Monthly Archives: January 2015

Reflections on reflections

Posted on by
11

Oh dear. Some despondency reached the Justice Shed today. There were a few twitter threads of discussion around the fact that no disabled people were on the #LBBill panel at the Humanities gig at Manchester University.

Nope. There weren’t. Should there have been? Good question.

#JusticeforLB and the #LBBill have been organic, unscripted, slightly disorganised campaigns. Everyone involved is a volunteer. There’s no structure, no resources (other than goodwill which has been available by the shedload) and no agenda (other than effective change). Most importantly perhaps there are no vested interests.

Many #JusticeforLB campaigners are disabled. People have contributed in all sorts of ways. An open and transparent campaign. Anything and everything goes (just browse #107days to delight in this). A mix of determination, commitment, passion, humour, fear and fearlessness, and a refusal to be drawn into meaningless, empty and fake talk about what is about to change. The amount of hours and (crowd sourced) skills and support provided for free impossible to count.

This is in contrast to the spectacular failure of other efforts to make life better for learning disabled people. The National Audit Office are publishing their investigation into the ‘dread to think’ sums of money squandered on the Winterbourne View Joint (Non) Improvement Programme on Wednesday. This should make for an interesting – finger nails on the blackboard – type read. Big charities and other organisations have also talked the talk at length, across the last three or four years, within the stifling constraints of existing structures, organisational layers, an eye on salaries and the awkward position of being both campaigner and provider. Tripping over in jargon alley, distanced from the experiences and engagement of learning disabled people and their families, apart from the often tokenistic involvement of one or two disabled people, hands over ears to avoid properly listening.

So should there have been a disabled person on the panel on Monday? Of course there should. We’ve met with disabled people’s organisations. Cracking easy read bill resources are available. There have been events organised across the country focused on getting feedback from learning disabled people. Passion, commitment and effort have generated a mountain of feedback waiting to be analysed and fed into the next version of the Bill.

That the panel didn’t include a disabled person shouldn’t be a negative reflection on the campaign. It should raise questions, discussion and reflection on how meaningful involvement can happen within the context of no resources, little time (or structured organisation?) and an antipathy to tokenism. And what this means about ‘inclusion’ more generally.

As well as a shared commitment to making things different.

The roadshow

Posted on by
3

Bit of a #justiceforLB flurry this week with a workshop on Monday afternoon and evening talk at Manchester Met (see Mark Neary and Steve Broach), and a talk/workshop at the NDTi conference the next day. This generated loads of positive stuff which is ace. Meeting up with fellow justice campaigners ‘in real life’ is fab and hearing how the campaign is energising, moving, challenging and clearly being a collective pain in the arse, is heartening.

It’s pretty hard, odd, awkward, I don’t know, just off the page of sad really, publicly talking about your child who has died. Especially (I’m guessing) when her or his death just screams wrong on so many levels. On Monday and Tuesday I showed a slightly edited version of the film Rosie and I made in the days after LB died, for his do. I remember us sitting at the kitchen table in the early hours (because there were no day and night rules in that nothing (but hellish) space between death and burial/cremation), going through photos and home movies and stuff that captured LB. [Howl]. We paid meticulous detail to the content and arrangement of the short film. The magical part of Pure Imagination had to fit with the pic of LB being showered in confetti at a friend’s wedding, for example. A detail lost on others I’m sure (understandably), but of crucial importance to us in our tear sodden, bewildered and devastated states.

I dug out this film this week because I kind of feel that who LB is has shifted. He’s gained notoriety. (A bloody hard fought one, mind). And in death, everything he would have wanted in life – buses and a truck named after him, a collective focus on buses and Eddie Stobart, a top notch legal team fighting his corner, a police investigation – has been achieved. He only needs Emma Watson to champion #justiceforLB and all boxes would be ticked.

Stripping all that back. He was a dude. A six form student with his adult life (though you can fuck right off with this adulthood at 12.01am on the 18th year of your birth rubbish) ahead of him. That he died after 18 years of barely getting a scratch (love him) at home, in ‘specialist provision’ that cost £3,500 per week (£14,000 per month???) with a staff to patient ratio of 4:5 is incomprehensible still. I’m not sure we’ll ever make sense of it.

