Raising a large glass of something…

Received a lovely Crimbo email yesterday which made me – blinking back those pesky tears – think, yep. We’ve rocked this gig. All of us. Here’s an extract from the email and some ‘highlights’ of the year:

I hope you all get a chance to reflect on your achievements this year:

  • real justice for Connor – forcing the NHS to acknowledge their failings and removing the CEO who set the culture that created so many problems for your family;
  • the prospect of real, meaningful change for so many other people within the NHS, in particular the families who’ll now expect so much more from the health service;
  • a new (albeit extremely belated) conversation about the lives of people with learning disabilities, with at least a path being set for how they can get closer to being treated with equality and respect.

There are undoubtedly many battles you’ll still want to fight, and plenty of people who need you to fight for them.  But I hope that over a large glass of something, you appreciate that you really, really are achieving Justice for Laughing Boy.

Jan: Campaigners and the gingers attend the Sloven Board meeting.
Feb: Jeremy Hunt meeting with Rich, Deb Coles and Andrew Smith, MP.
Mar: 12 Angry Women, Brighton, featuring ‘A Mother’s Song’ by Edana Minghella.
Apr: Mike Petter, Sloven board chair resigns; Simon Hattenstone wrote about LB in the Guardian mag; the CQC issue another warning notice to Sloven; revelations of Sloven financial irregularities.
May: Rebel governors meeting
Jun: Performance of A Child of Our Time, Warwick University; debate about Sloven governance in the House of Commons led by Suella Fernandes.
Jul: Talentworks  ‘Going Viral’ and exec salaries scandals hit the news.
Aug: Katrina Percy steps down from CEO into a made up post on the same salary.
Sept: BBC air Broken Trust, about Sloven failings; Tim Smart, interim Board Chair, resigns; Chris Martin removes the Talentworks website and pulls out of the Sloven contract.
Oct: Katrina Percy  resigns with a £250k pay off. The made up post remains unfilled; #JusticeforLB, Deb Coles and Charlotte HaworthHird win a Liberty Human Rights award.
Oct-Nov: #CaminoLB wondrousness.
Dec: Publication of the CQC Deaths Review; #JusticeforLB exhibition and day of celebration, Aviles, Spain; the GMC refer LB’s consultant to tribunal; the Health and Safety Executive appoint counsel to get specialist legal advice on complex points of evidence.


Here’s to LB and all the other dudes who were (and continue to be) let down so badly.

In search of rights and colour…

Came across some serious craftivism this evening. Mind and the Drunken Knitwits (among others) set too on the Radcliffe Camera. A welcome distraction from the continuing non action by those who should.

Left me thinking about plans for a bit of a #JusticeforLB shindig later this year (not quite confirmed) called In Search of Rights and Colour. Involving people, human rights, commitment, explosions of colour, love, brilliance, enthusiasm, stitching, passion, double decker buses and a pilgrim path.


Drops of brilliance.

A steal (of filthy lucre)…

Heard tonight, on the old grapevine (thank you grapevine) that Katrina Percy, Sloven CEO, was in Oxford last week. Shudder. Announcing the sale of Sloven Oxfordshire properties and the Slade House site where LB died. [Howl].

Sloven acquired, through a bit of a flaky process (reflections on the due diligence process here) the contract for providing services in Oxfordshire. A contract that apparently contained no clause around what happened to land/property if this organisation didn’t deliver and failed to improve services.Someone said to us, back in the day, that LB’s death and the subsequent shutting of STATT and John Sharich House on the Slade House site could allegedly make it easier to flog the site.

Apparently, when prescribed land/property use has failed for a two year year period, planning permission to do something different is a doddle. In effect, Oxfordshire Clinical Commissioning Group (OCCG) and Oxfordshire County Council (OCC) seem to have gifted premium land /properties to a bunch of ‘out of town cowboys’. Or, in current gameshow speak, Sloven have been given a steal (of filthy lucre).

Stupidity. Utter stupidity. Corruptness? Incompetence? Or all three. How could this possibly be?

An NHS Trust, swallowing up failing provision after a right royal roadshow;

<p><a href=”https://vimeo.com/38158627″>Katrina’s Ridgeway Message</a> from <a href=”https://vimeo.com/southernhealth”>Southern Health</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

“Superb, world class services” my arse. Evidence of failing to investigate hundreds of unexpected deaths across a four year period while merrily lining up the sale of prime land in a county 100 miles away from Sloven towers. Leeching much needed resources from Oxfordshire. Katrina Percy then  pitches up, around the two year anniversary of official failure, to announce the sale.

You are fucking kidding me?

