Monthly Archives: June 2014

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.

Black is black and ‘S’ Club Sloven

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Bit of a convoluted story tonight. Involving collecting train tickets from work and darting to the sorting office (completely crappily located outside the ring road) to pick up an important special delivery letter before attending a meeting with NHS England local team and families. In the sometimes comedic car share car. Remarkably, the traffic cleared at 7.20pm allowing me to pick up the letter with 10 mins to spare.

Eh? I thought, as I was given an enormous envelope. Important and big. I drove to the meeting, parked and opened it. Eurgh. It wasn’t the letter I was expecting. It was Part two of Sloven Candour. The mop up of missing emails mentioning me from their original trawl which found, er two.

I had a quick flick through the thick file before going in to the meeting. A sea of blackness. Literally. Seriously?

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Most text has been redacted to the point of almost (not) hilarity (see above). This ‘new’ documentation is from a strangely narrow band, March – May 2014. And only people with names beginning with ‘S’ seem to avoid redaction; Sue, Sandra and me (aka ‘mum’). Well done Sue and Sandra for stepping up. Katrina Percy is only listed once. Probably by accident.

One of the rare things left un-redacted was the fact “the family” stopped “service users” attending LB’s funeral because we didn’t want staff attending. Not true. We’d asked if they could be accompanied by staff who didn’t look after LB. Staff from the other units or locum staff. Another cracking example of Sloven selectivity.

I didn’t have a chance to look at this latest [I don’t know what], when the meeting got underway. A summary:

  1. NHS England Thames Valley area seem genuinely committed to changing learning disability/mental health provision in Oxfordshire.
  2. Everyone present recognised that this was currently shite.
  3. There seems to be a broader commitment to change among the CCG and local authority.
  4. Relevant external people have been drafted in to critically comment on the process of change.
  5. Pat (Bill, Pat and STATT Pat) now has a tablet and is playing candy crush.

At the same time:

  1. Funding to support necessary change is wishful thinking.
  2. Shite provision up to the moment was recounted by parents present with no sniff of improvement (in harrowing circumstances).
  3. There were no answers why the provision at Slade House hadn’t been improved since the CQC inspection in September.
  4. There was an expectation that families and learning disabled people are essential for teaching professionals how to do a proper job.

I’m writing about this meeting for a few reasons. 1. Because sadly I can now. 2. Because in Oxfordshire, we seem to be at a point in which the ‘chance’ for actual change seems to be now. Attention, focus, passion and commitment to change is on full boil because shite provision has become so visible. 3. Because this ‘change’ needs documenting.

So, bring it on. Our campaign is about effective change and we’ll shout from the rooftops with delight if it happens.

In the meantime. The new blue file. Awkward, offensive, combative, vile and dishonest. Further demonstrating complete disregard for LB and us as a family. No sniff of candour, honesty and transparency. Simon Stevens, if this gets poked under your nose in the lofty heights of NHS England Tower, please step up and do something. This hideous behaviour is a form of torture. And your name begins with S.

 

Removing the wing mirrors

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Had a full on week, last week. Monday, the Partnership Steering Group’s one day conference at Manchester University, Day 82, #107days. An event shared and chaired by learning disabled people throughout. Tuesday, a meeting with our MP, Andrew Smith, and Deborah Coles from INQUEST. Wednesday evening, Rich and I hung out with young people at a group run by My Life My Choice and Parasol. They wanted to talk about LB. Anger, rage, disbelief and bafflement that he was left to bath unsupervised.

Friday, the Cardiff Law School’s conference, Deprivation of Liberty Procedures (Safeguards for whom?), at the Law Society. LB’s artwork illustrated the flyer and Paul Bowen, QC, dedicated his paper to #107days. The bar (sorry) preventing the involvement, engagement and recognition of learning disabled people as full citizens is clearly under assault.

That morning, I  walked from the hotel to the Law Society and realised within minutes I was going to pass LB’s favourite shop of all time. One of the spaces that anchored London as his favourite city and his longstanding desire to ‘be a Londoner Mum’. Model Zone. At the far end of Oxford Street. Model Zone. Where LB would carefully snap the wing mirrors off thoughtfully selected, hugely expensive, limited edition die cast coaches before leaving the shop. With an audience of gawpers. He’d learned over time, and a shedload of distress, that these would break at some point and found a way of managing that moment of inevitability.

I instantly got that now familiar feeling of part primal howl, part panic attack, instant blurred vision and countering internal steeling of ‘deep.breath.deep.breath…’

MZ was shut. Boarded up and being redeveloped.

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Eh?

Closed?

……? When? How?

I googled it on my ipad in a nearby doorway. They went bust days before LB died.

