Cameron’s wave and Smart evidence

Posted on June 3, 2016 by sarasiobhan

We’re having the bath replaced with a shower downstairs. In the garage that was converted into a bedroom/en suite jobby over 10 years ago with LB in mind. The bath that had the bath bell. [Howl]. I’ve not had a bath in nearly three years now so it made sense. It’s a small space needing a tiny sink. Not easy to find. Eurgh.

I ended up back online at the Bathstore earlier and a box popped up asking if I wanted help from someone. Yep. Thank you. Cameron appeared in the top right hand corner of the screen. Wearing a set of headphones and a type box under his pic. We started messaging about tiny sinks. So blinking exciting.

I shouted to Rich:

Hey I’m actually having a chat with a guy from the Bathstore…!

It’s not real.

Yep, he’s here with headphones on.

Yeah, but he’s not a real person.

He bloody is. Come and see…

[When Rich came in, the real Cameron was briefly replaced with a photo of possibly Cameron, while he searched for tiny sinks…]

It’s not real.

There he is look, he’s been looking for stuff.

He’s not live.

He is. Look! He looks down when he types….

He’s not really there FFS!!!

Cameron waved. We laughed. He didn’t have any small sinks.

We’ve been a bit anxious since the meeting on Tuesday with Tim Smart, interim Sloven chair. Rich’s blanket dismissal of Cameron reminded me of Smart’s dismissal of the Mazars review as ‘wrong’. Someone (NHS Improvement, NHS England? Jezza Hunt?…) seriously needs to make sure Smart is given the opportunity to ‘see the Mazars wave’. And for him to be prepared to accept, or at least engage with, the evidence shown.

Sigh.

Postscript: Perhaps unconnected, Rich returned to twitter this afternoon and sent his second tweet in five years. Quality rather than quantity he says.

Of course you can cry…

Posted on June 2, 2016 by sarasiobhan

Tim Smart, interim Sloven board chair, met with My Life My Choice (MLMC) champs yesterday. The meeting is described in detail by Kate here [recommend reading this because I muse in a piecemeal way below]. Peculiarly, it was difficult to know what to make of it all.

kate

Smart began by giving a heartfelt apology to our family and said there was no doubt we had been failed completely by Sloven. After nearly three years [howl] of non, fake or mealy mouthed apologies prised out of the Sloven directorate this was the real deal. Deeply moving and very much appreciated. He made it very clear how important it was to him to make sure there were improvements at Sloven. He’d been deeply upset when he saw the tv coverage of the extraordinary board meeting in January and couldn’t imagine if it had been his son who had died.

Sloven have, till now, repeatedly failed to say sorry. They have said sorry for our loss, for the upset we feel. They have let us know they will take the opportunity to apologise to us at a particular meeting (can you imagine?) They have bypassed us altogether and bunged the ‘apology’ on their website. Smart nailed it with openness, honesty and compassion.

Shaun and Jackie then asked a series of questions.

Slade House was a bit of a slippery topic. An assurance that the future of the site would be discussed in public with an acknowledgement that he probably/possibly wouldn’t be chair then. Allowing similar wriggle room to previous chair Petter; if we sell it the money stays in Oxon but if someone else flogs it type stuff.

The final question (“It’s a nasty one I’m afraid Tim”) was about why the CEO is still in post. Smart’s response was around gathering an evidence base to make a judgement around the potential removal of any board members. Fair enough. He then said none of the reports about Sloven laid the blame at Katrina Percy’s door. Bit odd. The Mazars review explicitly identifies board level failings. And failings schmailings are ultimately the responsibility of the chief exec. Mmm…

Shaun asked if Smart could continue to attend these meetings even if he was no longer board chair as he didn’t ‘BS’ them. Smart was visibly moved by this question. He said it was one of the nicest things things that had ever been said to him and he was at the risk of becoming emotional.

“You can be emotional Tim” said Shaun, cheerfully. “Of course you can cry. I’m always crying… ”

Another one of those moments when I’m just in awe of the brilliance of the My Life My Choice team. Keeping it real. Human. With an extraordinary ability to ask tough questions, offer challenge and remain encouraging and supportive.

