult life. He occupied a loved and adored place in his extended family, rocked school (and the prom) and was (recognising the constraints around not being able to leave home on his own, cross the road, count to 10 or understand the implications of certain actions) a chilled dude.

Less than a year later he was dead. Shockingly. Preventably. And so far without anyone held accountable. (Or any real change).

LB’s mate is currently experiencing some difficulties having had a good year or so at home with good support. There’s now no in-county provision now STATT has shut. A horrible, sad and howling circularity to LB and his mate’s actual experiences and the government policies including Norman Lamb’s handwringing about abject failure and lack of change, Winterbourne View concordat tentacles and what any of this means to the providers in real terms.

There are some serious questions to be asked about the current closure of STATT and the obligations of the commissioners and local authority to provide effective and good services for people within the county. Basically, if they were able to provide shite provision at extortionate cost in county for however many years, why can’t they provide something good now they know the problems that exist? It really ain’t rocket science.

Or it shouldn’t be dressed up to be.

Can’t do Candour and the Sloven Two

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I received a big package yesterday from the Sloves. The spoils of my Access to Records request. Blimey, I thought. This will take a bit of a read through. As it turned out, it took all of five minutes. The bulk was a copy of the Verita report and one set of board papers (stretching to the typical 200 page length). That left very little.

Now I requested copies of all documentation (reports, letters, emails, etc) in which I was mentioned dating back to when LB went into the unit, including exchanges with other organisations like NHS England, the CQC, Monitor and so on. And following the new NHS emphasis on candour (that is, open, honest and frank engagement), I’d expect a thorough set of documentation.  I’ve had several Sloven emails mentioning me that have been forwarded to me over the past ten months.

Two emails were included. Two.  One the Sloves sent to two people separately, and a response to that email from NHS England.

So more billy bullshite from the now legendary slovenly Trust. Notwithstanding the emails I’d already been forwarded (not included in the Sloven Two), an organisation that’s actively seeking professional advice from different areas (including social media) to manage the trickiness surrounding what’s happened (an ‘unprecedented set of circumstances for the Trust’ according to the Chairman), would clearly have more than two emails mentioning me.

One of the other bits included in the package was the Briefing Note to Monitor. This 3.5 side document includes four separate mentions about wanting to meet with me.

  • To date Ms Ryan has declined all invitations to meet with the Trust Chief Executive
  • It has been suggested that the Trust is somehow “hiding” from the media on this matter. The truth is very different. The Trust has responded positively to media requests and more importantly it remains keen to engage properly with Connor’s mother, Sara Ryan, but to date she has declined to meet with the Trust.
  • For these reasons we should not respond through social media channels but we should continue to seek to engage with Sara Ryan in other ways. We owe it to her to understand that she is currently going through a grieving process and while she may not wish to meet with the Trust now, we still have a duty to engage with her in the future.
  • We are pleased that Ms Ryan is meeting with David Nicholson and Jane Cummings – and subject to their agreement – we would invite NHS England to use its best endeavours to persuade Sara Ryan to meet with the Trust.”

This is another example of the completely misplaced focus of Sloven actions, a misplaced focus that filtered down and ultimately led to LB’s death. Instead of concentrating on the care provided and the ship they are running, they seem determined to hound me (and encourage others to hound me) into meeting with them. Why?

And if you’re reading this, KP and team, can you bung the missing documentation my way? Or have I got to make a second ‘official’ request?

Slovenstuff

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Blimey. More shite from the Sloves. My big sis, Agent T, (yep, we’re all discovering skills and talents we never imagined) received a letter from the Sloves today, addressed to her but responding to the grievance of another patient. This is reminiscent of the set of Community Team Meeting minutes, covering all five patients, I received by email when LB was in the unit…

…what-effers. Yadiyawnsville. You tedious, professional (in development), Sloven basher you… 

Yep. I’m happy to assume the label of professional Sloven basher. Because they need bashing. Like other Trusts, I’m sure. (And given Norman Lamb’s completely frank account of the ‘abject failure’ of the Winterbourne View Joint (non) Improvement Plan* yesterday, I’m not sure what other options we have really).

Setting aside LB’s death (through complete indifference and disregard), we’ve had to sit through the Sloven Medical Director talk on local TV news about how the Sloves want to help us (me) move on. Move on. I don’t know how anyone can tell another person they need to ‘move on’ when someone they love beyond life itself, dies. Spoken by a representative of the organisation responsible for his death.

We’ve also listened to Katrina Percy, Chief Exec, talk bullshit about how this ‘isn’t about neglect’. I don’t want to meet KP but I’d like someone to ask her how LB drowning in the bath isn’t about neglect. About how the failings identified at STATT by the CQC, including a lack of therapeutic environment, aren’t about neglect. How ignoring staff concerns about an environment not fit for purpose at Evenlode isn’t about neglect. Etc, etc, etc. And relentless etc.

At the same time, despite (recent) assurances we’ll be kept informed of developments within Sloven Towers around the agonisingly slow process of doing anything in response to LB’s death, we know squit diddly. Agent T knows more about Mrs A’s complaint about her ******* than we know about any development in accountability for what happened to LB.

Then there’s this latest delight. An excel sheet emerging through a Freedom of Information request for all Sloven serious incidents by someone. I’ll work out how to post the full link tomorrow. In relation to LB’s death it states:

Senior management and Divisional Director informed. Police notified and attended, stated that the death appears not to be suspicious. Family notified. Parent has an academic interest in LD services and is known to the Trust – Comms made aware of potential media interest. Safeguarding notified. Incident form and IMA completed. CQC informed.

If you want to know why I’m raging and ranting about Slovenshite, it’s because even at the moment LB died (he died), their focus was on reputation. And has remained so.

* Worth flagging up here that #107days has no budget, no funding and is run solely on goodwill. An exceptional, unique celebration/critique of all stuff learning disability and broader. For free.

Everyday life

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The fight for justice for LB is consuming. In a good way for me as it distracts from the darkest of dark thoughts. From pain I can’t go near. At the same time, there are everyday things that need to be done. Outside of emails, developments, campaign developments, bombshells, twists, turns, obstacles and the now familiar billy bullshite to deflect and challenge.

Daily life. Daily life that, for fifteen or so years, consisted of a variable wait every morning for ‘transport’ to pitch up and take LB to school. A wait in which Chunky Stan and Bess kept LB company. Chunky Stan is now blind in both eyes. A development that would have floored us a bit a year ago. When it happened, a few weeks ago, we checked tail wagging capacity, his general demeanour and moved on. He’s a hug/cuddle/sleep kind of dog dude. None of which are affected by a lack of sight. The vet was impressed by his apparently instant adaptation to a non seeing world. A straightforward shift to a different way of being.

What’s missing is LB’s forensic focus and commentary on this development. His concern and desire to repeatedly focus on this change. He’d want reassurance that Stan can’t see any more and to understand why the vet couldn’t stop this happening. He’d probably draw in a few of his favourite characters/people to (repeatedly) comment on Stan’s new situation. Vince from the Mighty Boosh, Smithy, Dirty Harry and the Chief Constable of the Metropolitan Police.

We’ve sort of incorporated Chunky Stan’s sight loss into our everyday lives without much comment. At the same time, there’s a silence that’s cavernous.

With an echo of ‘Is Stan fat Mum?’…

 

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