The magic wand

Posted on by
11

Friday afternoon I left work mid afternoon and went to the cemetery. The outcome of the ‘settlement’ reached on Wednesday was impossible to make sense of. I just kept crying. On the bus home I received an emailed letter from Lesley Stevens (Sloven Medical Director). About the unethical study they are conducting into families experiences of their death review process. The letter inviting people to take part is being reviewed and revised by three ‘service users’, the Health Research Authority have said no ethics approval (or ethical thought apparently) is necessary and Stevens defends the use of the questions being asked of bereaved families (e.g If the review process had been perfect – if it had been everything that you would want it to be, what would it have looked like for you?) with reference to the “Magic wand” question:

“if you had a magic wand, and could have three wishes granted…” (see Verma, N., (2014) Appreciative Inquiry: Practitioners’ Guide for Generative Change and Development) and the standard Solution Focused “miracle” or “future perfect” question: “Suppose a miracle happened tonight?” (see Jackson & McKergow (2002), The Solutions Focus: The simple way to positive change).”

magic wand

I read the letter. Blinked. Read it again. And bizarrely (after all this time) realised that Lesley Stevens and a sizeable chunk of the Sloven board will simply never understand (or refuse to understand) that LB died. Or engage with what #JusticeforLB has revealed over the past three years. The burying of the agreed public statement in a PDF, off a link from the Sloven news page, demonstrates the same old, same old, contempt and fakery despite an apparent “successfully mediated settlement” reached on Wednesday. A point not lost on others…

mills tweet

This afternoon I sorted out some photos for Open Democracy who are going to publish the public statement as a word document so it’s permanently searchable online. [A PDF is not…]

As I did, I thought again about Steven’s reference to “a magic wand” or “a miracle” happening. And wondered [again]… how can these people possibly be in charge of an NHS trust? Still.

magic wand 2

L1019735.jpg

 

The settlement

Posted on by
9

Yesterday was mediation day. As part of an action against Sloven about LB’s right to life being breached under the Human Rights Act*. The date was agreed a while back and papers were to be submitted to the mediator seven days before. Sloven submitted nothing. We got more tense the closer it got and by Tuesday night, Rich and I were pretty much in pieces, firing off random, belligerent emails to our (wonderfully calm) solicitor and pacing round the house. Necking wine.

I can barely remember the journey to London first thing in the morning. My rage at what happened to LB, what we’d been put through by Sloven and dread of the day ahead consumed me. Rich listened to music.

L1019667

The meeting was held in Doughty Street Chambers and there were three rooms. One for us and our legal team, one for the mediator and one for Sloven and their group (of several people). For the rest of the day, we sat in a big, very warm meeting room with a view, tea, coffee, water and wifi. The mediator came in and out. Our legal team went out and came back in. The sun went in and we waited.

 

At 2.30pm, the Sloven debate started at Westminster Hall. We watched parts of it in between discussions. I half watched the rest of it with the sound off. Following the tweets and texts from a mate. Sloven were getting a deservedly intense and critical panning. On the floor below and over to the left of us, their Chief Operating Officer, another staff member, their solicitors, a partner from their solicitors firm, a barrister, and a NHS Litigation Authority bod sat.

L1019705

Mid afternoon there was an enormous downpour. A get people off the streets type downpour. No umbrella could withstand the ferocity and that amount of rain. The atmosphere in the room pretty tense as deliberating and discussion continued. Andrew Smith, MP, was clearly articulating the depth of Sloven failings on the muted screen.

L1019696

Eventually, agreement was reached. Seven hours after arriving we left the chambers and went for a drink in the pub across the road. In sunshine. It was hard to make any sense of what was agreed. A good outcome apparently. I just felt deeply sad and a bit odd.

L1019710

There are two parts to the settlement.

I’ve woken up feeling as sad and odd as I felt yesterday (with a layer of new exhaustion). The statement is very clear and, given everything that’s happened [he died...] is a form of ‘vindication’, if that’s the right word, without meaningless apology. The money? It was never about money. We’ll talk about that when the kids are all here together in July.

One of our lovely nieces, Clare, messaged earlier asking ‘What does it mean for the campaign?’

Nothing really. This human rights part was never part of the Connor Manifesto so it’s business as usual. Just one horrible, ‘gruesome’ as someone put it yesterday, process done. None of this should have happened.

*We had to make sure the judge could not look back, if the ‘case’ reached court, and say we had turned down any reasonable ‘offer’. If s/he thought we had, we ran the risk of having to pay Sloven’s costs and (I think) being fined.

Cameron’s wave and Smart evidence

Posted on by
3

L1019607

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!!!

 

bathstoreCameron 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 by
9

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 by
17

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.

 

It ain’t what you do…

Posted on by
6

Sad times in the Justice shed. The light, freshness and candour anticipated by Tim Smart’s appointment by NHS Improvement has been akin to the unleashing of a new Grange Hill bullyboy in the Sloven hood. Threats of legal action against governors and ropey engagement with patients and families at the board meeting so far. Sigh.