But the campaign is keeping LB alive in a kind of cheesy old way. I suppose that’s why it’s a fairly typical response by families. And we seem to be getting somewhere. Almost.

As Stevie B says:

image

Too bloody right.

Inaccurate submissions

Posted on by
19

At that first pre-inquest review meeting, back in the day, Sloven’s legal team tried to narrow the focus of LB’s inquest with their infamous natural death statement. In addition, they argued the various ongoing reviews into what happened meant that broader issues were being investigated.

This list of reviews included (quote):

Investigations by a number of professional regulators, including the GMC and NMC, following referrals from a number of sources.

Wowsers, we thought. Have Sloven souped up the slowest staff disciplinary process on record? (19 months and still waiting…*) A number of sources? Who? We referred one staff member but other sources?

We found out eventually (today, nearly two months later) that, er, it was just the one two professional regulators. And one two staff members. One referred by us and one (a member of staff who had left) referred by Sloven. Blinky blonky blimey. Really? Trusts and their trusty, publicly funded, legal teams can submit made up rubbish to coroners? How the fuck does that work?

Well clearly in direct contradiction to Simon Hughes’ nonsensical argument on Radio 4 last week that inquests are family friendly, cuddly, inquisitorial gigs.  And families most definitely need no legal representation. Tsk. ‘No no no‘ says Mr Hughes. Waggling his finger vigorously at bereaved families.

It turns out that Bevan Brittan, Sloven’s solicitors, openly promote their expertise in ‘inquest management’. They’ve even got a handy little ‘Avoiding a Coroner’s Rule 43 report at an inquest‘** article allegedly aimed at beleaguered Trusts caught on the hop letting pesky patients experience serious harm or worse on their watch.

An extract from their website:

BB

Inquest management. Managing witnesses. Statement taking. Management at the inquest. 

My brain (what’s left after 19 months of intense and unremitting grief and a full on battering by everything I naively/stupidly held to be ‘good’), kind of melts at this point. How can an inquisitorial process need management by an ‘Interested Party’?

LB died. He drowned in a bath. In a place in which he should, if nothing else (because there was nothing else) have been safe.

As simple as.

That we are being forced, seemingly deliberately slowly through a shite coated, beyond unfair and punitive system, is inhumane. To discover that Sloven’s legal team can apparently trot out lies, in a public hearing, without sanction, is…?

Dunno. We’re out of words.

*For a Trust that has consistently positioned the well being of their staff over us and other patients at the unit, they don’t half treat them like shit too.

**A serious and reputation damaging knuckle rapping report.

[Update 27.1.15 I made an error in that Sloven had referred a member of staff, but not sure this changes much of the above].

British (in)justice and Simon Hughes

Posted on by
13

No answer yet to my letter to the Ministry of (or for?) Justice but I remain baffled after this week. A week in which we had a second pre-inquest review (PIR) meeting and Simon Hughes, the Minister of State for Justice and and Civil Liberties was interviewed on You and Yours responding to Nico Reed’s mum, Rosi.

Simon Hughes stuck to the line that families don’t need legal representation at an inquest because it is (simply) an inquisitorial process. Such a blinkingly naive and ill informed response. He swerved the question about why public authorities can (and probably always do) have publicly funded legal representation. Typical slimeball stuff.

Here’s what could have happened if we’d had no legal representation at the PIR this week:

inquest

Coroner: Hello. Any questions from the family?
Family: We would like a jury at LB’s inquest please.
Coroner: I don’t think LB was detained so there is no basis to have a jury.
Family: He was. The unit door was locked.
Coroner: He could have asked for it to be unlocked. He wasn’t detained.
Family: Yes he was.
Coroner: I’m afraid I need more evidence. I remain unconvinced.
Family: He was.
Coroner: That isn’t evidence. It’s opinion.
Family: He just was.
Coroner: There will be no jury. Any other questions?

The British “justice” system clearly on fire when it comes to inquests.

“Yes to a jury…”

Posted on by
13

Wow. Not words I ever anticipated writing. Or tweeting. With a hint of triumph. There is no triumph. But then there is, kind of. In a pretty crap and thankless way. In the painstakingly laborious, relentless and distressing process of trying to get some sort of accountability for the preventable death of your child in a hospital bath [crumble].