Then, into this emotional space, and I can’t remember how it came up, Smart said very brusquely he hadn’t read the Mazars review and wouldn’t “because it was wrong”.

Blimey. One of those cartoon screechy brakes moments. A quick photo and Smart and I left for a brief chat. Outside, he said he had read the Mazars review but was dismissive of talk of thousands of deaths in the media [and clearly still dismissive of the review itself]. He told me a story which I didn’t get then went off to get a cab.

So. Where are we at? What does any of this mean? I’ve no idea really.

Vague, half formed, thoughts:

Tim Smart is genuinely sorry and shocked about what happened to LB and the treatment we have experienced.
He recognises (some) obvious and sustained failings in Sloven provision.
He prides himself on his integrity, honesty and straightforwardness while remaining closed to actually listening or engaging with some of the evidence.

L1019582-4

I went back to work feeling upset and pretty low.

Oh Mencrap… really?

Posted on May 30, 2016 by sarasiobhan

Hearing rumours that Mencrap have lined up a ‘Five years since the Winterbourne View Panorama film was screened’ media thing. Tomorrow.

Sigh.

Really?

What do they actually do…? (Serious question.)

Brilliant journalism uncovered scandalous, horrific, abusive practices in a (privately run) assessment and treatment unit in Bristol back in 2011. This generated a moment that led to a mass signing up of pretty much everyone/organisation connected to learning disability in the UK. To what turned out to be a combo of earnestness, pomp, ridiculous bureaucracy, ultimate pointlessness and ill thought out promises. At enormous cost.

The Winterbourne View Joint Improvement Programme (WVJIP). [Shudder].

A programme that gradually petered out into a Bubb’s breakfast. The 50 odd signees remaining largely silent on their collective failures.

We’re left with a handful of dedicated and deeply committed staff at NHS England sticking their fingers in various life dykes with the support of pockets of dedicated and deeply committed groups/individuals across the country.

Pretty much the same number of people continue to (not) live impoverished (and brutalised) lives in assessment and treatment units across the country as there were in 2011. Many, many more are leading impoverished (and brutalised) lives in independent supported ‘homes’. Some of which are run by Mencap.

Winterbourne View has remained the cultural touchstone for repeated and deeply serious failings in learning disability provision. Why? I suspect partly because it suits Mencap. A quick win for (vacuous) media coverage. And partly because it was run by a private (not NHS) provider.

What was exposed at Winterbourne View was barbaric. The publication of the Mazars review in December 2015 flagged up so, so much worse. The systematic ignoring (or worse) of the preventable deaths of learning disabled people by an NHS trust. Less than 1% of unexpected deaths were investigated.

Less than 1% of unexpected deaths were investigated…

The response of Mencap to the Mazars publication? Puffery about Mencap greatness. Shockingly and deeply inappropriate.

*Mencap’s repeated and self serving focus on ‘Winterbourne View’ further demonstrates the gap between Mencap and the people/families they claim to be the voice of. Learning Disability England is being launched on June 14. Reclaiming ‘voices’. Thank fuck.

An inhumane battering

Posted on May 24, 2016 by sarasiobhan

I came across this letter sent to some disability activists by an Oxon County Council commissioner again today. Took my breath away. Again. A vicious and ill informed assault. Why?

I’ve been repeatedly vilified as LB’s mum. By senior (white, middle class) people who should not be working anywhere near health and social care. To save their own backs. Their salaries. Their status. Their fakery around their sense of who they are… In a sustained and nasty way.

Just one section of the commissioner’s letter:

OCC Commish letter

[Here’s one of the posts I wrote a week or so before LB died: Am I mainstream now, Mum? [Howl]]

Have to say, if any OCC or Sloven staff member wants to suggest to my face that I was ‘reluctant to have LB back’ I’ll not be responsible for my actions. I loved that boy more than life itself. We all did. And always will. He was the family rule breaker. The comedian. The gentle and funny guide to different ways of living and being, with a wisdom we didn’t always recognise.

