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 Nah, that ‘responsible clinician’ label is stuffed in a cupboard, next to the out of date oxygen tanks, quicker than you can say ‘HSJ Inspirational Leader’ when something goes seriously wrong.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.

twitter 1

twitter 2

twitter 3

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.

Bill, Bubb and the Plan

A year ago tomorrow (I’m on Japan time so my timing is a teeny bit flakey) it was LB’s do. Today he featured, along with Josh and Chris on the Today programme. I don’t know what I’d have thought about this a year ago. I wasn’t in a fit state to think about anything really. The thought of burying our child was so off the scale of anything I could make sense of (and remains so) – drenched in unfiltered,unmediated horror – that any thoughts of what will, could and should happen were pretty much absent.

The Today programme. Hey ho. Pretty major national coverage. A brief segment aired despite the lack of a no show by Jezza Hunt, Norman Lamb or any government official. The stench of doesn’t count hanging heavy in the air as ever. Thanks to Zoe Conway for running with the story despite this.

I was offline all day and came back to find that NHS England had appointed Stephen Bubb to head a “new group of experts and advisors to develop a guide for how to provide health and care for those with learning disabilities”. Bubb, who has the baffling role of Chief Executive of the Association of Chief Executive Organisations according to his blog biog (hahahahaha) wrote on his blog about this new role which seems to involve some responsibility for the Winterbourne JIP. This isn’t clear because he only reports on the first of three questions apparently asked of him by Simon Stevens, new head of NHS England.

Bubb’s blog made me wonder why the fuck NHS England had given him this gig. But who am I to comment on the Chief Executive of Chief Executives? A mother who wants (deserves) answers and accountability I suppose. So I’ll work through his post that I recommend read in full. [I won't screengrab it because the sooner it disappears/is edited the better really].

So. From the top. “Inpatients” of ATUs don’t necessarily need “to be cared for by their families”. (And ditch ‘service user’).

It wasn’t “courageous” of Yawnman (sorry Norm, trying to continue to love ya but out of patience with the hands tied response) Lamb to suggest there should be serious consequences for the “Winterbourne abusers”.

“Simon Stevens was clear that only the third sector could deliver the promise and he wanted me to look at a plan for ‘co-commissioning between the NHS and my (?) members.” Eurgh really? Er, what is the promise? Does Simon Stevens know what has been attempted so far by the Winterbourne JIP? And what do you know about learning disabled people Bubbsey? “My members”?

It gets worse.

“I gathered my top provider members in learning disability for a breakfast to discuss our options. They were enthusiastic for the task. [...] Mark Winter, my (?) multi-talented Head of Health Commissioning wrote up our Plan on the back of that breakfast.”

Tsk tsk Bill (and predecessors in the long and sorry story of Winterbourne failure). You clearly missed the secret brekkie meeting weapon.  And writing the Plan on the back of it. Foiled by the use of traditional means of note taking. Without hash browns or fresh OJ. Thank fuck for Bubbs and his creative thinking. One breakfast and sorted.

Joking aside. And it really ain’t a laughing matter. This ill (non?) informed man is apparently tasked (why? At what cost?) by the newly appointed head of NHS England to sort out the reduction of the numbers of people in ATUs and improve the lot healthcare of learning disabled people. With no apparent understanding, knowledge or experience of learning disabled people. And no apparent engagement with any learning disabled people or family members.

Have we bounced back a few decades?

“Of course with any such task [I seriously hope there ain't many tasks like this Bubb] there will be a multitude of views and interests but I’ve been pleased so far [er, 30 seconds and the snaffling of a few croissants?] that we all seem to be on the side of sorting it out, and that means being client centred.”

The astonishing and gut wrenchingly depressing finale:

“We submitted the Plan and it was accepted.”


Tomorrow I’ll be thinking about that long hot day, last summer. When we followed our beautiful boy in a red Routemaster coffin in a red Routemaster bus to the cemetery.

And I’ll try not to think too much about the layers of shite that have happened since.

From puzzlement to good old humanity

Being a bit buffeted around the houses at the mo with the various happenings around the various non happenings around what’s (not) happened. Yep. A year on and … ? Not an awful lot really. Though a lot on paper. The wheels of justice and accountability seem to turn anti-clockwise when it comes to learning disabled people.

I heard tonight that Rodgers Coaches who dedicated three red double decker buses to LB have dedicated a fourth. Apparently the sign writer won’t take payment.  As the legendary Mrs Buhweet says ‘give a person a chance to show their humanity, and they will’.

Here’s to what you can do. If you can. And you do it.

To Linda Rodgers, Mrs Buhweet and the sign writer. Who show how it can and should be done.

BsSMMkzIMAAmkcb (1)



Another fine mess

I was pretty shocked/horrified to get this comment on facebook last night in response to yesterdays post about abuse in a second MacIntyre school.

Oh my god Sara things have been going horribly wrong at here for our daughter lately and we kept trying to find out what was going on no answers -so many staff jumping ship and change of carers at residential care. Much to our frustration and anger no-one was filling us in on anything but tonight I learn from your blog that this is exactly what is going on at a place where our daughter attends has left me sick to my stomach. She is about to leave here and now I just want to pull her out tonight. What the hell type of care do they call this …..I am gutted truly gutted …….

Caroline (not real name) learned via facebook that there was an investigation into abuse at her daughter’s residential school?

I noticed the increase of agency staff that had not being introduced to Jenny or ourselves. I made a complaint and was assured that it would not happen again. We are dealing with autistic people here with very complex needs and epilepsy and after everything that has happened in Slade House, I was being a complete pain in the backside about everything being monitored and who is working with Jenny when… Saturday night we rang for our usual evening update… only for the phone to be answered by a complete stranger and we could hear poor Jenny in complete distress roaring and screaming so rather than wait for the stranger to explain, we went and got her at 9.30 at night. Raging, I demanded to speak to head of care there this morning and would not leave until I saw her.

She was a complete nightmare saying “she understands” how frustrated I feel. Oh my god I lost it. “Do you? Do you really know how hard it is to have your only child in residential care only to find that she is NOT getting the care she is entitled to?” 

Still no mention as to why staff at the house were all leaving in a matter of weeks. We could not figure it out. But OCC did not let us know either. So fucking angry . My head is all over the place – I don’t know what to think. Why weren’t we informed ? Why ?

Not sure there’s an awful lot to add really. Other than the cesspit of health and social care provision for learning disabled young people and adults is clearly festering in Oxfordshire. And the positive action taken over the first MacIntyre abuse incident may have led to the second one being discovered, but some other balls have been dropped along the way.