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. 

Those bloody tears won’t stop today. The old tap effect is back with a vengeance. A year ago today we asked to get LB admitted to a small, specialist hospital a couple of miles from home for “assessment and treatment”.

He never came home.

Driving him to the unit was so sudden, so extreme, I’m not sure he even shut his laptop before we left home. Or said goodbye to Chunky Stan. It was a short term measure. A few weeks at the most…

It’s almost impossible to breath. The intense pain, the what ifs and the what.the.fuck? He wasn’t even ill. How the hell could he die? It’s completely incomprehensible*.

The #107day campaign is a good distraction. It’s remarkable to see so many people pitching in and supporting the campaign. Truly remarkable. And yesterday was a bit brighter. I spent the afternoon at Sting Radio on a show dedicated to a celebration of LB’s life. We chose five of LB’s fave songs at the weekend. The DJs asked questions about LB among news features, top 10 love songs and rock songs and a debate about whether independence for learning disabled people has improved. The genuine welcome, warmth, empathy, outrage and complete understanding the DJ dudes demonstrated yesterday was a tonic.

The songs:

1. Devine Comedy National Express
2. Gorillaz Feel good, inc.
3. Beatles Here comes the sun
4. Dexy’s Midnight Runners Geno
5. Keane Bedshaped

Thanks guys. You rock and I had a ball.

DJ Superhero reading through his script with DJ Sporty and DJ SweetDawn in the background

DJ Politics, DJ Sporty, Tom and DJ Master of Rock with the Oxford Mail photographer in the background

DJ Stingray Paul, DJ G-Myster, DJ SweetDawn and DJ Emma

DJ Superhero, DJ Horror, Tom and DJ Politic. And Geneva. Minus her head. On her last show with the DJ dudes

* We found out from the exceptional Saba Salman tonight that three staff are suspended. Sloven and NHS England were unable to tell us this.

We’ve been asked what  #justiceforLB looks like by various people over the past weeks. Tonight we received a reminder from the real David Nicholson’s office that we said we’d email this to them. A very cool and reassuring reminder.

We agreed we’d email our list during the meeting last week. But it seemed a bit too enormous to knock into ‘proper’ shape, too scratching at the surface, too insignificant really considering that LB died. Howl. And we were/are too weighed down/crushed and battered over years by the baseline level of shiteness that exists in learning disability provision to really come up with a meaningful list of anything.

But, hey, let’s run with our fledgling list (already emailed to NHS E towers). In advance of the launch of the #107days of action campaign (to coincide with the date LB went into the unit and the time he spent there), here’s our starter for 10 for actual change (and no more talk/lessons learned) to improve the lives of learning disabled dudes:

What does #justiceforLB look like? 

For LB

• To achieve all of the below
• Staff, as appropriate, to be referred to their relevant regulatory bodies
• A corporate manslaughter prosecution brought against the trust
•  Meaningful involvement at the inquest, and any future investigations into LB’s death, so we can see the Trust and staff account for their actions in public

For Southern Health and the local authority

•  Explanation from the CCG/LA about how they could commission such poor services
•  Reassurance about how they will ensure this cannot happen again
•  An independent investigation into the other ‘natural cause’ deaths in Southern Health learning disability and mental health provision over the past 10 years

For all the young dudes

• A change in the law so that every unexpected death in a ‘secure’ (loose definition) or locked unit automatically is investigated independently
• Inspection/regulation: It shouldn’t take catastrophic events to bring appalling professional behaviour to light. There is something about the “hiddenness” of terrible practices that happen in full view of health and social care professionals. Both Winterbourne and STATT had external professionals in and out. LB died and a team were instantly sent in to investigate and yet nothing amiss was noticed. Improved CQC inspections could help to change this, but a critical lens is needed to examine what ‘(un)acceptable’ practice looks like for dudes like LB
• Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes
• An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided rather than add on, ad hoc and (easily ignored) specialist provision
• Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society

And, if anyone would like an example of how the final point can be achieved, tune in to the Phil Gayle Show on BBC Radio Oxford where he, and his team, regularly cut through the crap, focus on what is important and have learning disabled people as guests on the programme to talk about what is important to them.

