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.”

*tumbleweed*

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.

More puzzlement

Bill Mumford resigned from the Winterbourne JIP today after a second incident of abuse was discovered at a MacIntyre school. Media coverage of this largely focuses on the impact on the (failing) Winterbourne JIP. Abuse schamuse really. No flicker of interest.

Odd, given this is what sparked the setting up of the Winterbourne JIP.

Why is this? Why’s the discovered/alleged abuse of learning disabled kids or young adults largely irrelevant in the reporting?

Naming these incidents ‘safeguarding issues’ probably contributes. It sounds so benign compared to the graphic images portrayed in the Panorama documentary. Combined with the swift shutting down of any discussion about it. Only a few days ago, Mark Lever, Chief Exec of the National Autistic Society wrote a moving piece about the importance of providers’ sharing occasional failures openly for #107days.  He pledged to convene a roundtable with providers to explore this further. Openness has to be the way forward. Bill Mumford today said that MacIntyre have been asked not to make any further comment while the police investigation is underway. Bill published a similar statement on the Local Government Association website about the first incident in which he discussed stepping down from the JIP.

I’ve been thinking about this whole keeping schtum while investigations are being done recently. We’re blanketed by investigations at the mo. Staff (possibly though still haven’t been informed), police and a serious case review. You’d think my posts would be looking like the set of redacted emails from Sloven. Or my blog would have been disappeared.

Nah. Seems like I can say quite a lot about what happened without the earth caving in. Not everything. But quite a lot. So I’m left thinking (and please, lovely legal eagles who stumble across this blog, feel free to send me a short, sharp ‘shut the fuck up tedious, raging woman‘  if necessary) that the ‘can’t possibly say a word till after the investigation/trial/inquest/’ is a bit of a tool used to control and silence people. And contain the truth.

More than happy to be put right on this.

That there are continued instances of abuse, over decades now, seems to call for a bit more openness and transparency. And something else. The traditional processes clearly ain’t working.

Beyond sanction

I read the latest Sloven minutes properly today. As always, large chunks of incomprehensible guff and spin. For example: Simon Waugh asked for further clarification as to the reference to the use of “appreciative enquiry”, as stated in the Director of Quality’s report; Chris Gordon explained that this was a tool used by the CQC which looked to triangulate sources of information and used a framework of support and challenge to develop learning organisations. Eh?

Further on was a screeching brake moment. Page 16. A  glitzy pink table refers to the investigation that cheeky David Nicholson committed to, back in the day. One of the objectives of the Connor Manifesto.  As the Real DN outlined in his letter to us in March;

We are also asking that Southern Health NHS Foundation Trust provides the NHS England Area Team with details of all the patients who have died whilst receiving mental health and learning disability services since the trust was formed in April 2011. An independent panel, commissioned by NHS England, will then be formed to review all of the information, including the cause of death, and make a
recommendation as to whether further investigation is required.

All good. An independent panel and all that. Given both LB and Nico Reed were whizzled to the ‘natural cause’ pile before you could say Slovenshite (and the broader shocking statistics around mortality among learning disabled people) it’s crucial to have a good look at the premature deaths of learning disabled people (sob) and make sure failings/issues aren’t being overlooked or ignored.

The Slovens clearly have a different take on this review. Bit like their response to the recent Monitor enforcement action against them which was presented almost in a comedic way (er, just making a few plans with current bezzy, Monitor, over tea and cake…) The pink table states the ‘current position’ as:

Chief Operating Officer & Deputy  Chief Executive informed the Board that Thames Valley LAT was coordinating this review, which was comprised of two phases. The first related to looking at benchmarking and comparative data to determine whether the Trust was an outlier; she noted that if there were any areas of concern, a second phase would be commissioned, which would be a deep dive review.

The final column in the table states that the review is ‘proposed for closure’. Proposed for closure. Before it’s even started.

Wowser. What happened to the independent panel? And review of all information?

What a breathtaking example of what? I don’t know. Spin? Gobsmacking arrogance? Stupidity? Denial? Of ‘too big to fail’? Certainly how Sloven don’t get people. Well not learning disabled people. Benchmarking and comparative data? We’re talking about patients who have died unexpectedly.

And how can they dilute a serious review into a bit of number crunching? When it ain’t even their fucking review?

I’m out of ideas. A year on and there has been no sanction against any individual/s or the Slovens/Local Authority or Clinical Commissioning Group. And now it seems we have to police the small steps (we think) we’ve achieved.

The system stinks like a Stinky Pete leather tannery in Morocco. And the Slovens seem to have a unlimited supply of mint leaves to stuff under their noses and pass through. Unaffected. And seemingly unconcerned.

LB

I watched a montage of home movies made by LB’s granddad Pat yesterday evening. He put it together from over 9 hours of footage in the weeks after LB’s death. I couldn’t get beyond the first moments till yesterday. When I wanted to re-capture insights/memories … I dunno. What are they? Precious moments that add texture to a shortened life…?

I saw LB as a babe. That beautiful face. Seriously, seriously cute. I mean, seriously cute. That laughter. Pure delight. That bounciness. Waiting and expecting and receiving the spray with the garden hose, the circuit of granddad’s garden on the sun lounger. The infectious laughter. The repeated Christmas rituals, unwrapping a truck/bus or lorry that needed full on package removal. More bouncing. Joseph in the nativity play. Joseph? I’d forgotten that. And what a serious Joseph he was. An exercise in concentration among the typical, noisy, joyful chaos of a John Watson school performance.

I was reminded of LB’s mannerisms, his character, his intense quirkiness. And that ease in lying on the floor, pretty much anywhere. Completely immersed in moving a bus/lorry backwards and forwards. Time and place irrelevant. A completeness of being. Magical and remarkable rule breaching.

Watching him now, on these fading home movies, I’m winded by indescribable loss. And enraged at the vile system that defined him as deficient. That muddied who he was for us for a while. And ultimately killed him.

My beautiful, beautiful dude. One year on, I carry you around in my heart and think of you every moment I step outside and look up at the sky. And with each bus, coach and Eddie Stobart lorry that passes. You were, and always will be, a bloody legend.

xxxx