Drop the dead donkey

More intense reading this week. The CQC inspection. Back in September. More evidence that LB’s death [howl] had the impact of slightly sour milk being poured down the sink. The Oxon Commissioning Group at a meeting in County Hall (less than 100 metres from where I’d just returned to work in September last year) minuted that STATT had been given a green light in January 2013 (due to the “positive engagement” with Sloven). Wow.

And then, a planned visit to the unit in the summer didn’t happen because of ‘the death of a service user in the unit’.

Wow.

A dead donkey.

The visit didn’t happen? After someone died there? Am I missing something?

The content of the CQC inspection of STATT needs no revisiting. Assessment and treatment had long gone (if ever present). It was a site of malaise and perceived bullying/overly process driven and ignorant/detached management. The spread of this toxic mixture was apparent in the observations of the inspection team. A damning and shameful account.

LB was kind of caught up in this. His death wasn’t a focus of the inspection. But he’s there. Part of the space, the story, the life (and death) of the unit. Epilepsy non-management, family non-involvement, non-choices and flaky capacity decisions. Hideous.

Sloven had waded in to bid for the Oxfordshire contract with a campaign worthy of whatever it cost. They talked the talk impressively enough to win the gig. KP filmed her message for Ridgeway. Then did little else and got caught out. Big time. Three failed CQC inspections in Oxfordshire in a matter of months. A complacency born of ‘too big to fail’ syndrome. A focus driven by sponds rather than patients.

Bizarrely, nothing has happened to the Sloves. They seem to be able to act without sanction (nonsensical redactions, undisclosed medical records, ongoing (into infinity) staff disciplinary procedures, letters sent to wrong recipients or dead patients, sacking advocates, veiled accusations of me trolling and hacking into their staff twitter accounts, blocking JusticeforLB supporters, etc etc etc).

In another set of heavily redacted emails I was sent yesterday, someone (redacted) emailed KP;

This is clearly a very painful period and one that is not made any easier by Sara Ryan’s unwillingness to engage with you. I feel you and your colleagues are continuing to deal with this in as sensitive and professional way as you possibly can

Are we living in a parallel universe? Here is a copy of the briefing they produced for Monitor. The world according to Sloven; 20140515094441957. It contains this note at the end:

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Accurately my arse. It seems impossible to understand how such high level professionals could mistake two completely different phrases which have completely different meaning. When did the police start deciding cause of death? And the police were conducting an investigation at that point (and still are) so the whole statement is a fabrication to try to wriggle out of such a damning response to LB’s death. In an official briefing document?

It should be a concern to everyone that something as serious as death [he died?] can be treated so carelessly or worse. Not to the Slovens though. In their May board minutes (page 16, item 7.7)  they proposed for closure the independent review, commissioned by NHS England, that is being undertaken into the deaths in their mental health/learning disability services since 2011. We asked for this review because we were concerned that the ‘natural cause’ label had been slapped on other patients in the past. And appreciated David Nicholson actioning it so straightforwardly.

It’s not Sloven’s review to close, as they then report in their June board minutes (and it certainly ain’t complete) but they are arrogant enough and, apparently, untouchable enough, to do and say what they like.

Astonishing. Are they living in an imaginary world? Is the Board complicit in this or completely in the dark? Are Monitor/the CQC/NHS England/Jezza Hunt/Norman Lamb, etc etc not concerned about their actions?

Why is any of this?

The Leavers’ prom

It was LB’s Leavers’ prom when I was in Japan. All those years of waiting for the limo to turn up with the Leavers in it. Proud as punch. Some anxious at what lay ahead. The last prom LB went to was in July 2012, pretty much a year to the day he died. He was rocking cool as always. Pictured here with Maeve, the deputy head. ryan5-756

Charlie’s Angels weren’t going to stop him having his moment however. They invited us to come along to enjoy a celebration with them. Here’s the email Rich sent me later that evening;

