Another fine mess

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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

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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

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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

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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

A coating of what?

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Rich and I went to the All Party Parliamentary Group on Learning Disability this afternoon in the Houses of P. Reporting on progress from Winterbourne View. Lord Rix chaired. Phil spoke movingly about his young son Josh being so far from home. Hazel Watson from NHS England talked about what was being done (as ever, being done, rather than done) about closing assessment and treatment units (ATUs). Viv Cooper from the Challenging Behaviour pulled up the Winterbourne Joint Improvement Programme for non-action across three years. The Executive Director from the LGA (who?) said words. I was reminded of washing LB’s hair. Water bouncing off with none penetrating his thick and unruly mop. Words. Bouncy bits of water. Doing nothing.

I stopped listening and thought about bath times.

Norman Lamb, Minister of State for Support and Care talked the talk. Passionately engaged with trying to get people out of ATUs. What are the obstacles Norm?

  1. Absence of information about who is in them. [in hand]
  2. A lack of senior people in NHS England responsible for the programme. [changed since March with Jane Cummings/Hazel Watson taking responsibility]
  3. A reliance on psychiatrists making clinical judgements about placements when they are paid by the service providers. [brain melt]
  4. Problems around funding and funding flows. [an apparently insolvable problem]
  5. An ingrained culture in which learning disabled people aren’t seen as equal citizens. [It’s up to all of us to change this one].

Ok. We know the issues. What’s going to happen? Er, fuck all by the sounds of it. Norm has his hands tied apparently. Hugely frustrating n’ all, but those local clinical commissioning groups/local authorities are a plinking law to themselves (paraphrasing a bit here). There are no local services to support the release of people. People aren’t released because a) containment is a cash cow for providers and b) local authorities can’t suddenly stump up the costs for newly released people.

Eh? Sorry Norm, but if you can’t do anything to change things, who can?

*tumbleweed*

In the room were a largish group of parents. A group of parents who, between them, had enough atrocity stories to sink a battleship of pointless talk and no action. And that’s without chucking in the fact that LB died [he died?]. In the small amount of time left for questions, completely harrowing experiences were lobbed at the panel in Committee Room 4. Overlooking the Thames and the London Eye. Each story should (and would) have led to criminal proceedings if they had occurred outside ATUs. Stories of abuse/assault/neglect and fear. Against people who are not listened to or able to fight back.

This being a British affair, the atrocity stories were comfortably absorbed without visible shaking of etiquette. LB’s death even popped up in the discussion as something unspeakable but at the same time, a little bit of a ‘fable’. A work in progress version of a horrific event acknowledged but, at the same time, written out of the landscape. Our dude has made it to the parliamentary table, but with a particular coating. A ‘move on and thankfully not mainstream news’ coating.

We went to the pub. And chewed over next steps with Mencap and the Challenging Behaviour Foundation. A shared recognition of the scandalous/untenable position that is.

Yep. And?

All in a weekend…

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Yesterday, we got back from Eseld’s christening to news of Martin, Chris and John’s remarkable cycling achievement (107 miles?!) More wow stuff. (One of the many things we’ll do with #107days is a totting up of spaces and distance covered…)

Over at Glastonbury, the #justiceforLB flag made the BBC 3 homepage and, despite the broken flag pole, continued to engage, charm and spread the campaign word. The Goodley/Lawthom clan demonstrating on the ground activism in legendary colourful brilliance.

Just to keep us firmly immersed in the cesspit that is negotiating with a state related death of a child, we also came home to more email correspondence from Sloven.

You couldn’t make it up. Post-Francis/post-Keogh/post-whatever talk ain’t reached Sloven Towers in any shape or form. More comedy (not) redaction. Page after page of black.

Bit of a stark contrast between #107days action and the knee jerk, impossibly fraught, tightly bounded responses of the various state institutions implicated in what happened to LB. ‘It wasn’t me guv’ statements of denial/non-involvement/implication tattooed on numerous foreheads, eyes firmly pinned on the floor.

Well here’s a radical thought.

Maybe take the spotlight. And own it? 

Maybe shine it on your own patch and ‘fess up to the fucking obvious? You can’t get much more bleeding obvious than LB’s preventable death [he died]. Don’t send out reams of redacted bullshite paperwork. Paperwork that causes more distress, anger, rage and despair. When, believe me, none is necessary.

Why not step off the well trodden conveyor belt of beating families into submission through relentless unnecessary actions and call a halt to ‘cover up/contain’ meetings?

Why not take the randomly colourful (and I assume more comfortable) path of talking openly about what went wrong and why (without mention of ‘lessons learnt’)? I don’t know, but imagine relevant staff from across Sloven/Oxon County Council/Clinical Commissioning Group would feel a shedload better right now if this had happened.

The flag pole broke but Team Glasto picked it up, improvised and carried on campaigning. On the ground. No black in sight. Sharing LB’s story with people who got it.

People tend to be pretty open and responsive to things that are obvious. That’s probably what underpins #107days. Nothing fancy. Just a simple recognition that a young dude had his life cut short in a completely unacceptable way. LB should be looking forward to his leaving prom night this week. Wearing the sharp suit.  His turn, at last, in the stretch limo. On the brink of adult life. A life of possibilities/opportunities stretching ahead of him.

Instead, he died. In an ignored and indifferent space. And all the redaction in the world ain’t going to make that fact disappear.

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An aw-battle

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Into the last week now. Approaching ‘the anniversary’. I don’t want to mark this date. It makes me feel sick. But it’s unavoidable.

