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…

The days afterwards… sharing experiences

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I found out the fullish details of the unexpected death of another dude we knew about in Oxfordshire this afternoon. Kind of lucky (is that the right word?) I had the day off. His mum (I’ll call her Maria for now) was worried about how upsetting it would be for me to read this. Yeah. It was. As upsetting I’m sure as it was for her to write it.

It was also shocking. And harrowing. Damning of health and social care for dudes. And so illustrative of how completely inconsequential our dudes lives are to those who are paid to provide care and support for them. Not necessarily to those who actually work directly with them, but certainly pretty much everyone above that tier. How can this be?

I just wanted to flag up a few things that leapt out at me now about those early days.

When an unexpected death happens within the NHS, families have no idea of “the process” about to unfold. And not knowing means that the NHS holds all the power and, probably reasonably regularly, the ability to keep things unexplored, unexplained and out of the public domain. I know in the post-Francis world of candour and transparency this should no longer be the case. But as the old world shows no real signs of waking up and joining in, I’d advise families to think the worst. Sadly.

I was contacted pretty much straightaway (on twitter I think) by a wonderful barrister who had been reading my blog. She advised contacting INQUEST immediately. I think I spoke to her the day or so after LB died but I can’t quite remember. It was such an unimaginable time. I emailed INQUEST on the Monday morning so suspect I must have done.

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LB died on the Thursday not the Monday. This email alone illuminates how fucked up the system is. Can you imagine emailing an organisation less than four days after your child’s death in hospital to ask for advice? Advice? How can this be?

At the same time, it underlines how important it is to be informed. Within four hours of sending this email an INQUEST caseworker was in touch and phoned to explain exactly what would happen, what we needed to do and what to expect. It was a terrible shock. The cuddly NHS suddenly seemed a whole lot less cuddly.  We were recommended a solicitor within days and I was making calls to the Coroner’s Office to demand that LB’s autopsy was done properly. Can you imagine?

Maria and her partner weren’t given early warning of what they should do and what lay ahead of them. So they dealt with different horrors. Just as damaging. What was similar were the throwaway emails from Ridgeway/Sloven Health. ‘If there’s anything we can do’… type comments. These statements are so awful they should be banned from any interaction to do with unexpected deaths in the NHS (or any setting really). How are you supposed to respond? Where on earth do you start given where you are? What can you do? What are you offering? What do you mean?

Maria’s husband received a mobile phone message from the manager of her son’s ‘care’ home stating they should let him know if he could ‘help with the funeral arrangements’. Eh? You’ve just found out your child is dead and some suit is lobbing meaningless ‘small talk’ at you. Vague comments around ‘help with funeral arrangements’ is nonsensical to a bereaved parent. What help? Making sandwiches? Finding a venue? Stumping up the cost? Choosing a coffin? Deciding on burial or cremation?? It’s at best a careless offer and at worst a dirty trick. To tick a box and scarper as far from the fake offer as quickly as possible. Not sure there needs to be much of a sprint at this point as I can’t imagine many parents/family members will pipe up with any suggested ways of helping.

I don’t know but suspect this whole vile crap, uncomfortable offer comes from empty policies coloured by the discomforting thought of unexpected death within an organisation designed to sustain health. I’d suggest get over the discomfort and work out the type of support families in such situations would want (practical support like food, cleaning, clothes washing, money to cover being out of work, funeral costs, paying bills, contact with schools/university/employers, emotional support like counselling, etc, etc) or withdraw the empty offer. Even with good intentions it all becomes nonsensical given the seemingly unavoidably enormous costs involved in preventing the NHS steamrollering over what’s happened.

“Er, yes, thanks, can you provide the egg sarnies at the funeral? Cheers…” [Up to £25-30,000 of legal costs? Wha??? … ]

In the meantime, the anniversary of LB’s death is getting closer. Something I’ve been able to avoid dwelling on largely because of the remarkable distraction of #107days. If any influential NHS or related peeps want to openly chuck their Post-Francis commitment and belief into the transparent, democratic and collective joyfulness captured in these days of actions, I’m sure we can fit you into existing days. In the spirit of making the incomprehensible/baffling simpler. And hopefully to show early steps to different ways of doing and being.

An antidote to the obscene. And inhumane.

“A place I call home”

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Warning: It’s 12.30am. I’m on Madison time after a full on, action packed four days in the States followed by Epic Party Night. My ability to think, write and judge is probably a bit wonky. I just caught up with the latest ‘news’ from the Winterbourne Joint Improvement Programme and I’m going to be a bit short and to the point. LB died (he died?) and I really don’t want to hear more shite about shite.