He was a fucking school boy…

Can you begin to imagine what it must be like to read the above extract? From a letter leaked to you a year or so after it’s written and circulated to who? To know you are being bad mouthed in all sorts of NHS/social care circles because some jumped up Trust, whose eyes were bigger than their bellies, were able to feed off a weak Oxon joint commissioning set up. Take over the Ridgeway. Leave it to fester…And your child drowns alone, locked in a bathroom, as an outcome?

Don’t you ever suggest I was reluctant to have LB back. If you do, have the guts to say it to me. Not circulate it in sneaky, sordid communications among NHS/LA corridors and wider. And to anyone who receives such tripe in their everyday work…. You can always call it out, you know. Shake off the stupidity, malaise and laziness and recognise/acknowledge that families aren’t the beasts they are painted to be.

As Tom, 16, said; “When a mother tells you she’s sure her son’s had a seizure, he has.”

You stupid, self serving, arrogant, barbaric fuckers.

Dirty dealings and the Sloven gravy train

Posted on May 23, 2016 by sarasiobhan

I wrote this filthy lucre post two months ago. About the Slade House site and rumours that Sloven are selling it and heading back down south with millions in their grubby (and negligent) paws. With the naivety (and relentless optimism) that has characterised #JusticeforLB though, we sort of believed Mike Petter’s (written) assurance to My Life My Choice:

“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.”

At the time it seemed odd to say ‘if somebody else…’ Mmm.

Naivety and optimism has taken a kicking tonight with the following unravellings and realisations:

DocHawking tonight mentioned sale of the land by a private company; a sneaky bit of asset transfer which absolves Sloven [only in the eyes of devilish monsters] of ‘selling it’ themselves.
Petter has gone.
The Sloven board meeting tomorrow has a secret agenda item Declaration of Surplus Land/Property.

These, in turn, leave us wondering (again):

Why did Sloven want to acquire the known to be failing services run by the Ridgeway Partnership in 2012?
Why did they do zip all about improving these services or even being visible in Oxfordshire after the contract exchanged hands?
How much of a draw was the chunky Slade House site/land next to a recent development for Oxford Brookes student accommodation, within the Oxford ring road?

slade

Oxfordshire has had to endure failing learning disability services for over three years now. It cannot be possible that the resources the county have can be pillaged by a bunch of chancers. (Aided by the stupidity of Oxfordshire County Council and the Clinical Commissioning Group). Nah. No fucking way.

A very British killing…

Posted on May 21, 2016 by sarasiobhan

Just started reading A very British Killing by Andrew Williams. About Baha Mousa, a hotel receptionist, killed by British troops during the Iraq War. A deeply horrific read for so many reasons. In the preface, Williams writes:

The underlined sections could have been written about our experiences/the experiences of other families. Substituting civilian and military commanders with NHS Foundation Trusts, NHS England, NHS Improvement and the Department of Health. Light on apologetic, heavy on disdain. With the Mazars review demonstrating a more systemic and possibly less chaotic approach to the initial violence/harm people experience (not read the book yet so just guessing… sigh).

For three years now, the failing actions of the Sloven exec have been made visible. And they still don’t ~~have to~~ get it. Cosseted in a ‘safe space’ woven with overlapping strands of the Health and Social Care Act (2012), the erosion of accountability and the administrative grotesque, the bureaucratic apathy and institutional failure Wilson discusses, and more.

An example of the impermeability of this space. The Sloven circulation of the briefing about this blog, a day after LB’s death [howl] and the sharing of this unspeakably vile document on these pages, wider social media and during LB’s inquest and wider social media. This exposure, this uncovering and publication of truly toxic action by an NHS Trust would surely lead to censure, to serious reflection and action at board level (and higher) about the priorities/actions of the Trust..?

Nah. Not a dicky bird. Instead, almost three years later – three years littered with failed CQC reports, deaths, critical inquest determinations and no real action – the board papers for the meeting next week state:

‘The Non-Executive Directors challenged whether the ability to respond to external reports and reputational issues should be the the Trust’s highest risk.’

Reputational risk remains top of the (inspirational) leadership board.

Having felt particularly ground down over the last few weeks/months. I’ll dredge up some optimism droplets and end with three reflections;

At least some of the slumbering non executive directors are (at last) waking up…

There will always be memories of the rebel governors and day trip to the Lyndhurst Community (involving a ‘well travelled jar of pickled onions’ with the My Life My Choice crew.)