The coroner agreed to a jury at LB’s inquest yesterday. At the second pre inquest review meeting. An article 2 inquest was already agreed. Whether or not there would be a jury was still to be decided. The decision hinged on whether or not LB was detained. Or not free to leave the unit. The unit with the locked door. And a care plan that stated that he was only to leave accompanied on a one to one basis. The dude who had never stepped outside without someone with him.

The discussion/arguments/submissions highlighted how coroners (and others) don’t necessarily understand how life is for some people. Why would they? With apparent good intentions the coroner tried to make sense of the evidence available to interpret LB’s ability/capacity/wherewithal to simply leave the unit as he chose. A locked door can be opened on request. He asked for evidence, for facts and not legal submissions, to underpin his ruling.

LB wouldn’t ask for a locked door to be opened. Particularly after being restrained face down for over 10 minutes in response to trying to come home on his first night in the unit. [Howl]. After such an inhumane and barbaric experience it kind of becomes irrelevant whether or not the unit door is locked. Simple power rules operate. And if staff had opened the door on LB’s request (which they never did), he would have waited for us to come and collect him.

He was detained. As simple as. Whatever way you want to try and interpret it. The coroner recognised this – after lengthy arguments (both legal and factual) from our legal team- and ruled in favour of a jury.

I was left wondering what would have happened if we hadn’t had legal representation.

The pre-inquest review meeting (2)

Posted on by
6

Second pre-inquest review meeting tomorrow afternoon. Here’s where we’re at:

  • The coroner has agreed to an Article 2 inquest which is good but says no to a jury. Astonishingly Sloven have just said they think there should be a jury too. This will be decided tomorrow.
  • The police will update on their investigation.
  • The coroner will rule on whether Oxon County Council are an Interested Party. We think they should be for fairly obvious reasons.
  • There may (or may not be) some discussion about potential witnesses.
  • There may or may not be a date/length of inquest set (depending on the police investigation and number of potential witnesses).
  • The coroner may or may not allow live tweeting.

Sloven (and the Bevan Brittans) have got a different barrister pitching up. Dunno if this was because Gerry Boyle’s photo was bounced around twitter by the wonderful Open Democracy peeps. Or because he looked totally sick to the stomach trying to argue (on either Sloven or Bevan Brittan’s instructions) that drowning is a natural death at the last meeting. Whatever, he’s replaced by Fiona Paterson.

We have the legendary Paul Bowen, QC, representing us (think that’s the right lingo). He, together with the equally legendary Caoilfhionn Gallagher and Charlotte Haworth Hird comprise a trio of human rights deliciousness that LB would have delighted in. Something that not only reassures us hugely but is also an antidote to some of the extremes we’ve experienced in this half world of unremitting uncertainty and unpleasantness.
OLYMPUS DIGITAL CAMERA

Here’s to sense and integrity.

Another big fat CQC fail

Posted on by
16

I was astonished to get a call from BBC Radio Oxford (love em) yesterday about the new failed CQC inspection at Slade House. Eh? I said. A what? Slade House?

Yep. Turns out Slade House 2, which has six patients, failed on management/leadership and staffing. There was no registered manager and no nursing staff available (or even on site) overnight despite two patients with complex health care needs (which, er, don’t stop when darkness falls). Slade House 2 Nah. A joke. Surely. I thought. A unit, a stones throw from where LB died, in which patients lives are endangered by inadequate staffing levels? And failing leadership/management? (Though clearly superhuman efforts on the part of some frontline staff). That can’t possibly be. Each patient is funded at a cost of around £3500/£4000 a week. Not providing nursing staff overnight is simply obscene.

[Not just on the part of Sloven but also the part of the commissioners (Oxon CCG and the Oxon County Council) who are apparently content to pay enormous sums of money for crap all. Not only consigning people to lives devoid of an imagined future but also leaving them in spaces of  risk and danger. Can you imagine? Can you begin to imagine what this must be like to experience? No one comes out of this with sniff of integrity or decency.]

I was genuinely bewildered. How many CQC fails are the Slovens trying to chalk up in the ‘north of their patch’? How low can you go? How crap can you actually be while your Chief Exec tweets bland and empty nonsense about ‘leadership’?