It was a tough one but glad I went – really cool to see all the dudes having such fun and enjoying themselves. Really powerful when the limo arrived.
     Connor was so clearly absent and missed. But the Angels had put out (new) pictures of Connor and written comments from class mates and stuff on the benches in the car park – so he was there in spirit and ‘arrived’ with his peers.
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     We all went into a lovely little paddock adjacent to the hall and gathered round in a big circle (around the pictures and his classmates words) and then released two big bags full of balloons (in Eddie Stobbart colours). I cried. It was really moving and very sad. But also so full of love,  so much genuine love and feeling – so much more real than the worlds we often have to be in now. The balloons all went off high and close together – fantastically mixed in all sorts of colour formations until they went out of sight. None were caught in trees or any other obstacle.
    I stayed for about an hour, met the head teacher and made sure he knew how special, dedicated and wonderful his staff are and how much they have helped and supported us.
     I spoke to lots of people, some I knew, some I didn’t. Some remembered when Will and Owen came to the prom with Connor – which was cool – I have that great picture of Will, Connor and Matthew on my desk. Connor was in everyone’s hearts but in that special way that only he could be – light, fun and loving. He was the centre of the night but in such a great and positive way – just as he would have been if he could have been there in person.
     He is still shining so bright. It felt like his smile was just there for everyone. I know it’s not much but that smile is becoming more and more the way I remember him, the vision I hold of him – I loved that smile.

 

And a couple of the comments from his classmates:

Connor you were always a good friend to me. I have always enjoyed my time with you, we have been through a lot together over the years from archaeology club to Yenworthy. I learned a lot of interesting facts about buses and Eddie Stobart lorries from you. You were very funny with all the jokes you told me. I would always laugh at them because they were all so good! I miss you so much Connor. It is really different and sad without you here. Morgan.

I miss you Connor. Hope you had a good time. Liam

Thank you, as always, to the Angels. xxx

Championing Katrina and the (f)utility bill

On Thursday I received an email in response to my ‘access to records’ request to Oxfordshire CCG and local authority:

I would be grateful if you could provide me with proof of your identity; a photocopy of the relevant page of your passport or driving licence and a recent utilities bill would be acceptable. I would also need consent from or proof that you are the personal representative of Connor Sparrowhawk to allow us to be able to release the above details. Please let me know if this causes any difficulties.

The rest of the day, in between the Oxford Mail photographer pitching up (twice) for a ‘sad’ photo shoot (picking among the dog shit in the back garden), a shortened chat with a BBC Ouch journalist, and a visit from the NHS England chosen lay representative on the Serious Case Review, was spent raging/howling on the phone to the NHS Central Southern Commissioning Support Unit about this request.

“You’re all (fucking) NHS at the end of the day? Why can’t you join the dots?” I raged. [Without the swearing].

I tried to explain my distress;

Our son with epilepsy was left to drown [howl] in the bath in a heavily staffed, hugely expensive, specialist unit over a year ago…

Nothing has happened in response to this. Despite an independent investigation and CQC inspection providing evidence that the place was appallingly run…

… and no. I am not prepared to go to a solicitors office and get an affidavit to ‘prove’ I’m his mum [their suggestion] to send with our leccy bill to release these documents.

Meanwhile, in the sunshine world of the NHS (according to all things Bubb) we received the response to a collective letter written to the chair of a Royal College of General Practitioners (RCGP) Inquiry into person centred care in the 21st century. We’d written to say that the inclusion of the Chief Executive Officer (CEO) of Sloven on this panel (I know) was questionable given the ongoing investigation into LB’s death.

At a fairly basic level, if you are putting together a panel of experts, why include someone who is in charge of an organisation with an unfolding of set of failures around learning disability provision? Especially when the pool you could choose from ain’t that small.

Katrina Percy, CEO, didn’t have to account for herself in this exchange. There were no demands for utility bills. Or broader questions around legitimacy/credentials. Instead, a shutting down of any discussion;

The incident took place less than a year after Katrina took over responsibility for the service – and during a period when she was in fact on maternity leave.

Wow. Championing Katrina. What a defence of the individual rather than the role. Astonishing. Maternity leave simply ain’t relevant here. And the introduction of that little known construct of ‘practice CEO’ when all bets are off in terms of accountability for a year after acquisition. Wow. The world of the NHS certainly works in mysterious, opaque and chummy ways.

And no, I ain’t sending a futility bill or proof of birth. I quipped on twitter I’d have to send a bit of umbilical cord and someone replied ‘umbilical cord and a bucket of tears’. Yeah. That just about captures it.