[???] …

Walking on to Chancery Lane, I carefully removed the wing mirrors as LB learned to do over time. Model Zone was shut. A piece of his childhood gone. A space we shared and enjoyed. Better it was shut than experiencing the pain of seeing punters carrying on die cast model life without the quirky young dude who broke all the rules of die cast model ownership. With care.

Inquest and inequity

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Had a meeting at lunchtime with Deborah Coles and Selen Cavcav from INQUEST and Andrew Smith, our MP, today as part of #107days. The meeting was at Portcullis House. A building with a random, mini airport type security gig going on that is breathtaking. Bags scanned. Bodies scanned and ordered in out, in out, shake it all about. Patted down by serious, super silent, severe security people. Wow.

Instead of leaving on a jet plane (sadly), we went through to an enormous atrium to grab a drink from the heavily subsidised cafe and up to Andrew Smith’s office. Wow. I’m clearly in the wrong business. An office/room/corner space with a view that captured the London Eye, the Thames, parliament buildings, Big Ben… Wow.

It turns out Andrew Smith has lived in Blackbird Leys for years (thirty four years). I bloody love this fact and I bloody love his office. But this wasn’t about spaces. It was about what he could do to help #justiceforLB. We had a fairly action packed 40 minutes or so, in which Deborah demonstrated INQUEST magic and (policy) knowledge in buckets. Key issues were discussed and plans made. These will be reported elsewhere. I just wanted to focus on one part of the discussion. The inquest and inequity that exists around inquest funding.

I got a real taste today, through hanging out with Deborah and Selen, of the centrality of the inquest. I sort of knew this but hearing it talked about made it clearer. The inquest is the mechanism by which families are able to find out exactly what happened and to explore the circumstances surrounding this. And it’s crucially important to have the right questions asked. If, as we hope, LB’s inquest comes under Article Two of the European Convention of Human Rights (he died in the care of the state), the inquest will be broader and involve more witnesses and, possibly, a jury.

The inequity kicks in when it comes to legal representation for this. The NHS (Slovens) are able to bring out the big solicitors/barristers for the inquest funded by, er, you and me. If social care are required to be there, they will be able to draw on a legal team funded by, yep, you and me. If the Oxfordshire Clinical Commissioning Group, likewise. So health and social care can draw on the public purse to provide top level representation to defend themselves against families of patients who have died (howl).

And families? They have to foot their legal representation. To stand firm in the face of the NHS legal team and get someone other than themselves to ask the questions, they have to fund the legal costs themselves. There is some Legal Help that is means tested and covers the costs of pre-inquest preparation and early advice but representation in the inquest is unfunded outside of the exceptional fund.

I’m not going to go into the nitty gritty of the hoops involved in trying to crack the exceptional fund. I just wonder how it can be possible that LB died a preventable death in the care of the Slovens, and they can effortlessly draw on unlimited legal support to defend the indefensible while we have to stump up, or fundraise (thank you everyone who has contributed) £1000s?

?

It’s so wrong, it almost takes your breath away. And. Where, in any of this vile, hideous, inhumane process is there any consideration of the compete and utter pain we are experiencing?

I left the meeting pleased it was positive. And, within moments, so blinking sad that LB never got to see the newly designed Routemaster buses pretty much nose to nose along my walk back to the coach stop.

 

Phony, fake and clueless

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Rosi Reed, mother of Nico, who died nearly two years ago now about ten miles from here, has decided to talk openly about what happened to her beautiful boy. A summary of this has been written by Gail Hanrahan. A terrible, shocking and heartbreaking story. Another wasted life through disregard and indifference. As Gail points out, there are some striking similarities between what happened to Nico and LB. But also striking differences in our respective treatment by the Slovens. These differences underline the complete fakery of the Sloven way. And how they really don’t have a clue.

After the CQC failed inspection of Slade House published in November, Sloven shut one unit rather than improve it and banned baths in the remaining unit. Returning inspectors found a continuing lack of therapeutic environment and staff still locked in offices. Now if like me, you avidly follow the Sloven board minutes, you will be well aware they have a new learning disability action plan (or pathway) they are pretty excited about. They employed some swat team of experts to help develop this plan.

How they can, on the one hand, be developing a ‘plan’, while at the same time leaving known crap provision to remain, er, crap is beyond me. It demonstrates how fake this whole process is. And that’s because it’s all about process and not about people. If they thought, for a second, about the people left to fester at Slade House, their priority would surely be to make improvements there. It ain’t rocket science to provide a therapeutic environment (it’s a treatment and assessment unit with a team of professionals, costing £3500 per week, FFS.)

Fran, our advocate, made a complaint to the Slovens about her son James’ transition meeting recently. This meeting was an absolute shambles. Particularly shocking given James’ horrific experiences in an out of county placement a couple of years ago and that he was meeting one of the psychiatrists involved in LB’s (non) care. Despite LB’s death, despite the CQC inspection findings, despite the presence of the swat team of experts in the vicinity, Fran’s complaint ran to around 26 points. 26.