We have strong local light shining gang which is something. My Life My Choice, our MP, Andrew Smith and the continued focus of BBC Oxford journalists. Andrew Smith wrote to OCC and OCCG in April 2013 expressing his concern about the obvious dip in staff morale after the Sloven take over of Ridgeway, and has remained deeply concerned at the potential sale of the site and loss of money to the county.

BBC Radio Oxford have been terrier like over this sordid tale, repeatedly airing the latest unfoldings and doing their best to hold Sloven and others to account. My Life My Choice met with the Sloven Board Chair, Mike Petter, and put some pretty hard hitting questions to him.

In answer to a question about the sale of Slade House, he answered:

“If it is sold by Southern Health, the money will go back into Learning Disability Services in Oxfordshire. If somebody else sells it, they might have a different idea.”

Bit of a funny answer about ‘someone else selling it’. But clearly stating Sloven will not be taking the money out of the county.

Earlier today I did a guest lecture for Oxford Brookes sociology students. I usually do a disability lecture (on their sociology of health and illness module). This year I was asked to talk about #JusticeforLB.

I rattled through Valuing People (2001), Valuing People Now (2008), Winterbourne View (2011), Winterbourne View Serious Case Review (2012) Transforming Care: a national response to Winterbourne View (2012), Confidential Inquiry into Premature Deaths of Learning Disabled People (March 2013) and Winterbourne View 2 years on (June 2013). All a complete and utter waste of resources. With pics of the kids at these key points.

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I then played The Tale of Laughing Boy.

There was a strangely eerie silence in the room. It happened in the Isle of Wight gig last week. And at the 12 Angry Women performance in Brighton the week before…

Pin drop stuff.

The students were engaged and got it. Sensible questions and bewilderment. I didn’t mention the Slade House site though. I stupidly believed Mike Petter.

‘Did you tell them LB had epilepsy?’

imageThe other week I had another interview to do with ‘LB’s case’. He ain’t a case but he’s become ‘a case’. Nearly three years on. Not to us but to officials around us. I don’t think he even qualified as ‘a case’ for Sloven initially. He was less than human. Less than a case. Like the other 330 odd people who died in their ‘learning disability care’ between 2011-15. Tossed aside without consideration. A two bit non human service user with a pain in the arse mother who blogged about her son’s experiences.

The interviewer at one point asked me

‘Did you tell them LB had epilepsy?’
Did you tell the staff in STATT LB had epilepsy?’

I eventually managed to breathe again, stop the tumbling tears and say, without swearing, that LB took daily medication for his epilepsy which we handed over to staff on his admission. Of course we fucking told them.

[I didn’t bother saying about the time we were phoned to ask if we had additional medication because they had run out, or that day in May when I told them, phoned them and emailed them to say he’d had a seizure they hadn’t recognised. Or that unknown to us, the psychiatrist went on to insist LB wasn’t having seizures…]

So. Yes. We told them… why the fuck are you asking me this?

I was embroiled in twitter exchange yesterday with Human Factor (HF) protagonists. An approach that focuses on learning not blame. I don’t know. I find the HF bunch a bit evangelical. And the whole idea that preventable deaths are ‘golden learning opportunities’ makes me feel ill. Unfortunately our ‘meeting Jezza Hunt’ experience was pretty depressing as he insisted a HF approach would lead to safety improvements across the board. Thereby improving the currently dire mortality rates for learning disabled people. No Jezza. Stop it. Just stop it. But he wouldn’t.

What is astonishing is the focus on protecting staff. Creating a safe space so staff feel they can tell the truth about what happened, about what went wrong. So that ‘golden learning’ can happen to prevent people dying in the future. Meanwhile, parents/families can be implicitly, or explicitly, blamed and crushed by the process.


Talking of which, 12 Angry Women premiered on Friday night at the Brighton Dome, packing a punch or ten. Edana Minghella, one of the writers, wrote a short piece about LB and composed a song; ‘The Mother’s Song’. Just astonishing. In a 10 minute piece, she wove together a combination of blog extracts capturing LB as a quirky, funny and much loved dude and ‘official’ commentary contrasting the brutality of what happened and what followed. It included the mermaids, Afghanistan, slavery, wanking, social media and toxic mothers.

There were three characters each of whom were performed brilliantly by Gem Bennington-Poulter (LB), Leann O’Kasi (me – bit odd saying that) and Richard Attlee (Generic Official Person). The latter was a mix of the coroner, Sloven, NHS England, the CQC, Monitor and Jezza rolled into one. You could hear a pin drop in the packed and boiling auditorium as the story unfolded. Tears. And more tears. And the song is simply beautiful.

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