Another big fat CQC fail

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I was astonished to get a call from BBC Radio Oxford (love em) yesterday about the new failed CQC inspection at Slade House. Eh? I said. A what? Slade House?

Yep. Turns out Slade House 2, which has six patients, failed on management/leadership and staffing. There was no registered manager and no nursing staff available (or even on site) overnight despite two patients with complex health care needs (which, er, don’t stop when darkness falls). Slade House 2 Nah. A joke. Surely. I thought. A unit, a stones throw from where LB died, in which patients lives are endangered by inadequate staffing levels? And failing leadership/management? (Though clearly superhuman efforts on the part of some frontline staff). That can’t possibly be. Each patient is funded at a cost of around £3500/£4000 a week. Not providing nursing staff overnight is simply obscene.

[Not just on the part of Sloven but also the part of the commissioners (Oxon CCG and the Oxon County Council) who are apparently content to pay enormous sums of money for crap all. Not only consigning people to lives devoid of an imagined future but also leaving them in spaces of  risk and danger. Can you imagine? Can you begin to imagine what this must be like to experience? No one comes out of this with sniff of integrity or decency.]

I was genuinely bewildered. How many CQC fails are the Slovens trying to chalk up in the ‘north of their patch’? How low can you go? How crap can you actually be while your Chief Exec tweets bland and empty nonsense about ‘leadership’?

Well, that leads us back to the big old million dollar (sorry) question really. Why did the Sloves want to take over the Ridgeway Partnership back in the day? Mmm. Worth a little bit of back to the future stuff. Back to early 2012… and a delvelet back to the heady days of the Ridgeway Roadshow….

[I feel chilled thinking that I could have easily driven past this meeting, a short distance from home.. without sniff of what was to happen and our dealings with this bunch].

Take it away Katrina Percy, Sloven CEO. Roadshow Rodeo Extraordinaire. Why do you want to take over the Ridgeway?

The first big thing for us is to create a big voice for learning disabled people..

Eh? A big voice? Wow. Just wow. How the hell did you try to do this? By allowing the Oxon patch of your provision to sink into such malaise drenched disarray that LB died [he died?] and the CQC failed inspection after inspection after inspection?

Sadly there are even more billy bullshit arguments from 2012: Sloven 10 Moving quickly on – from a set of such meaningless statements I want to stab myself in the eye with a sharp stick coated in scotch bonnet chillis – we’re left, quite simply, with not much more than the £8 million reserve and good old Chunky Poundland. Mmm. Awkward. So blinking awkward and wrong.

If Sloven lose the contract in Oxfordshire (which lets face it, ain’t looking unlikely given their track record of such consistently abject shite) they can hypothetically/ allegedly withdraw to Sloven Towers, leaving their ‘patch in the north’ without a backwards glance, clutching a full to bursting bag of Oxon designated bullion.

To borrow from the legendary Ron Burgundy. As ever. Stay classy Sloven. And next time you want to ‘create a big voice for learning disabled people’, park it eh?

The night before Christmas…

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Delay. The last 20 months or so have been characterised by delay. In July 2014 I wrote this about Sloven delay. Last summer. A year after LB’s death.

Delay is typically a negative experience. Often frustrating and stressful to endure. In many ways it involves being forced into a space that anthropologists call liminal. Neither something nor another. No longer here but no longer there. It involves occupying a sort of hinterland of nothingness, caught between what was and what may become. Even when there’s excitement attached to delay (birth maybe) there’s still an urge and urgency to get there. Or get out of the uncertain space.

From the moment LB died we were flung into a truly foul liminal space seemingly guarded and controlled by Sloven Health and the Bevan Brittans (their legal hench team). And, through a lack of action, NHS England, the CQC, Monitor, Department of Health and pretty much anyone else who may lay claim to any sniff of power to do anything to stop em. Even an independent report, clearly stating that LB’s death was preventable and the outcome of utterly shite practice, published in February 2014, has led to no outcome. Nearly 12 months on. [Howl].

Our beautiful son drowned in an NHS bath, the facts are known and nothing has happened. How can this possibly be? Can you begin to imagine how this feels?