Well, that leads us back to the big old million dollar (sorry) question really. Why did the Sloves want to take over the Ridgeway Partnership back in the day? Mmm. Worth a little bit of back to the future stuff. Back to early 2012… and a delvelet back to the heady days of the Ridgeway Roadshow….

[I feel chilled thinking that I could have easily driven past this meeting, a short distance from home.. without sniff of what was to happen and our dealings with this bunch].

Take it away Katrina Percy, Sloven CEO. Roadshow Rodeo Extraordinaire. Why do you want to take over the Ridgeway?

The first big thing for us is to create a big voice for learning disabled people..

Eh? A big voice? Wow. Just wow. How the hell did you try to do this? By allowing the Oxon patch of your provision to sink into such malaise drenched disarray that LB died [he died?] and the CQC failed inspection after inspection after inspection?

Sadly there are even more billy bullshit arguments from 2012: Sloven 10 Moving quickly on – from a set of such meaningless statements I want to stab myself in the eye with a sharp stick coated in scotch bonnet chillis – we’re left, quite simply, with not much more than the £8 million reserve and good old Chunky Poundland. Mmm. Awkward. So blinking awkward and wrong.

If Sloven lose the contract in Oxfordshire (which lets face it, ain’t looking unlikely given their track record of such consistently abject shite) they can hypothetically/ allegedly withdraw to Sloven Towers, leaving their ‘patch in the north’ without a backwards glance, clutching a full to bursting bag of Oxon designated bullion.

To borrow from the legendary Ron Burgundy. As ever. Stay classy Sloven. And next time you want to ‘create a big voice for learning disabled people’, park it eh?

The night before Christmas…

Posted on by
10

Delay. The last 20 months or so have been characterised by delay. In July 2014 I wrote this about Sloven delay. Last summer. A year after LB’s death.

Delay is typically a negative experience. Often frustrating and stressful to endure. In many ways it involves being forced into a space that anthropologists call liminal. Neither something nor another. No longer here but no longer there. It involves occupying a sort of hinterland of nothingness, caught between what was and what may become. Even when there’s excitement attached to delay (birth maybe) there’s still an urge and urgency to get there. Or get out of the uncertain space.

From the moment LB died we were flung into a truly foul liminal space seemingly guarded and controlled by Sloven Health and the Bevan Brittans (their legal hench team). And, through a lack of action, NHS England, the CQC, Monitor, Department of Health and pretty much anyone else who may lay claim to any sniff of power to do anything to stop em. Even an independent report, clearly stating that LB’s death was preventable and the outcome of utterly shite practice, published in February 2014, has led to no outcome. Nearly 12 months on. [Howl].

Our beautiful son drowned in an NHS bath, the facts are known and nothing has happened. How can this possibly be? Can you begin to imagine how this feels?

Delay is clearly a key Sloven tactic and I can see why. It’s a form of torture to experience. And the Slevan B’s use it relentlessly, remorselessly and effectively. I won’t rehash the myriad examples here  – these pages are weighted with em – though I gather that the second Verita investigation into the wider issues surrounding LB’s death is in the process of, er, being delayed by Sloven practice. And I don’t suppose the police are holding their breath to receive documentation they’ve requested as part of their on going investigation into LB’s death in the near future.

So yep. We’re consigned to a hellhole space of continually waiting for some two bit, crappy NHS Foundation Trust who couldn’t be arsed to check if their provision in the pesky ‘north of their patch’ was good enough quality after they allowed a young laddy to drown in the bath in one of their units, and then were indignant to be publicly chastised by failing a series of CQC inspections laying bare their crapness. Behind the scenes documents (from FOI requests) are almost hilarious around this*. The Slovens (including Simon Waugh, a Board Chair who should really be removed from post after embarrassing demonstrations of ignorance of foul Sloven practice) attended one particular meeting with Oxfordshire County Council and the Oxon CCG last year which was almost comedic in their protestations/irritation around criticism of their provision. Indignant? When the CQC revealed a Fawlty Towers type level of operation.

But of course it ain’t funny. At all.