    1. Ditch the niceties and stop thinking there is some “treat” space to ‘focus energies and attention on what can be achieved’. Real people are experiencing crapshite experiences that would not be acceptable to most people’s pets.  Stating ‘We are where we are’ as if there is, or has been, no agency involved is offensive and unacceptable.
    2. The passive, hopeless ‘we’ve only got a year to go so what can we achieve?’ is nails on blackboard stuff. If you take on a tough gig, you should really have an understanding of the terrain.
    3. Ditch the ‘we must give hope to the individuals and families who are currently in hospital settings…’ Those individuals and families really don’t need your empty words. They have a much more sophisticated understanding of the landscape of provision and horror they or their family members are experiencing. They want action.
    4. ‘We must not decide the challenge is too difficult and give up’. Er. Not sure what this is supposed to mean/achieve. But if you want to bung me whatever salary scale to work within such parameters, please do. “Ah, thank you NHS/social care employer, I took on the task with good faith but the challenge was a bit tricksy so I’m giving up… Oh and that tiny blip about abuse in one of my residential provisions? We really don’t need to go there, I’m doing my best…”
    5. ‘I’m pleased to announce there has been a 100% return from NHS local and national commissioners’. Eh? So there is a choice attached to providing these figures?  As ever, I can’t help wondering if there is some sort of longstanding joke going on. The whole system seems to be hamstrung by nonsensical demands and yet in areas in which attention really needs to be focused, there is an ‘opt in’ attitude.
    6. Stating ‘if you want to know what the situation is in your area please do ask your local CCG’ is a bit like saying ‘Rarra hoo ho, bolowlo, bloooblom gara‘. Most people don’t know what a ‘CCG’ is and if they do, contacting them is one of those mysterious (utterly frustrating) processes.
    7. The discrepancy between the figures and ‘what was agreed by the partners in the Concordat’ is something you should be dealing with. Presenting a set of unexplained figures that don’t fit with the model of what you expected to achieve at this point, with a bit of a curious question mark attached is, erm, fucking unacceptable.
    8. Not sure now you have ‘robust and detailed quarterly figures’ this will actually lead to change.
    9. Talking in terms of ‘local heroes’ is pretty offensive. It shouldn’t be seen as ‘heroic’ to provide appropriate support/provision.
    10. As I always bang on about, the focus on the well being of people who were in Winterbourne View ignores people in other, similar settings.
    11. ”Unsticking’ complex situations’… ? Eh? What does this mean?

Basically, what a pile of old crap. It strikes me that we have an extreme case of provision for a group of people that no one cares for or about, other than their family (if they have one), that have a historically designated space (despite a body of evidence that challenges this space) in which all bets are off. Restrain, medicate and leave to fester. And yet Commissioners can find around £200,000 per year to keep people in places you wouldn’t leave your dog in for a weekend.

LB died (he died?). Can you imagine? Can you imagine your 18 year old son losing his life through sheer carelessness in a hospital? Nearly a year ago now. The only concrete response other than the crap hole unit he was in closing (which is a cheap shot to avoid actually changing provision), is a blanket ban on bathing for remaining patients in the next door unit.

I want to ask the Winterbourne JIP/Department of Health/NHS England;

What the fuck are you actually doing?

What have you done all this time?

How much funding has been spent on the Winterbourne JIP?

 

The Epic Party Night

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Last night was ‘the party night to end all Justice for LB party nights’ (Day 73 of #107days). We don’t do things by halves on this campaign. There was a two pronged approach to this night; a big bash at the Oxford Sports and Social Club organised by Becca and the life raft and an English Country Dance at Bletchingdon Village Hall organised by Caroline. I work with Caroline and she came to the JR hospital with me on July 4th last year. I don’t know what it’s like to be with someone in such unspeakable circumstances (my mate Mary who works in A&E was also there). Caroline shared that experience.

ryan5-679The big bash caused Becca and the gang quite a few sleepless nights. Volunteers queued up instantly – two great bands from Oxford (Mean Montage and Yowash), Alan Joyce, the bacon bap seller from outside Oxford Rail Station, NansforJustice who covered the cost of the room which was offered to us at a great rate by Jenny O’Loughlin, the General Manager at the Oxford Sports and Social Club (OSSC). The most stylish tickets imaginable were designed by Vic, Sam and Trev from Identica, and LNS Print produced em for free. Frog Orange produced an Eddie Stobart themed balloon bouquet and backdrop ‘LB’.

The ticket sales were less hot off the press and given the ballroom at OSSC holds hundreds, there were some anxious moments around ending up with a handful of peeps kicking around awkwardly in the face of such generous contributions. This was an anxiety Becca, her family (particularly Chris, Rory and Julian) and the life raft absorbed and ran with. And, on the night, there was a brilliant turnout. Nothing like a bit of ‘if you build it they will come’ with a hefty dose of behind the scenes organisational graft and magic.