Delay is clearly a key Sloven tactic and I can see why. It’s a form of torture to experience. And the Slevan B’s use it relentlessly, remorselessly and effectively. I won’t rehash the myriad examples here  – these pages are weighted with em – though I gather that the second Verita investigation into the wider issues surrounding LB’s death is in the process of, er, being delayed by Sloven practice. And I don’t suppose the police are holding their breath to receive documentation they’ve requested as part of their on going investigation into LB’s death in the near future.

So yep. We’re consigned to a hellhole space of continually waiting for some two bit, crappy NHS Foundation Trust who couldn’t be arsed to check if their provision in the pesky ‘north of their patch’ was good enough quality after they allowed a young laddy to drown in the bath in one of their units, and then were indignant to be publicly chastised by failing a series of CQC inspections laying bare their crapness. Behind the scenes documents (from FOI requests) are almost hilarious around this*. The Slovens (including Simon Waugh, a Board Chair who should really be removed from post after embarrassing demonstrations of ignorance of foul Sloven practice) attended one particular meeting with Oxfordshire County Council and the Oxon CCG last year which was almost comedic in their protestations/irritation around criticism of their provision. Indignant? When the CQC revealed a Fawlty Towers type level of operation.

But of course it ain’t funny. At all.

Anyway, readers may not be surprised to hear that despite an unrivalled record in delaying all and any action, Sloven and the Bevan B’s managed to call our solicitor on December 23rd. Eh? No way?? Yep. When a lot of the country were already on their crimmy break, this bunch of complete non deliverers picked up the phone at the last possible moment before Christmas.To deliver non urgent information we didn’t need or require but which fitted their strategic and calculated approach to this process*.

A cynical, nasty, deliberate and calculated action. Designed for maximum impact and pain. (More than happy to be put straight on this, if anyone has any alternative explanation for such a bizarrely timed action). Christmas is the time of pain for any family who have experienced a bereavement and they certainly managed to put the boot in brilliantly. But Sloven certainly play the timely card when they choose (like producing a briefing on my blog less than 24 hours after LB’s death). Simply cruel. And inhumane.

Now if anyone can let us know how this bunch of fuckers can really be part of the National Health Service, please crack on.

Cheers.

*We only delay (haha) publishing some stuff/detail because we have to be careful/wait for advice but we will make sure that the entire story is published in time.

A letter to the Ministry of Justice

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Dear Ministry of Justice,

I’m writing because I’m pretty concerned about this statement you issued to BBC Radio Oxford a couple of weeks ago when asked why there was no legal aid for families to cover representation at inquests:

An inquest is aimed at helping families find out the circumstances behind the death of their loved one. Lawyers are not usually required as the hearings are specifically designed so people without legal knowledge can easily participate and understand what is happening.The coroner is there to investigate the death and can put questions on behalf of the family during proceedings.

This has a touch of the In the Night Garden about it. Naive, meaningless fluff. You present a version of the inquest coated with parma violets, butterscotch and cream soda. Devoid of context. You suggest that families put their trust in the coroner. Yes. Maybe. But they should also be aware that other interested parties (such as the NHS, the prison service, police, local authority) may well turn up mob handed with barristers and the like. Determined to close down questions and limit the investigatory process.

And it ain’t just about what happens at ‘the inquest’. The inquest is a process not an event that happens within a set space at a particular time, as I’m sure you know. It’s a process that involves evidence gathering and submissions. Without legal representation, how can families be sure that the questions they want answered are going to be asked? I ain’t being funny, but coroners are only human and can’t go through the mountains of paperwork associated with a particular death in the level of detail necessary. And a family who are experiencing the gut wrenching and devastating despair associated with bereavement aren’t best placed to (and shouldn’t have to) trawl through records and documents.

If, as you also suggest, the inquest is inquisitorial and not adversarial, why have Sloven Health been arguing for the narrowing of our son’s inquest to one with no jury and no Article 2 engagement? In your sunshine version surely the Slovens would be there cheering on in the sidelines for an inquest best placed to answer questions? With openness, candour and transparency. Not fighting the toss on these points. With spurious, insensitive and offensive arguments that include death by drowning is neither unnatural or non-violent.