KP responded personally in a letter which includes seven ‘apologies’, one ‘sincere apology’ and two ‘sorrys’. Given that Fran was pointing out a level of inadequate care that makes you wonder if she’d actually gone to the local sorting office instead of a hospital, the number of apologies was probably warranted. Thirteen action points were produced from this letter. 13.

KP thanked Fran for pointing out these failings. (no words)

Meanwhile, Rosi ain’t been courted by KP.  In the response to her complaint about not being informed about the internal investigation into Nico’s death, not being allowed to see the report and having to return Nico’s diaries to the Slovens, KP wrote pages of ‘self excusing prose’ (three personal ‘sorrys’ and one sorry on behalf of another staff member). She included the following recommendations arising through Rosi’s complaint:

1.  Families of those people who have died while being supported by the Trust are actively offered meetings with managers to offer support if needed
2. Families are informed by the managers that an investigation will be carried out if necessary
3.  Protocols are formulated to ensure all staff are aware that records of the deceased person should NOT leave the service, unless removed for archiving

Can you imagine receiving this after the death of your child? Does KP have a heart? She writes as though she’s responding to a complaint about milk being left out of the fridge.

Nico doesn’t feature in the Sloven minutes (unlike LB who rose to lead feature in KP’s recent report). An independent inquiry wasn’t commissioned into Nico’s unexpected death. KP wasn’t pulling every trick in the book to meet with Rosi and her family either.

Because till now, Rosi wasn’t making a noise. And that’s how it rolls in the world of learning disability, unexpected deaths and the NHS. You can chuck the candour manual in the nearest skip when push comes to shove. The real process is a quick and dirty internal investigation typically by some close colleague of the unit/ward/home being investigated and not worth the paper it’s written on. What a pile of shite. Particularly when you have a trust as leaky as the Sloven’s, with a Chief Exec who is all about style over substance, awards over decent provision and doesn’t have an ounce of understanding what this experience is like.

So, LB died. Nico died. No staff member has been formally disciplined. The learning disability provision remains shite and failing. CQC and Monitor are regulating. And nothing has actually changed. Rich and I bounce this question backwards and forwards to each other, regularly:

“Er, what do you reckon would have to happen before something was actually done?”

Answers as always, on a postcard. £1 each towards fundraising to cover the legal costs of battling this bunch of muppets. You couldn’t make it up.

Our Charlotte

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In my last post I outlined the way in which we were launched into the world of legal representation via twitter and got ourselves a solicitor highly recommended by our new caseworker from INQUEST. Charlotte Haworth Hird from Bindmans. Charlotte was very highly recommended. Being completely unfamiliar with any of this new world we wanted no part of, we just held on and ran with it.

Before the relationship was officially sealed, Charlotte spent some time on the phone with me, talking through some extremely upsetting and uncomfortable things (autopsy details, potentially delaying LB’s funeral, the enormous costs involved in having legal representation at an inquest and what we could realistically expect to happen). Again, I can’t describe what it’s like to have these sorts of conversations days after your child has died, but Charlotte was sensitive, thorough, kind and comprehensive.

We dropped out of touch with her for a couple of weeks then picked up the communication after LB’s do. We arranged to meet her at her offices a few days later. Before the meeting, she emailed about various bits and asked us to send a photo of LB so she could “put a name to a face and see who we are fighting for”. That kind of sealed it for me but you don’t know anything in the world of the completely unfamiliar.

We met that first time for about four hours. We were hopelessly late as we pounded up and down Gray’s Inn Road with me getting the office number completely wrong. It was boiling hot and beyond stressful. I’d wanted to scream at everyone on the train from Haddenham where we going and why but of course, you don’t. Charlotte was an oasis of calm. She talked us through excruciating and agonising details and memories and thoughts. With compassion and sensitivity.

Since then we’ve largely interacted by email. Typically, very short, two liners from me and essay length responses from her. The kind of emails you need to read a couple of times to grasp all the content but, at the same, emails that contain everything you need to know. Including all the stuff you had no idea you needed to know.

I hope very, very few of you are ever in the position of doing what we’re doing. But if you are, a brilliant solicitor you can completely trust is priceless (not only because they costa del fortune). We’re delighted Charlotte just won the ‘Inquests/actions against the state’ award at this year’s Legal Aid Lawyer of the Year Awards. Wow. So deserved. And so blinking brilliant that her remarkable work to try and get justice for LB contributed towards this.

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I’m pretty sure she’ll cringe her socks off at this post (she most definitely doesn’t do twitter or social media) but Charlotte, from one of your clearly many satisfied (not the right word… Grateful? Desperate? Heartbroken..) punters, you’re fighting the fight in a way that’s restorative, reassuring, heartwarming and bloody exceptional.

And keep asking to see those photos…