Sloven delay

Been getting a bit weary in the last few weeks, partly because of this Bubb thang, partly because of Sloven delay. Delay has characterised the Sloven response this past year. And I know it’s been the same for Nico’s family. They take an age to do anything (other than pitch up for award ceremonies). Sloven delay;

about to or in the process of doing something with no end point in sight. And no whiff of urgency.

We are still waiting to hear the outcome of the staff disciplinary investigations. It’s over a year since LB died (he died?), and five months since the independent report was published (they had to wait for that, apparently). And still nothing. How long should this process take? What the fuck does it involve? And are six or seven members of staff really still suspended on full pay?

There is also a growing stench that any staff disciplining may only involve the Nursing and Midwifery Council. No whiff of a clinician or two getting a rap across the knuckles here. Nah, that ‘responsible clinician’ label is stuffed in a cupboard, next to the out of date oxygen tanks, quicker than you can say ‘HSJ Inspirational Leader’ when something goes seriously wrong.

Sloven have always paraded their staff as their main concern. Right from the get go. Patients schmaycents. No support for LB’s peers when he died such a nasty, preventable and public death. Being the non human types they were (and clearly still are). But oodles of concern about staff wellbeing. Same with the independent investigation. Layers of staff cosseting while we were left to wait. And wait. The final version of the report further delayed as the Slovens decided, at the last minute, to let staff comment on it. They delayed sending a full set of LB’s notes until two days before the report was due. They obstructed (may turn into delay when I get my arse together to complain about this) disclosing mention of me within Sloven towers by sending a set of black pages.

Delay is a quietly cruel and inhumane tool in this context. I can’t describe what this process is like because there are no words, but I do know it has been made so, so much worse because of these delays. Completely unacceptable but seemingly unmonitored.

In thinking about the treatment of family members when there has been a catastrophic incident resulting in serious harm or death, one of the simple actions NHS England? Monitor? CQC? Someone? could do is make sure there is no delay. Through effective sanctions.

As always, it really ain’t rocket science.

Dog the Bounty Hunter, the LBBill and a campaign down under

I’ve been thinking today about what it’s like to deal with what we’ve been dealing with. In terms of the process/experience. Rosie’s in London with the wondrous Jack, Tom’s in Hinksey Park with his mates, Rich and Owen are playing cricket with Busker John and I did some gardening, cleared up a bit (yes, Rich, I did), had a snooze and then sat down again to do some ‘work’.

Work. Two Freedom of Information requests. And a bit more research into the complicated story around Ridgeway Trust, Sloven, shared budgets and the big takeover. Dull, dull, dull beyond dull really. But necessary work.

“Get over yourself missus, piss off out into the fresh air… have some fun!” I hear some of you mutter, understandably bored by my focus on this.

I’d love to do that. But I’ve no confidence whatsoever in the ‘process’ of getting justice and accountability for LB’s death (he died?). This no confidence is not a random, irrational position, but one built up steadily and consistently since July 4th last year. The latest revelation that LB’s  death was upgraded from Level 1 seriousness to Level 2, seven weeks after his death compounds this.

I think about LB when I do this laborious stuff. Which is quite cool. He was such a justice hound, idolising the Metropolitan Police (and Dog the Bounty Hunter). How could we not pull out all the stops for him?

So far #justiceforLB/#107days has been instrumental in the ‘making of a scandal’, the ‘making of a serious incident’ and the ‘unmaking of a cover up’ (allegedly/hopefully). It has also inspired the thinking about and beginnings of the #LBBill; a Private Members’ Bill giving learning disabled people the statutory right to be able to live in their own homes. (Bill making is in the more than capable hands of Steve Broach, Mark Neary, Neil Crowther, People First England,  Simon Duffy and an army of people/families more than ready to change things.)

It has been an absolute slog in some ways (all credit to @georgejulian for extraordinary effort, commitment and action as informal campaign manager). But it’s also been a complete delight to be part of such a joyful movement for change in such a typically negative, downtrodden and ignored area. Evidence of this joyfulness is peppered over twitter/facebook and blog posts/comments and emails, but here are some titbits from today. I can’t believe the dude made it down under…

Awesome dudereeny-ness.

