After a right old craphole week, thought it was time to briefly summarise where we’re at (as far as I know). In no particular order and focusing completely on process (partly because I’m trying not to think about the big M day* tomorrow):

The police are seeking early advice from the CPS about a possible prosecution. [Keeping us informed and up to date]

NHS England are going to commission an external review into the stuff not covered within the Verita investigation (social care, mental capacity, why LB went into the unit and why no plans were made to discharge him, etc etc.) Time frame six months, terms of reference to be written. The Real David Nicholson (who has now retired and his tweets are blooming hilarious as a result) is responding in writing to the Connor Manifesto. [Keeping us informed and up to date]

Adult Safeguarding Board. Not a dicky bird since our solicitor requested a serious case review last summer. Apparently they are considering commissioning one now which may supersede the above.

Oxfordshire Clinical Commissioning Group. Chief Exec is going to answer our main question (what have they done since LB died to investigate why they continued to commission provision they historically knew to be inadequate?) by April 4th. A further set of questions (thanks to twitter contributors) will be answered on their website within 20 days. [Since I phoned him this week he is keeping us informed]

Oxfordshire County Council, Social and Community Services. Not a dicky bird. The Director responded to a letter from My Life My Choice this week. In it he says the council check the quality of services every year and lays the blame squarely at the Slovens feet.

What a load of old baloney. Anyway, sounds like the buck is currently bouncing over to Social Care Towers as they are the lead commissioner. [News via twitter]

The Slovens. My lovely big sis attended their board meeting this week in the Hampshire countryside and was swept off her feet with tea, biscuits and Katrina love. She managed to remain razor sharp and has fed back that KP was stopped in her spiel about meeting us by the Chair of the Board. He said their continual pressure on us to meet with them could be seen as pushing their agenda rather than ours and if that was the case, it would be “incredibly insensitive”. Thank fuck for a bit of sense within Slovetown. No other news other than they are under a helluva lot of scrutiny and word on the street is there may be (even more) trouble ahead.

The inquest is delayed until the various investigations are complete.

#107days. Hehe. I know this ain’t part of the official process but blow me down. What a campaign. Absolutely brilliant days so far and so much still to come. A celebration of all things dude spreading so far from Scotland down to Kent, stopping off in Yorkshire with LB buses in Vancouver, (appropriately) by the Statue of Liberty this week and more drawings on our facebook page.

*heading off on the bus to watch Fulham Everton with Rich and Tom in brazenly non M day fashion. Good call by Rich.

Spoke to two people this week who separately told me this story.

As part of a project team under the Winterbourne View Joint Improvement Programme, they were tasked with finding good practice in assessment and treatment centres. Through examining paperwork they identified five places to visit. They went to one area, hooked up with a local commissioner and spoke to managers who confirmed that the provision was good. They then spoke to families and some dudes who told them a different story. They went to visit the unit and were shocked at what they saw. They were told by patients that they didn’t like the place, that the kitchen and laundry were kept locked, they were given the wrong clothes back and couldn’t have a cup of tea when they wanted. The team was shown round the unit and it was awful. At the end of the visit, the commissioner, who was visibly shocked, said it just goes to show how important it is to go and actually visit places.

The two people who told me this story said they assumed that the commissioner would act on this.

The unit was STATT. The visit took place in January 2013.

Rich made up this song when LB was younger.

“No standing upstairs,
Hold on tight there please,
Move on down the bus,
Move on down the bus”

It had a pretty irritating tune but made the dude chuckle every time (and believe me, there were a lot of times).

It sprung into my mind this morning when I read the Chief Executive (of the Oxfordshire Clinical Commissioning Group) report for the board meeting tomorrow.

Wowsers. From one Chief Exec to another. A collective move along now. Move on down the bus. Nothing to see here.

Well you can stop that bus right now. Because we have quite a few questions for Ian Wilson CBE, his team and the local authority. And we ain’t going away until we get some answers.

