LB’s death shone a spotlight on the inadequate provision for learning disabled people provided by the Sloves (and Oxon local authority). I don’t expect they’re out of the ordinary across NHS Trusts though some of their actions are breathtakingly shite. Once visible (well, once published in a CQC report a few months later), the Sloves were compelled to look lively. That LB’s death sparked no action indicates the level of problem we’re looking at here.

So what did they do? They flew in a trio of experts to examine their pathways and provision. KP, her merry women and man went on tour, meeting the Oxon Learning Disability Partnership Board and other people/organisations. A big, big new plan was developed, discussed at length in their board meeting/minutes. The modern way… In the meantime, they became subject to enforcement action by Monitor. Serious stuff. The march of change backed up by big guns.

Wow. A blast of fresh air through learning disability provision in Oxon. LB died but hey, other local dudes will be getting service with bells on. Person centred, buffed, polished, informed and thoughtful. New committees formed and a Quality Director post created.

Meanwhile, back at Slade House, the John Sharich unit was re inspected by the CQC. They couldn’t inspect STATT as that was conveniently closed. The inspectors found that a lack of therapeutic environment remained, staff were still in the office and a blanket ban on baths was in place. Yep, a ban on baths. Despite none of the remaining patients having any risk factors associated with bathing. And despite a patient staff ratio of pretty much 1:1.

A bathban?

The Sloven journey for the last 11 months has been largely one of performance, waste and prevarication. An exemplar in talking the talk to persuade the great and good they’re up to the task. Meanwhile on the ground, clearly a million miles from any understanding of person centredness or good provision, LB’s peers are being punished for his death with breathtaking disregard for their human rights.

This news caused disbelief and incredulity over on twitter. One person tweeted, if a patient choked to death in their care, would they implement a ban on eating? Sadly a young dude did die in circumstances a bit like this a year before LB. But because the Sloves have so far managed to keep a lid on the circumstances surrounding his death, nothing has changed.

Breathe easy dudes and families of Oxfordshire, eating ain’t banned yet.

I watched a set of podcast lectures the other weekend about research methods. This was a novel development. I was able to crack on with a bit of much needed clearing up/cleaning in the space close to the computer while learning some stuff. I could probably turn the sound up louder and apply this focus beyond this immediate area (a metre or so) but it was a good start.

I was also struck, from a teaching perspective, by the procrastination in several of the lectures. The “and I’ll come back to that..” refrain. Without ever doing so.

“Ooph”, I winced, shovelling dust mountains off paperwork dating back ten years. “Not good. You can’t push the tricky bits to the never never.” [Gulp]

STATT was an exemplar in procrastination. Week after week community team meeting minutes recorded what was going to happen. With no actual doing. And no one bothered to check that the proposed doings had been done. It was like small scale performance of hot air to the tune of £3500 a week per patient. Pretty spectacular really. Our dealings with the Sloves since include some cracking moments of procrastination. The bullshite detector must have a missing battery or summat.

When someone dies a preventable death in the NHS, one of the first things that should happen is the stamping out of procrastination (and prevarication). It’s inhumane and offensive. And is experienced as a type of ‘the dog ate my homework’ excuse to the shattering of lives. Allowing or enabling either of these two ‘Ps’ (and the ever present billy BS) is further evidence of glut, disregard, disrespect, indifference and an enormous finger at an agenda allegedly prioritising transparency and candour.

There should be a ‘procrastination police’ type person (the old caped crusader even) to stop faff, procrastination and prevarication on behalf of families.

A Barry will do. It really ain’t rocket science.

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.

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.

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.