Their choice of barrister, Gerard Boyle, also speaks to a fairly weighty adversarial inclination:
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Gerry is in huge demand by the police and medical defence organisations to appear at Article 2 inquests? In huge demand?? How does this fit with your bland statement that families need no legal representation? It makes no sense at all. You must be completely distanced from the reality of the process, or worse.

I don’t know how to convey to you how we felt on the morning of LB’s pre-inquest review meeting. Back in November. When, three hours before the meeting, we found out who was representing the Trust. Such a blatant sign of their determination to fight. To fight about the circumstances of the death of our son they’d previously accepted was preventable. I really don’t know how an NHS Trust can possibly defend the death of a patient with epilepsy in the bath but that’s clearly not stopping them. I’m just relieved we have a legal team that shine a fierce light on human rights issues. A team drenched in integrity. And no whiff of parma violet pong.

Advising families they don’t need legal representation at inquests is simply wrong. Each situation is different. And clearly in some contexts legal representation is a necessity. I can’t imagine what it’s like to end up with an unsatisfactory inquest outcome. Other than making the worst thing you could ever imagine so much worse. This is unforgivable. And who funds this representation needs examination and reform. It isn’t fair that families have to pay.

It strikes me it might be helpful to send a few of your bods out to attend some inquests involving deaths in NHS Trusts. To get an idea of how it works in practice. Our next pre-inquest review meeting is on January 13th in Oxford if that’s any help.

Yours,

Sara

Those blinking ‘models of disability’ again

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I was going to do some work today. I’m on leave till Jan 5th but have a chunklet of work to catch up with. This is something I didn’t really have before. Not because I’m great but because I just did my work. More of an obedience type thing really. These days I have a hell of lot of other stuff to engage/deal with. On top of ‘work’. Another consequence. Another thing on the pile of ‘now life is like this’.

But I didn’t get round to working. I stayed in bed for ages, got up and just didn’t want to. Christmas was a pretty agonising experience. And I felt knackered. This evening I caught up with some reading. Recent disability related articles. This was a bit of a treat really. Some right old tasty morsels. Though a lot of returning to the distinction between medical/social models of disability. [Medical model: disability is an individual, tragic thing to be cured, social model: it’s to do with the organisation/structure of society rather than an individual problem].

I got to thinking about the Verita investigation into LB’s death. This (excellent) report was kind of something and then, in many ways, nothing. It clearly stated that LB’s death was preventable [howl] and carefully laid out the reasons why. But nothing has actually happened as an outcome. And the micro details remain largely unremarked upon.

Ironically, having spent most of my postgraduate learning immersed in disability studies, what happened to LB, and what is detailed in this report, kind of turns the medical/social distinction upside down. The health professionals involved collectively denied that LB was having seizures. Despite his diagnosis of epilepsy and me stating that he was having increasing seizure activity. They kicked out the individual impairment argument.

Why? Why would you do that?

  1. They were simply crap?
  2. They couldn’t give a shit?
  3. They were arrogant enough to make pronouncements based on, er, fuck all?

I don’t know (though I suspect it could have been a combination of the three).

I fail to understand how anyone with (any) medical training, would argue that someone with a history of epilepsy (hard won but ‘granted’ eventually) was not experiencing seizures. Why would you? For what reason? For what outcome?

He died.

Peace, doves and pigeons, again

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Justicequilt-2

A few reflections as 2014 draws to a close. The #justiceforLB campaign continues to grow. We have collectively generated some noise, discomfort and disquiet around the provision of services for learning disabled people, as well as encouraging joyful contributions, actions and activities from a diverse group of individuals, families and organisations. Heartwarming doesn’t begin to capture the experience of #107days of action and it remains thrilling to look back at those months and re-absorb the enormity of what people did. Seriously. Just legendary commitment and spontaneity.

I won’t rehash the things we have managed to achieve here as they are detailed on these pages and over at #107days, theJusticeforLB advent calendar and LBBill pages but it has been remarkable. (I get despondent about the lack of change but am reminded by Rich regularly that change takes time and we’re taking on an area which has been historically, socially and politically consistently shat upon.) So yeah, we’ve done good.