Lovely bus picture by Millie age 6 in year 2 is part of #107Days.. there is a bus picture album on our JusticeforLB facebook page if you want to add your own picture.

Hard to make much sense of things at the mo. This time a year ago was a bit of a ‘high’. A nightmarish situation with hope glimpses. “Three sections in as many minutes and now back to school??? Fanbloodytastic”, I wrote in a garbled, beyond hopeful and frazzled state.

A year later, two small Yorkshire villages have come together for a day of community action and collectivity involving (clearly delicious) homemade soup and friendship bracelets. Fund/awareness raising for #justiceforLB and Epilepsy Awareness Purple day.

Tomorrow promises to be hairtastic (that’s all I can say right now). And the remaining #101/107days involve an unfolding, brilliantly diverse mix of actions and events. Mark Neary continues his daily (powerful and hugely shameful) stories of Steven’s stay in an assessment and treatment unit. Today WiseGrannie cut through the ‘shame’ of nits with the super nit from the 60’s (or 70’s? Sorry WG). Daily LB bus photos are shared on twitter, @janeyouell continues running and recording her 107 kms and the letter for Connor written by Jill Bradshaw and Julie Beadle Brown from the Tizard Centre packs a punch and a half about the lack of effective action around continuing poor provision (and remains open to signatures).

Tiny, big, colourful, grey, staid, chunky, smooth, uncomfortable, funny, powerful, mundane, everyday, extraordinary, awkward, shocking, fun, definitely not fun, political, politically incorrect, simple, random, harrowing, personal, in your face, committed, joyful, loud, almost forgettable, colourful and whatever events/actions/markings are planned.

And we’re only on Day 6.

One of the hardest things around what happened to LB has been thinking, or trying not to think about, the time he spent in the unit. A black hole of unspeakable and immeasurable and incomprehensible pain. A particular space and time that smashes through and annihilates my fledgling efforts to concentrate on the good times and the complete love and joy LB both experienced and packed into his 18 years.

The #107days campaign, with its without  any recognisable “rules” set up has managed to  tip this set of days into a different space. One that (almost) makes us hopeful that meaningful change may happen. (We’re cautious here, but hey, why not?)

That LB, a dude who who loved buses, Eddie Stobart, the Mighty Boosh, watching lorries load on and off cross channel ferries, Steve Wright (let’s ignore the Simon Mayo thing) and so much more, has kick started a collective movement of outrage and determination for change, is pretty fucking cool.

Here’s to the next #101days.

I thought I’d better go through and ‘track change’ Katrina Percoid’s report to the Board meeting this morning, in case the Board are dopey enough to be taken in by it. My additions/comments in italics.

Chief Executive Officer’s Report

1. Investigation into the death of Connor Sparrowhawk [a dude and a half]

1.1. The external, independent review that the Trust commissioned after enormous pressure into the facts surrounding the tragic death of Connor Sparrowhawk in July 2013 was published on Monday 24 February 2014 and identified a number of failings that Connor’s death was preventable.

1.2. The Trust immediately [well after eight months of spin, cover up and prevarication] indicated publicly that it fully accepted all the findings of the report and once again apologised to Connor’s family and friends for its failings in respect of Connor’s death failing to provide Connor with proper care and failing to keep him safe from harm.

1.3. Connor Sparrowhawk was an 18 year old young man under the care of Southern Health’s Learning Disability service in Oxford. He was admitted to one of our in-patient treatment and assessment units (Slade House) in 2013. On 4 July 2013 he was found submerged in the bath on the unit and died in hospital shortly afterwards. Post-mortem findings showed that he died as a result of drowning, likely to have been caused by an epileptic seizure.