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The making of a serious incident

Under a Freedom of Information (FOI) request, we received the full file yesterday of the CQC inspection into Slade House last September. A delight to receive (largely) unredacted documents, unlike the pages of black received from Sloven. At the same time, a harrowing and distressing read. The published inspection report necessarily providing a precis of the appalling provision found there. How could they?

Among the 39 documents received, was a letter from Sloven to the CQC (Sept 24th) saying, amongst other shite, that they had “agreed with commissioners and the Local Areas Teams (NHS England) to upgrade the incident involving the death of a patient at STATT in July to a Level 2 SIRI“. (Becoming a bit of a dab translator of Sloven speak, I suspect this means they were told to change this grading.)

NHS guidelines around serious incidents can be found here. On p.23 it states;

    • Initial incident grading should err on the side of caution, categorising and treating an incident as a serious incident if there is any possibility that it is.

Classy old Slovens went for the natural cause grading initially. Chucking err on the side of caution out with the defibrillator battery (and giving it a tick on the matron walkround sheet). Astonishing. They didn’t even deign to properly investigate the context of his death and the services being provided in STATT in July. Stating in the same minutes (23.7.23) that due processes were followed. Tick. (Bit like the local authority/commissioner visit to STATT in June last year where senior staff were asked about restraint; “Face down restraint Guv? Us? Nah. Never”. Tick.)

Level 1 investigations (p.37) are;

incidents involving No Harm and Low Harm and/or where circumstances are very similar to other previous incidents.

Now as LB died, the first two criteria don’t apply, and unless Sloven have a habit of letting patients drown in the bath in their provision, the latter isn’t relevant. So it seems extraordinary his death wasn’t judged to be worthy of a Level 2 investigation. I can only think, that, under a Sloven lens, any death of a learning disabled person is.. well a death of a learning disabled person. Kinda irrelevant really. Very similar to all those other deaths (4 in 10 learning disabled people die prematurely).

LB’s death finally became the serious incident it always was after a regulatory body found the unit he was in a shit hole and the commissioners/local authority stepped in. If this isn’t evidence enough that no NHS Trust should conduct an internal investigation into the unexpected death of a patient in their learning disability/mental health provision, I don’t know what is.

Footnote: I don’t know how much I have to spell out that not only was LB’s preventable death scandalous, but it is also completely unacceptable that we are having to nip at the heels of a sloppy, careless (or worse) and completely disregarding Trust (and other relevant bodies) to make all this shite visible and demand accountability. Every interaction with the Slovens has involved delay, prevarication and nonsense. And NOTHING has happened yet. Does Katrina Percy/senior management team have someone overseeing their actions or can they do what they like? [And on that note, if someone could bung this under the nose of Simon Waugh, Board Chair, that would be helpful. I don’t have time to write to every fucker who might actually have some influence to do something. Not after a whole year of this nightmare]. 

 

A very public record

The anger and rage around the appointment of Stephen Bubb continues to play out in social media. Bubb, himself, feeds the fire, effortlessly with no need for further comment. The set of comments on my previous post (and on many posts on this blog) provide illustration of the consistent fight, fear and disempowerment of learning disabled people and their families.

Around 16 years ago now, I first met Fran, our advocate, through what we thought was a groundbreaking new initiative by the local authority. The ‘Parents Advisory Group’ (PAG). Wow. We were ready (we thought) to challenge the world of ‘special needs’ and bring about change. Such naivety. We thought nothing of the parents ahead of us in this new and strange world.

Earlier this year, Bill Mumford came to meet a group of Oxfordshire parents and allies including Pat and other carers, who had decades of caring experience. It was more than apparent that the fight had been fought, without sniff of victory, over and over and over again. The balance of power firmly in the hands of the provider (NHS or otherwise), commissioners, local authorities and staff who can, with ease, draw on the devastating tool of ‘contact’ and worse to control dissenting voices.

Right now, we have a bit more welly than we did back in the days of PAG. We have a platform not previously available to the likes of Pat (although she, and many others like her are still standing ready in a way that makes me weep at their undented commitment in the face of decades of fuckawful fighting).