In contrast to the joy and celebration, Sloven and their merry band of solicitors, Bevan Brittan, continue to occupy the dark side. A (publicly funded) festering, stench ridden space in which they hatch nasty little plans that appear to be designed to try and crush us. Drawing on deceit, delay, non disclosure and offensive arguments. (It could be so, so different…)

The then head of NHS England, David Nicholson (love him) said to us back in March that Sloven would be advised not to contest the inquest. I mean leaving a young dude with known increasing seizure activity to bath without supervision in hospital is so off the scale of wrong I still can’t comprehend it. But nah. Sloven and the BB’s (or the Slevan B’s) submission to the coroner a few weeks ago included the argument that LB shouldn’t have a jury inquest because drowning in the bath is natural and non violent. Not only is this argument beyond distressing but c’mon weasels, you can’t possibly publicly accept that LB’s death was preventable and then argue that it was natural. Why? Just why?

Anyway, leaving that miserable happening on the pile of numerous other Sloven related miserable happenings, I’ve been thinking quite a lot about the campaign recently. Partly because of the #hairhack workshop George Julian and I did in Liverpool a few weeks ago. We tracked back through old emails to work out how the campaign got off the ground and had a right old chuckle at the ad hoc, almost random way things unfolded and developed. But underpinning this chaos were some core ingredients that may be necessary for a cracking social media campaign: commitment, energy, passion, creativity, humour, a range of varied skills to draw upon/crowd source, cheek, fearlessness, and no vested interests.

This list is up for discussion but I can’t help thinking the latter is possibly key. And what stymies the chance for actual change too often. Once you’re sucked into, or part of the system, it’s game over really. I can imagine that we’ve been a real irritant to various people/organisations over the past year. Pretty irrepressible, annoyingly and relentlessly buoyant in the face of some shite knocks (and I ain’t talking about LB’s death here), continually shining a light at little known practices, structures and processes, and not for buying off, distracting or deflecting.

And that brings me back to George Julian. While the campaign is and always has been a collective endeavour, George’s involvement deserves particular recognition here.

After a bizarre, work related, unremarked upon twitter thing about five years ago, George and I hooked up on twitter after LB died. And she became the central force in the campaign. I can’t (and almost don’t want to) imagine how many hours she has devoted to campaign activities from various parts of the world, with dodgy internet connections or exhaustion creating time differences. She has been consistently encouraging, thoughtful, creative, organising, planning and chivvying. With cheerfulness, enthusiasm and sensitivity. George has a legendary capacity to both deliver and keep things moving, even in pretty intense situations. She has added a level of sense checking, realism and balance to the campaign (while at no point suggesting a toning down of howling, desperate rage/swearing). As Mark Sherry commented on facebook yesterday; ‘I’m so impressed by her kindness, solidarity, principles and commitment.’

This, together with a cheerful readiness to break rules where necessary, make her the ideal type informal, radical, campaign manager. And she does it all, as the campaign has been from the start, for free.

So here’s to George Julian (sorry, you will always be George Julian in our gaff). And here’s to a new year. To changing the law and challenging the complete shiteness that continues to coat so many lives. And to getting justice for our beautiful dude who was let down in such a horrific and catastrophic way.

I took my camera into town today to snap a pic for this post. Pigeons featured again. And more guerilla knitting…

Patterns. There are always patterns. 

Justicequilt

‘Calling on’ and Calderstones

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Todays #justiceforLB advent dedicated to older parents got me thinking. Why don’t the main charities involved in the work around closing ATUs sign up to a ‘ditch the bullshit’ model?  The Winterbourne Concordat in its various guises achieved nothing. Stephen Bubb and his brekkie chums achieved nothing. This week yet another CQC inspection found brutal and inhumane practices at Calderstones NHS Foundation Trust. [Sharp tweeters picked up instantly that Calderstones actually bid for the Ridgeway but were pipped at the post by Sloven, both miles from Oxford…] 

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That this latest CQC report barely reached the British media is no surprise. But it did generate a Guardian piece from the holders of learning disability wellbeing in the UK; Mencap and the Challenging Behaviour Foundation. Now I have no doubt that both organisations provide invaluable services/support for families/learning disabled people but I increasingly think the bland and repetitive statements that they trot out, relating to Winterbourne type stuff, do worse than achieve nothing (I’ve added a list of selected lowlights at the end of this post). 

[Oh my fucking gawd.. what is she doing in the Crimmy break criticising Mencap/CBF???