1.4. Since publication of the independent investigation report, the Trust has sought to be open, transparent and candid about this matter [*cough cough*] and has been open to approaches by the media. Shambolic Iinterviews have been given to BBC TV South Today, BBC Radio Oxford, the Guardian and the Health Service Journal. Written statements have also been provided to Community Care magazine, the Oxford Mail, the Sunday Telegraph and BBC Radio 4. The Trust was a no show on the ‘You and Yours’ programme and has yet to answer the questions put to it by the Oxford Mail.

1.5. Following Connor’s death the Trust has, of course [no of course about it], made a number of improvements to services including: · A strengthening of the local management team. · The introduction of advanced (and now mandatory) training for staff in the Learning Disabilities Division. · The introduction of an epilepsy care benchmarking process. We fully recognise that all these improvements are around the most basic of basic care.

1.6. In addition the Trust has been in contact with Connor’s parents. Staff expressed their condolences at the time of Connor’s death and the Trust has made contact with Connor’s mother (Sara Ryan) on a number of occasions [probably worth at this point having a quick recap of the interactions between us and the ‘Trust’]. The Trust repeatedly apologised for its failings in respect of Connor’s death once the report was published proving his death was preventable and sought to meet with Sara Ryan but to date Ms Ryan has declined all invitations to meet with the Trust Chief Executive or indeed any other Trust representative.all the meetings arranged with Sara Ryan and family have fallen through because the Trust changed the goalposts. 

1.7. We are very keen to meet with and engage with Ms Ryan. We understand that she is currently going through a painful, grieving process. [fuck right off you patronising bastards] On the basis of professional advice (because we ain’t half throwing a shedload of money at trying to wriggle our way out of this unfortunate episode), we have decided that it would be unhelpful to seek to engage with Sara [eurgh] through social media channels so we blocked the @justiceforLB twitter account and will continue to seek a face to face meeting whenever she feels that is appropriate and helpful. We will continue to monitor Sara Ryan’s social media activity and inform the family’s solicitor when we are ‘highly disappointed’ with it. 

1.8. Meanwhile, I would once again wish to [eh?] express my deepest condolences to Connor’s family and friends and to say how sorry I am that we failed Connor we breached the NHS constitution and failed to protect him from harm. 

1.9. The Trust began an important journey [Wha? You took over a known and documented faulty service and ignored it until the level of care was so appalling a patient died. A patient died simply because he was in your “care”] when it took over learning disability services that had previously been delivered by the Ridgeway Trust. [Distance…*cough*… distance]. We clearly have more to do to improve these services [no shit sherlock] and our overall plan for the modernisation of Learning Disability care for the people of Oxfordshire and Buckinghamshire…

…Yes! Our overall plan for the modernisation of Learning Disability care for the people of Oxfordshire and Buckinghamshire is covered elsewhere on the agenda.

What a pile of crap.

Three days into #107days. We have some beyond awesome events/happenings/actions lined up, with more people piling in every day with ideas and suggestions. It’s so spontaneous, lively and passionate we’re blown away. A visible indication that people are outraged by what happened to LB, angered by half arsed and sub-standard support for dudes like him and, most importantly, prepared to act in whatever way they can.

Anyway, my old pal Anne Townsend has been doing a superb job of snapping LB’s bus card in different locations in Vancouver. As I mentioned before, Anne and I met in 2004 at a conference in Vancouver. I arrived late at night to this amazing city and was struck by the kindness of the airport bus driver who went out of his way to give a young dude directions. She was clearly nervous but he got off the bus to make sure she knew where she was going. Yesterday Anne tweeted to say she’d met a lovely bus driver, photographed him with LB’s card but left her camera on the bus.

Within minutes up popped a tweet from TheWookieNutter, a drummer by night.

No way. No fucking way.

Then today, this.

Some serious bus related action. As there should be. An unlikely hero. And pure wondrousness.

I signed up to Day2 #107days to write something about happiness. Kind of a tall order in many ways. But then again, it ain’t. Which is pretty cool really…

Yesterday on the (we love) Phil Gayle show [available at 2.92 for 6 days] the Gman interviewed two DJs from Sting Radio about LB.