It’s kind of fascinating to see the fire fighting techniques of the conventionally powerful (including big charities) at the mo to #justiceforLB. Apologetic (lay) name dropping blog posts, press releases, personal emails/DMs, tweeted ‘concerns’ or ‘pleas’ to unite rather than fragment, meetings involving a cherry picked few to neutralise/counter mobilise.

In addition, we receive genuine and heartfelt messages of support from some. Outraged and frustrated by unfolding events and complete lack of action.

Earlier, George Julian reflected on how we’re damned if we do and damned if we don’t in terms of engaging with discussions around the latest shambolic developments. Mark Neary has pretty much captured all that needs to be said in his post; ‘So tainted, it can only do more harm than good’. We ain’t being divisive or difficult (a pretty offensive insinuation, given that the only division throughout #107days was the deliberate lack of involvement by any big charity other than the NAS*). We all know that this new steering group is not going to lead to any effective change. It will simply eat more time (not nosh anymore, I suspect) with talk. Years and years of talk.

It was an error appointing Bubb. One he underlines with each post. One that is documented in various posts and tweets. A very public error. One which will be analysed and written about in future dissertations/research projects. The beauty of social media is that voices of dissent can’t easily be silenced. And remain visible. A very public record.

So. For the record, we have no alternative agenda or conflict of interests. We simply want effective change. Not one member of Bubb’s merry band can say that.

*Ironically the likes of the NAS and Mencap were set up by raging parents.

What a fucking shambles

Jane Cummings has responded to Bubbgate today. Turns out the Plan isn’t a Plan after all. Well not one that says ‘We’re going to do a, b, c and d’. Eh? She rapidly counteracts Bubb’s posturings. One by one. Awkwardness on awkwardness. Has someone hacked the world?

So continuing with the complete failure of anything Winterbourne, we’ve now had the wastefulness of Bubb’s play breakfast meeting in which fuck all was achieved other than capturing in the headlights the CEOs of the big charities who should know better.

How could you sit round that table?

How could you?

Meanwhile Jan Tregelles is working the room, trying to pick off various vocal tweeters and schmooze them in private. More fucking awkwardness. Or maybe just typical spin action. Just out of interest Jan, where were you when LB died? No sniff of getting in touch then. I despise this action aligned with self interest that completely ignores the pain and suffering of LB and countless others, and their families.

It’s time this mess was brought out from behind closed doors and dealt with openly, transparently, and with learning disabled people and families on an equal footing. In a Bubb free setting.  It’s clear, given we’re three years on now from the Concordat fanfare, you don’t have a bloody clue. None of you. And if you did, LB would be travelling in that limo right now, heading for his leavers prom. Enjoying his turn on the red carpet.

I’ve had enough. I don’t want to feel such utter and abject pain anymore partly because a bunch of overpaid, overly self important and ultimately ignorant people can’t stop performing, prevaricating and spinning such complete bullshit.

You make me sick.

Papering the cracks

It’s 4.07am in Japan and my rubbishy (non) sleep continues. It’s odd dipping in and out of unfolding developments from afar. So what’s happened on the Bubbgate front? Well, the Bubbman has updated his blog and Mencap and the Challenging Behaviour Foundation (CBF) have issued press releases to try and cover their backs. Stephen Bubb’s update is, as I would expect despite having only known of his existence for 48 hours now, an exercise in complete arrogance. Mencap and CBF have clearly been caught with egg on their face (sorry, these breakfast jokes are going to run and run) and are, like the Bubbster, proclaiming their complete conviction that learning disabled people and families must be involved in this new group. Just awkward all round.

I kind of feel despair really that no one round that breakfast table (apparently key players in the provision of learning disability provision) either thought or had the guts to say that a Plan couldn’t possibly be developed by such a narrow group of chosen few. What a clear illustration of talking the talk and not walking the walk. The complete lack of action in changing learning disability provision becomes so understandable in the face of such cosy, myopic and self interested players.

Anyway. It’s LB’s leavers prom tomorrow. He won’t get his chance to ride in the limo. The school invited us to attend and are going to let off some balloons in his memory. Rich is going (sob). As @georgejulian tweeted this morning, ‘how special that school can consistently get it so fecking right’. Yep. It is.

And how beyond depressing that so many others, with power and influence, get it so fucking wrong.