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.