Paul Scarrott said “We had LB’s mum in and had a day of happiness on our radio show. We wanted to know about LB in the happy days.” And they did. It was a joyful two hours on Tuesday. And, as so often happens, it was the dudes who captured what really matters; the happy times.

LB may have been only 18 when he died, but he packed in about a billion years worth of happy times. We still hear new (and often hilarious) stories of his exploits from different people. We are always having “Do you remember when…? ” moments at home. Moments guaranteed to generate laughter. We have hours of home movie footage showing LB usually in a bundle of scrapping and playful siblings, completely surrounded by love. He had a contentment, for most of his life, that was peaceful, appealing and uncomplicated.

Some of our memories are on the pages of this blog. But most are in our hearts luckily and do a bloody brilliant job of generating little parcels of happiness.

To end, I’m going to re-post this short film that captures a snapshot of happy times with the dude. With a cracking soundtrack. It also includes the dude in his favourite outfit for about five years; an ELC police tabard, orange binoculars and the compulsory baseball cap (occasionally replaced by a disposable shower cap). I always smile at this picture, especially as he’s holding his shorts up so they don’t get wet. Love him.

An update. To Meeting Katrina Percy really.  Board papers for the meeting next week at Sloven towers are now available. Sigh. Pretty irritating to read I’m “currently going through a painful grieving process” (?) and, by inference, they are waiting patiently for this process to end so they can meet me. They seem to be trying to do a number on me as a slightly unhinged, random, easy to write off, isolated ‘mum’. Pah.

Bastards.

This got me thinking about power. And this foul process*. We don’t want to meet with KP (or any other Slovens). We’ve had (at least) two meetings arranged with them since LB died. They mucked about each time in a completely inappropriate way and we withdrew. To read (and hear on local news this week) a “we tried to meet with the grief stricken woman but she’s too disordered to do it..” line is pretty fucking crap.

Given the catalogue of their actions since LB died we’ve decided the risk of further pain (of sitting through fake, jargon laden, self serving words) outweighs ‘helping’ KP learn to do a better job. (Yep. Seriously. One of the several, random, almost ‘Carry on Spying’ type approaches trying to persuade us to meet her…)

In the newest board papers LB is first on the agenda. A lengthy section in the Chief Exec’s report (he’s certainly moved on from being a “service user” who died of “natural causes” tucked away in a paragraph on p84 of the papers last July). I wonder how much the ‘expertise’ they’ve brought in over the past few months to buff up their act has cost? Another Freedom of Information request on the pile to be filed. Oh to be an NHS trust with seemingly unlimited resources to respond to and fight off those pesky avoidable death cases. Unlike the families they crush in the process*.

KP’s LB coverage in the board papers includes the statement; they will “continue to seek a face to face meeting with me us when I we feel it’s appropriate and helpful”.

Well, to save you wasting any more time or effort on this, you can park it.  We don’t want to meet with you.

This position shouldn’t remove transparency or candour from the ‘process’. If a bereaved family don’t want to meet with trust members, for whatever reasons, the duty of candour should remain. We should be kept informed of what’s happening some other way. If someone is seriously injured or dies outside of an NHS setting, there’s no expectation that the person, or their family, are expected, encouraged (or pressured) to meet face to face with the perp (or their spokesperson) as a condition of being kept in the loop. We found out on social media yesterday that three members of staff from the unit are suspended. That is a pretty shite communication channel. Post Francis, and all that guff.

But then it’s all shite really.

(Well with glimpses of sunshine and potential for change, like the #107Days campaign, the legendary Phil Gayle and team, remarkable journalist Saba Salman and the beyond awesome team of Sting Radio DJs.)

*Understand fully we’ve been able to draw on resources to be able to make some noise here… We ain’t going to fight our dude’s ‘corner’ and then fuck off.