The tap tears are back. Slightly delayed/derailed by the continued magic of #107days. A strange standoff between the awfulness of what happened and the awesomeness of what is happening. An aw-battle.

That’s good really. Less than a week to go. And no collapse. I steel myself over and over to think about the good stuff, the years of happy and hilarious memories. Yeah. That’s comforting. A shedload of awesomeness.

Then I come back to the enormity of life without LB. Of the canyon size space he left. That there will be no new memories. That the stories and memories have stopped. He packed em in. Giving us the richest bank imaginable. But they gotta last and spread across however many years. Maybe losing colour and texture along the way. [Howl].

And every ‘special’ day – birthdays, weddings, Christmas, Easter, even holidays – has become a day of sadness. Or more sadness. Sort of anti-special days.  Days I’d rather avoid. How crap is that?

I don’t know.

What do you do a year to the day your beautiful, funny and off the scale of quirky dude drowned in the bath in hospital?

What a difference a day makes..

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What a day. The #justice flag arrived at Glastonbury, Change People held a conference in which energy sizzled across twitter with 1.3 million mentions. Oxfordshire Family Support Network published their Healthwatch funded report and the legendary Phil Gayle and team produced a one hour special about learning disability provision* in Oxfordshire.

A one hour special. Wow. Wow. Wow. Wow. This team have meticulously and carefully reported on unfolding events for the best part of a year now. Today they captured the views of Andrew Smith MP, Paul and Jackie Scarrott, Josh Will’s dad, Phil, Mencap, John Jackson from Oxfordshire County Council and Norman Lamb. I was the link herb across the programme. My brain pinging around in random ways hearing the different contributions and my heart howling at various points. Occasionally lifting when I heard strong and sensible declarations of not accepting the unacceptable.

The big news underpinning the morning show was that Sloven are unlikely to have the contract for learning disability provision in Oxfordshire renewed next year. A bit of a public blow and embarrassment given the five year expectation involved in taking over Ridgeway in November 2012. Sue Harriman, working out her notice before she scarpers, was the obvious talking head pulled in to describe disappointment and some candid reflection about getting it wrong. Katrina Percy was, as usual, invisible. The importance of fronting up the public failure of the Slovens to provide adequate care for the group against which the quality of all trusts should be measured, completely lost on her. Sloven social media tweeted about safety in swimming pools abroad.

I’m left wondering what happens to the Slade House site if the Sloven contract isn’t extended? The place where I took LB wearing his ELC police tabard and orange binoculars to draw the brown lines for the crapshite clinician. The place we drove past a billion times over the years. For trips to here, there and everywhere. The place we took LB to in January, for a ‘crisis’ appointment with the community psychiatrist. The place we eventually, took him eight weeks later. To become an inpatient. A place that didn’t understand what a patient was.

It’s a tasty chunk of prime developmental land.

*Andrew Smith is at 2.07, Jan Sunman at 2.39 and the one hour programme starts at 3.05, available for one week.

 

Landscape for a Sparrowhawk

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ryan5-716After the last couple of miserable, raging posts, here’s a snifter of sunshine, light and colour. #107days continues to be extraordinary. A truly unique campaign. Fundraising is a go go. We’re ticking off some of the items on the Connor Manifesto which is amazing. The tender is out for the Serious Case Review, jointly commissioned by NHS England and Oxfordshire Adult Safeguarding Board. This has a broad remit, to add to and extend the Verita findings. The terms of reference for the review into unexpected deaths in Sloven learning disability and mental health services are being decided at the mo. And the police are conducting a full investigation. Our lovely CID guy called with the news yesterday. LB would be seriously delighted with this decision. His belief in the criminal justice system undented.

Finally, Landscape for a Sparrowhawk, by the remarkable Janet Read (started on the train on the way to LB’s funeral that hot summer’s day last July) is now above the fireplace in our front room.

The spirit and essence of our beautiful dude woven into our lives in so many ways.

Dropping balls

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Got back from Nottingham this evening after a couple of hectic days away at a conference. And eventually picked up the blue folder again. The covering letter explains what it contains. Turns out I made a cock up with the dates on request two. My original request asked Sloven to provide copies of all emails/letters/reports and telephone transcripts that ‘refer to me’ between March 19th 2013, the day LB entered the unit, and the date I made the request.

I called Sloven information provision people in May after receiving the two emails this had turned up. I was told they’d searched for my full name and that was what I’d asked for. After a conversation during which my phone melted with incredulity, I agreed to put in a ‘supplementary request’ to include the various permutations of how I might be referred to in Sloven communications (a non-exhaustive list);

All personal data referring to me (to be searched as any combination of the following words ‘Sara Ryan’ ‘mum’ ‘mother’ ‘family’ ‘CS’ ‘Connor’ ‘Sparrowhawk’ ‘SR’ ‘Mrs Ryan’ ‘Connor’ ‘Sparrowhawk’)

I specified between March 19th 2014 and the current date.

Oh my blinking blimey. I dropped a ball there. And the Slovens ran with it.

I can only dream of getting a call back from the information disclosure people. Quickly refashioning my phone into a usable shape to take the call. Gathering my breath. Pinning the relentless tears into a ‘will defo catch up with you later’ space enabling me speak.

‘Just checking whether you’ve possibly made a mistake with the dates specified because the time frame is a bit odd really… did you mean 19th March 2013? We’d like to get it right given the circumstances.’

There is no tear ‘pen’ space with this bunch of fuckers.