Bear with me. These organisations shouldn’t be above challenge and should really encourage it…]

I have three particular issues with their latest missive which characterise their typical offerings.

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1. The positioning of these organisations as having some particular expertise/knowledge that no one else/organisation has. This is nonsense and I don’t think charities should big themselves up.

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2. The framing of this latest travesty as a ‘sharp reminder’. No ‘sharp reminder’ can possibly be necessary given the list of atrocities that have occurred and to suggest it is, kind of hints that some question remains about this.

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3. Meaningless, throwaway statements.  Most people have probably never given this a thought. Many are probably unaware that such barbaric provision exists in this country. And I’m sure many couldn’t give a stuff. And it must be that many of those involved in current provision (either providing the care or commissioning it) think people are receiving ‘good care and support’ (for them).

Given the high profile of M/CBF, and the almost impossibility of getting any coverage of learning disability related issues in the national media, wasting opportunities to raise awareness about the latest shite exposed with such nothingness is off the scale of unacceptable. There is a consistent lack of understanding, information and making connections in M/CBF missives in this area that means they completely fail to pack a punch (or do anything really). Dunno why, given the resources they have to play with.

It wouldn’t have taken much, for example, to go back and see that Calderstones was actually under a Monitor enforcement notice after abuse was uncovered in 2013. The Trust was forced to take action and had a management change in December 2013. This makes the findings in this latest CQC report (the inspection was conducted this summer) even more horrific. And makes the bland engagement and nonsense knowledge claims by the key charities in this area even more unpalatable.

So how about ditching the bullshit and spin. Stop releasing press limpments ‘calling (urgently)’ for this, that and the other. And actually do something.

What you are doing at the mo clearly ain’t working.

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The dream

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JusticequiltLast night I dreamed that Sloven Health pitched up at LB’s pre-inquest review meeting and argued that his death wasn’t unnatural or violent to avoid there being a jury at the inquest.

That they still hadn’t disciplined staff 18 months on. I dreamed that they had been surveilling my social media activity from the time LB went into the unit. And written and circulated a briefing about my blog, the day after he died. I dreamed that they didn’t pay attention to the content of the blog, other than scanning for defamation nobbling opportunities. So they completely ignored the warnings I was providing around his seizure activity.

I was kind of momentarily relieved when I woke up.  I’d been dreaming. I mean we’re talking about the NHS here. The National Health Service. A publicly funded body built on the premise of equality of healthcare for all. Not some grubby, two bit, private organisation that couldn’t give a flying fuck about people.

Hind, foresight and the two Phils

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Nico Reed’s inquest concluded yesterday. With the coroner making what appears (to a completely lay law person) an important statement. He overturned two of his own rulings to rule (re-rule?) that Article 2 of the European Convention on Human Rights was engaged on facts of Nico’s case. I’ll leave it to Lucy Series to kick off early thoughts about this and focus instead on what I do know something about.

The legendary Phil Gayle (and team) who had Sloven’s director of social care on their show today. Another Phil. Phil Aubrey Harris. A brief summary/set of notes/important points here from the discussion.

Money, morality and humanity

Apparently 20 minute checks written in a care plan are a guide. Not something that must happen. With a few people to be looked after by one member of staff “there is an inevitability that those checks are unlikely to be maintained“.

Wow.

There is (considerable) jiggery pokery in Sloven practice around hindsight and foresight. The necessity of frequent checking only apparently recognised ‘in hindsight’ (ie. after someone dies) despite being clearly stated in a care plan.

Wow.

Care plans therefore characterise ‘ideal type’ situations. The 20 minute check is something that should happen if resources weren’t a consideration. Because resources clearly are, this foresight/hindsight distinction leaves a pretty murky area around regulation/inspection. It’s difficult to observe the acting out of a care plan. Especially in the early hours of the morning.

“Just help me out here, as a lay person, as someone who might one day have to use a unit like this, for someone I love...” said the wondrous PG wrestling with this gulf between care plan and practice.

“It’s a guide“, says other Phil. “Based on individual needs, blah blah de blah…”

“Was one member of staff to those four patients sufficient?” PG returned to, with a hint of impatience.

“I think it probably was“, said other Phil.