Anyway, readers may not be surprised to hear that despite an unrivalled record in delaying all and any action, Sloven and the Bevan B’s managed to call our solicitor on December 23rd. Eh? No way?? Yep. When a lot of the country were already on their crimmy break, this bunch of complete non deliverers picked up the phone at the last possible moment before Christmas.To deliver non urgent information we didn’t need or require but which fitted their strategic and calculated approach to this process*.

A cynical, nasty, deliberate and calculated action. Designed for maximum impact and pain. (More than happy to be put straight on this, if anyone has any alternative explanation for such a bizarrely timed action). Christmas is the time of pain for any family who have experienced a bereavement and they certainly managed to put the boot in brilliantly. But Sloven certainly play the timely card when they choose (like producing a briefing on my blog less than 24 hours after LB’s death). Simply cruel. And inhumane.

Now if anyone can let us know how this bunch of fuckers can really be part of the National Health Service, please crack on.

Cheers.

*We only delay (haha) publishing some stuff/detail because we have to be careful/wait for advice but we will make sure that the entire story is published in time.

A letter to the Ministry of Justice

Posted on by
10

Dear Ministry of Justice,

I’m writing because I’m pretty concerned about this statement you issued to BBC Radio Oxford a couple of weeks ago when asked why there was no legal aid for families to cover representation at inquests:

An inquest is aimed at helping families find out the circumstances behind the death of their loved one. Lawyers are not usually required as the hearings are specifically designed so people without legal knowledge can easily participate and understand what is happening.The coroner is there to investigate the death and can put questions on behalf of the family during proceedings.

This has a touch of the In the Night Garden about it. Naive, meaningless fluff. You present a version of the inquest coated with parma violets, butterscotch and cream soda. Devoid of context. You suggest that families put their trust in the coroner. Yes. Maybe. But they should also be aware that other interested parties (such as the NHS, the prison service, police, local authority) may well turn up mob handed with barristers and the like. Determined to close down questions and limit the investigatory process.

And it ain’t just about what happens at ‘the inquest’. The inquest is a process not an event that happens within a set space at a particular time, as I’m sure you know. It’s a process that involves evidence gathering and submissions. Without legal representation, how can families be sure that the questions they want answered are going to be asked? I ain’t being funny, but coroners are only human and can’t go through the mountains of paperwork associated with a particular death in the level of detail necessary. And a family who are experiencing the gut wrenching and devastating despair associated with bereavement aren’t best placed to (and shouldn’t have to) trawl through records and documents.

If, as you also suggest, the inquest is inquisitorial and not adversarial, why have Sloven Health been arguing for the narrowing of our son’s inquest to one with no jury and no Article 2 engagement? In your sunshine version surely the Slovens would be there cheering on in the sidelines for an inquest best placed to answer questions? With openness, candour and transparency. Not fighting the toss on these points. With spurious, insensitive and offensive arguments that include death by drowning is neither unnatural or non-violent.

Their choice of barrister, Gerard Boyle, also speaks to a fairly weighty adversarial inclination:
image

Gerry is in huge demand by the police and medical defence organisations to appear at Article 2 inquests? In huge demand?? How does this fit with your bland statement that families need no legal representation? It makes no sense at all. You must be completely distanced from the reality of the process, or worse.

I don’t know how to convey to you how we felt on the morning of LB’s pre-inquest review meeting. Back in November. When, three hours before the meeting, we found out who was representing the Trust. Such a blatant sign of their determination to fight. To fight about the circumstances of the death of our son they’d previously accepted was preventable. I really don’t know how an NHS Trust can possibly defend the death of a patient with epilepsy in the bath but that’s clearly not stopping them. I’m just relieved we have a legal team that shine a fierce light on human rights issues. A team drenched in integrity. And no whiff of parma violet pong.

Advising families they don’t need legal representation at inquests is simply wrong. Each situation is different. And clearly in some contexts legal representation is a necessity. I can’t imagine what it’s like to end up with an unsatisfactory inquest outcome. Other than making the worst thing you could ever imagine so much worse. This is unforgivable. And who funds this representation needs examination and reform. It isn’t fair that families have to pay.

It strikes me it might be helpful to send a few of your bods out to attend some inquests involving deaths in NHS Trusts. To get an idea of how it works in practice. Our next pre-inquest review meeting is on January 13th in Oxford if that’s any help.

Yours,

Sara