And Andrew Williams – who made these links between Baha Mousa, LB and others – is currently making his way through the bundles from LB’s inquest.

1000 days

Posted on May 20, 2016 by sarasiobhan

As we get to towards the end of the third year since LB died my rage is reaching levels I had no idea existed. Probably in direct proportion to the mountain of shite that continues to unfold at Sloven towers. Despite enough evidence to sink the Harmony there is still no action.

Sloven, and everyone else who should have acted and hasn’t, has now stolen a further thousand days of our lives. 1000 days… during which we’ve been unable remember LB properly.

I hate the word grieve. I don’t want to ‘grieve LB’. And I’ve a serious dislike of ‘models of grief’. I want to think about LB. I want the space to remember, in intricate detail, everything about him. His love, laughter, being, touch and smell. His sense of humour. His astonishing, duck like hair. His happiness, thoughts and reflections. His dislike of Simon Mayo and love of all things human rights. But I can’t.

I’m enraged that, like so many others, the remaining pieces of our hearts, those pieces that somehow hang in there despite the harrowing and incomprehensible death of our dude, are battered beyond recognition by state actions and non actions.

Inexcusable. And barbaric.

1000 days… And no end in sight.

Rebel engagement

Posted on May 18, 2016 by sarasiobhan

People, patients, self advocates, families, picnics. A crowd sourced room (after Tim Smart pulled the plug on the extraordinary board meeting with a threat of legal action).

An opportunity for the Council of Governors to meet the public and listen. They all had the date in their diaries after all…

Peter Bell, Arthur Monk, John Green and Richard Mandunya we salute you.

The message

Posted on May 4, 2016 by sarasiobhan

My blood chilled, 20 seconds or so into the message left on my phone at work, when the caller seamlessly tipped from being sorry that LB died to calling me a vindictive cow. And didn’t hold back from sticking the boot in.

Another day. Another Sloven related failure.

The kids, love em, and their cousins/mates, were instantly outraged, enraged and upset. Their united, supportive and vocal position, that this is so fucking wrong, continues to be one of the lights shining through this complete fuck up. Combined with widespread condemnation by so many others.

The call is vitriolic, nasty and beyond inappropriate. But it’s simply part of a set of improbably, inappropriate, nasty and worse responses we’ve endured since LB died. Evidence of a system in which defensiveness, bullying and family crushing flourishes.

Just a few examples:

The letter from Katrina Percy.

The Dr Crapshite stuff and mother blame.

The Oxfordshire County Council commissioner’s letter to disability activists

The Sloven briefing to David Nicholson…

This afternoon, Luciana Berger tabled an Urgent Question in parliament about Sloven. There was anger, much sense and serious concern demonstrated by those present. (Not Burt). John Bercow concluded the debate stating that Sloven need to see the Hansard documentation of the debate. Good.

But not good enough.

We’re beyond weary. Bouncing between extreme love for the likes of Luciana Berger, Norman Lamb, Paul Lelliott and others at the CQC, Andrew Smith, Deb Coles (and the unfailing support and contributions of #JusticeforLB campaigners). And the pin drop pots of non action wedged within the Department of Health, NHS Improvement and NHS England.

Listening to this message was unspeakable. Reading the documents listed above was unspeakable. I don’t know how much more unspeakable we are expected to endure. We were, hilariously, stupidly, copied into an exchange about the governors response to us in which a Sloven comms person advises the governors to ‘soften the tone a bit’. Just astonishing.

Why don’t you all re-read Mark Aspinall’s emergency motion and recognise your craphole, seedy actions for what they are. We ain’t the problem here. As much as it makes you feel better to think so.

In the spirit of the openness of the campaign, I’ll just say you are all a fuckingpileoftosswankpisspotfuckscummerybastards.

Media melange and a missing CEO

Posted on April 29, 2016 by sarasiobhan

24 hours. The Today programme, BBC Five Live, BBC Breakfast News, Channel 5 and ITV News, Community Care and Oxford Mail. No words (other than appreciation for thoughtful and engaged interaction from all, and some photo captions).

Oh. And no sign of Katrina Percy.