And it was a truly great party. The music was fab, the baps and ice cream fantastic. Charlie’s Angels were there along with other school staff, LB’s classmates, friends, family, Parasol, the young dude from Day 41 and many, many more.

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What helped make it such a good party was the space. The giant ballroom (Emperor Ballroom) at the OSSC is a legendary space; enormous, vintage decor, opening out onto a patio (right word?) with tables and chairs,  a cricket pitch and playing fields. With a good value bar. It’s a space that allows different levels of party going/attendance and young kids/dudes or adults to randomly roam, run, spin, withdraw, play a spontaneous game of footy and/or dance their socks off.

ryan5-686 For us, it’s a space in which Rosie stood in for Rich when she was about 12 to hand out medals to the tiny footy team he coached (and she assisted) in his absence. A fear inducing experience she carried off brilliantly. Around the same time, Rich was hoiked out of the enormous line dancing class we went to for being too disruptive. He was made to first stand at the front, then excluded. Last night he returned to the stage in triumph as The Amazing Geoffrey and Kid Rage (aka Rich and Busker John) did a short set of LB’s fave songs to a delighted audience. Their first ever gig together.

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It’s also where we held the party after LB’s do last July.

Sad times that the club is due for demolition in 2016. But an epic ‘party night to end all Justice for LB party nights’.  In Bletchingdon and Roman Way, Cowley. LB would have loved it.

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More talk and the bath ban

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LB’s death shone a spotlight on the inadequate provision for learning disabled people provided by the Sloves (and Oxon local authority). I don’t expect they’re out of the ordinary across NHS Trusts though some of their actions are breathtakingly shite. Once visible (well, once published in a CQC report a few months later), the Sloves were compelled to look lively. That LB’s death sparked no action indicates the level of problem we’re looking at here.

So what did they do? They flew in a trio of experts to examine their pathways and provision. KP, her merry women and man went on tour, meeting the Oxon Learning Disability Partnership Board and other people/organisations. A big, big new plan was developed, discussed at length in their board meeting/minutes. The modern way… In the meantime, they became subject to enforcement action by Monitor. Serious stuff. The march of change backed up by big guns.

Wow. A blast of fresh air through learning disability provision in Oxon. LB died but hey, other local dudes will be getting service with bells on. Person centred, buffed, polished, informed and thoughtful. New committees formed and a Quality Director post created.

Meanwhile, back at Slade House, the John Sharich unit was re inspected by the CQC. They couldn’t inspect STATT as that was conveniently closed. The inspectors found that a lack of therapeutic environment remained, staff were still in the office and a blanket ban on baths was in place. Yep, a ban on baths. Despite none of the remaining patients having any risk factors associated with bathing. And despite a patient staff ratio of pretty much 1:1.

A bathban?

The Sloven journey for the last 11 months has been largely one of performance, waste and prevarication. An exemplar in talking the talk to persuade the great and good they’re up to the task. Meanwhile on the ground, clearly a million miles from any understanding of person centredness or good provision, LB’s peers are being punished for his death with breathtaking disregard for their human rights.

This news caused disbelief and incredulity over on twitter. One person tweeted, if a patient choked to death in their care, would they implement a ban on eating? Sadly a young dude did die in circumstances a bit like this a year before LB. But because the Sloves have so far managed to keep a lid on the circumstances surrounding his death, nothing has changed.

Breathe easy dudes and families of Oxfordshire, eating ain’t banned yet.

Taxiing on the runway

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imageI flew to Madison on Monday on a work trip. This involved two flights. On the first, to Chicago, I took some work to do then planned to watch a film and chill a bit. There were no freely available films. I worked till my laptop battery ran out. Leaving three hours left of the flight. This was a bit weird as I always look up at the sky when I think about LB. (Dunno why really. I just do…) When I was up there, without much to distract me, it felt odd.

I sat next to a woman who did sudoku, without break, for the entire length trip. On either side of us were elderly couples. One of the women flicked through her holiday pics on her camera. I couldn’t help having a peek. Sunshine, sea, her and her partner, other people, celebrations, sunshine, blue sky. I felt consumed by an intense and raw sadness about what had happened to LB. And to us.

A few hours later I was on the second flight to Madison. Without taking off. Storms meant we did a slow taxi for a couple of hours, in and around the runway spaces. Trailed by a queue of different sized and decorated airplanes, passing catering trucks, transit vans and stationery trucks. It was like a careful tour of the inner world of the outside space of an international airport. ‘LB would bloody love this’, I thought. Looking up at the sky.

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