Monthly Archives: May 2014

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.