As it should be.

An anecdote. From yesterday:

“I remember when LB came to France to watch Myfi in the gym competition. ‘Myfi’s going to win the gold, Krissy’, he told me seriously.’Well, maybe LB, maybe..’ I said to him. Anyway, when it was her turn you should have seen him. He was transfixed. He watched her really intently and they all looked the same really, the five girls. But he watched her and she won. And when it came to the clapping? Well, you couldn’t ask for a better supporter.”

It’s late. Probably too late to write this. Rich has gone to bed. After an evening of recounting, revisiting and rehashing the same stuff we’ve now been talking/howling/raging and weeping about for eight months. We talk at home, at bus stops, in the supermarket. The most extreme stuff imaginable. In London yesterday, Rich said to someone in a cafe who asked what he was doing that day ‘You wouldn’t believe me if I told you’.

Extreme spaces and extreme non engagement.

LB, a fit and healthy, quirky, remarkable, self assured and beyond loved 18 year old entered an NHS hospital nearly a year ago now and died. Through proven neglect. This isn’t ‘news’. This isn’t well known (well outside of a grassroots campaign, #justiceforLB, that deserves a spotlight of its own). We’ve endured brutalisation through the actions of the “Trust” (Sloven) and, as the meeting today with NHS England staff demonstrated, a broader carelessness, disregard and disrespect. A simply ‘doesn’t matter’ attitude.

If LB hadn’t been learning disabled, his death would have provoked instantaneous outrage and engagement. We’ve lost count of how many ‘atrocity stories’ since LB died that have been headline news. We’ve fought like fucking billy-o to get accountability. We managed to get an independent investigation into his death commissioned and, with a fight, published. A report that categorically states that LB should not have died.

LB should not have drowned in a bath in a hospital. In a unit with four ‘specialist’ staff and five patients. He was diagnosed with epilepsy. He had documented increasing seizure activity as a consequence of the medication change imposed by the clinician responsible for him. It was recorded that he was sensitive to medication change. We told them he was having seizures when he was in there. Knowledge they chose to dispute.

Why would you dispute seizure activity in someone diagnosed with epilepsy, sensitive to medication change, when their family flag up seizure activity? Where in the the fucking curriculum/on the job experience does stamping out any sniff of a known risk feature?

And yet, the CEO of this shoddy, beyond unfit for purpose outfit, was interviewed on local radio a week or so ago, bleating about the ‘false positives’ that led to another CQC inspection fail. Those pesky selective false positives that led her, and her board, to assume they were providing adequate (we ain’t even reaching for good here) care? Sheesh. What is a Chief Exec and her board to do in the face of such insouciant staff actions?

Yowsers. This is horrendous. At the very least the relevant bodies must have collectively swooped in and sorted things out. A young man drowning in the bath in a specialist unit? Blimey. At least they must have supported the family in every way possible. The various bodies must have chucked in everything possible to ease the intense pain this family have experienced.

Yeah.

…

Another meeting with NHS England this afternoon. This did not go well. They wanted to talk pathways and processes. We wanted to talk people.

“Have any staff been suspended?” asked Rich.
“Yes”, said NHS E (2)
“No” said NHS E (1)

This was not a good start.

It got worse.

“Were the patients in the unit given counselling or support after LB died?” I asked. “It was a tiny unit so they must have witnessed what happened. And LB had a good relationship with couple of them. Were they supported?”

Silence.

“Were their carers/families contacted and told about what had happened?”
“Sloven did put something on their website because, as you know the unit was closed to new patients after the CQC inspection…” (This website piece includes a sentence about how ‘staff are being supported through this [improvement process.)

Rich asked them what had actually been done rather than what potentially might happen. Nothing.

Rich left.
And I left shortly after.