The latest failing (inviting bereaved families to take part in a flim flam study without ethical consideration or thought) is another example of a leadership who know nothing about leadership. I had a long convo about the ‘study’ with Flash Gordon, Chief Operating Officer, Director of Performance, Quality and Safety and short straw drawer when it comes to talking to irate people late on a Friday afternoon before a bank holiday weekend.  He was as slippery as a slippery thing insisting it wasn’t “research” just talking to a few families. Brain melt. He eventually agreed to put it through their ethics process.

We, like so many others, remain baffled that the CEO and a chunk of the Sloven board haven’t resigned or been removed given everything that’s unfolded. There couldn’t be a clearer evidence trail of repeated failures over years. Of harrowing disrespect, contempt and disregard for human life.

And still nothing…

A short film recirculated on twitter yesterday. Around what ‘makes a top CEO’. Starring Mike Richards, Chief Inspector of Hospitals, CQC, the then CEO of Monitor, David Bennett and, er, Katrina Percy. Yes. Really. This was published online in December 2015, shortly before publication of the Mazars review. Truly extraordinary. But points to the secure position the Sloven CEO holds. The CQC and I’m sure Monitor were very aware of the content of the Mazars review by late summer 2015. You would think, given the scandalous content of that report, the Sloven CEO would not have been selected to talk about the qualities of a ‘top CEO’.

Nah.

Back in February 2016 a report was published by The independent Commission on Acute Adult Psychiatric Care, led by Lord Nigel Crisp. This report included recognition of Sloven’s mental health work. Eh??  Recognition of good work?  Sloven were, of course, quick to put this on their news pages:

Southern Health’s development of “care navigators” and involvement of patients with mental health needs and carers in decisions about their care have been highlighted by Lord Nigel Crisp, former Chief Executive of the NHS.

Given the latest (May 16) in a relentless series of critical inquest determinations  around failings in mental health provision, it seems that Crisp was listening to the Sloven talk rather than seeing evidence of the walk. Always a mistake with this bunch. The patient who spoke powerfully at the rebel governor meeting a week or so ago was not receiving anything remotely approaching good care and clearly hadn’t seen whiff of a ‘care navigator’. And the recent CQC inspection clearly identifies sustained failings in care.

Again, odd that Sloven was highlighted in the report. Surely Crisp had heard of the Mazars review and knew there were serious question marks around the care provided to mental health patients?

Nah.

Turns out he works with Katrina Percy’s dad though.

Watching the consultants

Posted on by
9

After Tim Smart*, new Sloven board chair, astonishingly announced at Tuesdays meeting that he was commissioning an independent review into Sloven board performance, Chris Hatton totted up the Sloven spend on external consultancy for the last three years. Over £8 million. £8 million… Wow. Given they continue to fail deeply, they really ought to get this dosh refunded. (And stop commissioning consultants.)

Yesterday I received a private and confidential letter from our (least) favourite medical director, the hapless Lesley Stevens.

image (30)

Astonishingly crass but I’d expect nothing less from Sloven, who wouldn’t recognise a bereaved family if they sat in the middle of a funeral service. No thought for the poor buggars receiving this letter, just Sloven, Sloven, Sloven all the way.

Still, at least they are doing some research I thought. And went on to read the credentials of the independent researcher. Ah. They ain’t independent. Or a researcher really. They worked for Hampshire Partnership Trust (predecessor to Sloven)… Sigh.  I emailed to find out more details about the study.  Turns out it isn’t really a study. It’s a ‘service review’. No real details are available other than the (non) independent (non) researcher will ‘interview family members that come forward and to write that up in a report with recommendations on how the Trust improves the process’. Nothing like a bit of rigorous and ethical study. Nope. Nothing like it.

In the absence of a protocol or study design (just extraordinary) I was sent the interview questions. These, too, show a complete lack of understanding of the focus of the ‘study’. Reading them, for the first time in years I appreciated ethics boards. The final question is a cracker:

reviewCan you imagine asking families whose relative has died in Sloven care this question? We ain’t talking about an evaluation of the Royal Mail complaints process FFS. If it had been everything that you would want it to be…?

My jaw is almost permanently clamped shut at the lack of anything remotely human these muppets do these days.

Now, for those mysterious callers and poison pen letter writers among you, I ain’t being picky, vindictive or vexatious here. This is a public sector body squandering millions on shite, continuing to ride roughshod over patients and families while openly failing. It is simply wrong. When I think of the lengths Sloven went to trying to bury the Mazars review, one of the most important, critically analytical and robust studies conducted within the context of the NHS, and yet they will trot out this non ‘study’ as hard evidence of whatever suits them in a few months time… No questions asked. No scrutiny. Nothing.

Not only that, they will very likely have caused additional distress to bereaved families in the process. Another ill thought through and clunky non action plan.

Stay classy, Sloven. As always.

*Not an auspicious start for Mr Smart, sadly. Further details of his bully board behaviour here.

An inhumane battering

Posted on by
15

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 by
8

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:

  1. 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.
  2. Petter has gone.
  3. 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 by
4

51cKuFMMt-L._SX324_BO1,204,203,200_

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:

wilsonThe 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:

risks‘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…

board

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.