Eh? The coroner rules that Nico’s death was possibly preventable because he should have been checked more regularly, but the staffing ratio was sufficient?

And there were other risks associated with Nico’s care.. said the Gman, without missing a beat.

Oh yes. These were known about. “There were plans in place within Nico’s support plans to acknowledge those risks and to mitigate them”.

Pah. You lost me. Is a support plan different to a care plan? Is a support plan actually acted on? Does anyone know what they’re talking about here?

The Gman moves on to ask whether things are going to change in response to what happened to Nico.

There follows a remarkable but largely unintelligible statement that seems to suggest (on the third listening) that Sloven are now determined that if they ain’t properly resourced by commissioners/local authorities to provide the level of care necessary “we wouldn’t take those [packages of support] on without some sort of challenge with the assessment teams or some sort of local authority or local authorities or whoever it is who is funding those packages”. 

My half arsed interpretation: Don’t blame us for the crap care we provide on the pennies you’re willing to spend. Or, we’re happy to rake in the spondoonies to provide ‘care’ on a shoestring until something catastrophic happens. And then, ex-cer-use-me. Don’t come banging on our door…

Overloading the person to staff ratio at  minimum cost (thereby erasing any consideration of a life that has a sniff of fulfilment, contentment, enjoyment, achievement or productivity) as common practice until an NHS or private provider is dragged under the spotlight. And then offering a half arsed ‘you should have coughed up more’ defence.

What a sordid, sad and shameful situation.

In the final minutes of the interview, the Gman asks why Nico’s family were not told about the circumstances of his death for over a year. More bluster. The Gman, clearly affected by what he’s hearing says;

“With respect, other Phil, you use the phrase ‘with the benefit of hindsight a lot and you use it about decisions that anyone else would regard as common sense..'”

He nails it here. Common sense engagement with an extraordinary situation. Stripping away ‘learning disability’ and engaging with what has happened at a human level. Drawing on common sense. On everyday stuff. That we can all relate to.The Gman called it today. As his show has consistently done in relation to LB.

Until people can chuck away their blinkering lenses of learning disability, ‘challenging behaviour’ and other labels, we ain’t going to get anywhere. We are talking about people, experiencing situations that if they weren’t labelled as ‘learning disabled’ would be called out in a multitude of ways.

And Sloven. As ever, you are fucking shit.

 

 

Sloven and the CCGs

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So here’s a mid-week quizette for you. The review into deaths in Sloven provision is going to have an expert panel to “review all the information and make recommendations on any further action required”.

Do you think this expert panel will include:

(a) Experts in reviewing deaths, particularly those occurring in mental health and learning disability provision?

or

(b) Representatives from Sloven and the two sets of commissioners on their patch (Oxon and Hants)?

Yep.

(b) Sloven and the CCGs. Sounds like a craphole Christmas No. 1.

Needless to say Meeting the Mazars was duly logged in The Little Book of Crap Meetings, under ‘Drenched with Incredulity’.

Rich walked out. After saying exactly what he thought of the death review so far. I caught the train to Glasgow.

Where it pissed down.
Justicequilt-3

Adventilicious

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Meeting the Mazars didn’t really pan out as we were expecting. But here I want to focus on the positive stuff. The #justiceforLB advent calendar kicked off last week and really… how bloody brilliant is it?  Nine days in and we’ve had three films; Tom and Rich chatting about LB, reflections from Santa on the #LBBill and a fab new (proper) film from the My Life My Choice crew slamming home the message that disabled people aren’t benefit scroungers. We’ve premiered some of the Postcards of Awesome, featured some iconic campaign images, been on the road to do the #hairhack workshop, had a #WeLDNs twitter chat about the Bill and crowdsourced pictures of the #yearofthebus trail in London.

And we’ve announced that the Justice quilt will be exhibited at the People’s History Museum in Manchester from 1-22nd April 2015. This is so unbelievably fab that we almost can’t believe it in the Justice shed. Chunky Stan has always been ‘Stan, dog of the people’ and LB had such a love of history that, along with the Rodgers school buses, the Earthline Scania heavy haulage trucks, the police involvement and his rocking legal team, the pieces could not fit together better for the quirky young dude with a smile that lit up the universe.