Author Archives: sarasiobhan

State of play

Posted on by
6

Nearly 16 months now since LB died. 16 long months. Nothing’s happened really in terms of change or accountability. The preventable death of a fit and healthy young man in the ‘care’ of the state. In an NHS unit. In the UK. In the 21st century. A young man who was victim of a system that simply doesn’t recognise learning disabled people as human. Can you imagine?

LB’s death has crushed our lives. The damage caused by 16 months of fighting, campaigning and raging is unknown yet. But given I feel pretty shit on a daily basis, probably substantial. Standing up to an NHS trust that bullies, deceives and demonstrates complete disrespect/disregard for us, is pretty relentless. The Sloves throw money at reputation repair and focus on protecting staff (a selective protection given a staff comment here). The experience, for us (an irrelevant, irkesome family), is the equivalent of a daily battering. An experience documented by other parents like James Titcombe, Anne Dixon, Rosi Reed and siblings like @waketheworld. How can this be?

So where are we at? In no particular order, as always:

    • One staff member so far is being investigated by their professional body after a referral we made. Sloven staff disciplinary proceedings are like a stuck record; continually finishing in the ‘next few weeks’ or ‘ongoing’.  Shameful, shameful delay and prevarication. The Verita report makes clear individual staff failings. It should not have been our responsibility to do this.
LB 1 million

CEO, Sloven Health, 24.2.14

  • The Death Review is out to tender and will take 4 months.
  • The police investigation is ongoing.
  • The second review into LB’s death, covering transition, mental capacity, restraint, why he went into the unit and broader governance issues, is underway by Verita. Due to be completed early next year.
  • The pre-inquest review meeting is on November 25th.
  • The Slade House site is shut to patients. A problematic silence about what will happen to this prime chunk of land continues. And what is happening to people who would have been admitted to the units there. Nothing like allegedly sweeping in to take over known problematic provision in a different county, allowing it to worsen (till something serious happens), closing it and flogging the land. Nope. Nothing like it.
  • On a brighter note… the #LBBill is going at a pace that Sloven should take lessons from (no vimeo in sight). The easy read version of the draft bill is being produced and will be blasted out for discussion in a week or so. Complete energy, commitment and passion.
  • The LB Fighting Fund total so far, after remarkable efforts is £24, 267.77. Wow. Wow. Just wow. So many people, many of whom we’ve never met and who never met LB, have contributed to this amount. Just brilliant.

We’re heartened by the remarkable solidarity #justiceforLB demonstrates. We ain’t got a vimeo budget but there are countless people willing to step up and do all sorts at the drop of a hat.

We’re also fucking delighted that our quirky dude, who loved buses and laughter, seems to have touched, and even impacted on, people’s lives. What a legend. LB bus museum

Ye olde Faculty Psychiatry of Intellectual Disability Annual Conference

Posted on by
2

Apologies for such a long, cumbersome post title. Psychiatry is one of those disciplines that seems to have an entrenched need to bolster its armoury in weighty words because it ain’t really clear what it does. Their learning disability conference… in Birmingham yesterday and today. (#idconf on twitter).

It all seemed to grind to halt on social media when the panel of Alan Rosenbach, Dominic Slowie, Gavin Harding, ‘A Roy and SMcClinton’ took to the stage this afternoon. A mild twitter fanfare. And then tumbleweed.

@psychiatryofid limped on with less enthusiastic tweeting. (“Fewer members in the audience after lunch, but some strongly-held views #idconf”).

And then bailed out.
idconf3

Ouch.
What unpopular and controversial statements could Alan Rosenbach have possibly made?

These uncontroversial and sensible statements apparently:

idpsych

I agree with these points and the sentiment underpinning Alan R’s response. And applaud him – and other panel members who may have spoken up but were twitter censored – for making them.

Though I do wonder why psychiatrists hold this power over learning disabled people (a wonder reinforced by the #idconf twitter feed).

Our experience of psychiatrists in the six months before LB died (he died???) was lamentable (no words really) and the story of Lisa (detailed in the 3 Lives Report) continues to send chills down my spine.

I’m left wondering what ‘ID psychiatry’ does, apart from  things like measuring digit span and concluding “understanding behavioural phenotypes has huge clinical and social implications.”

Maybe there needs to be a bit more of a radical rethink about ‘who is responsible for whom’. And what this actually means in practice.

The Death Review

Posted on by
7

Justicequilt-2Had a discussion with Rich earlier about calling this post the ‘Death Review’. Or the ‘Review of Deaths’. One of those random  ‘eeek.. should we dress death up in something a bit less in your face’ type chats. But, on balance, gonna stick with the Death Review. Because that’s what it is.

We’ve had #deathbyindifference. The terrible findings of the Confidential Inquiry into the Premature Deaths of Learning Disabled People (CIPOLD). We know learning disabled people die prematurely. We know LB died prematurely [he died??] We know Sloven Health badged his death ‘natural causes’ before the findings of the postmortem were released. We know another patient died of cancer days after LB. A patient who probably didn’t receive the kind of palliative care other patients anticipate receiving.

Barbaric, pretty unspeakable, type death stuff.

The #justiceforLB campaign aims (bit of a thrown together document with hindsight but we’re rolling with it) – The Connor Manifesto – include a request for an independent investigation into other deaths that occurred in Sloven learning disability and mental health provision. A request agreed and actioned by the Real David Nicholson before his departure from the pastures of NHS England.

The scope for this work has now been produced and is out for tender. The work is not about pursuing Sloven blood. It’s about ultimately trying to identify, understand and remedy systemic failings across health and social care. A thorough, committed and considered review of something that should concern everyone. As the specification states; this work will further ‘represent an early implementation of recent CIPOLD proposals’ and ‘feed in to the Equalities and Human Rights Commission Inquiry into the non-natural deaths of people with mental health conditions in state detention’.

This is pretty damn cool in the circumstances. Good for David Nicholson and NHS England who seem to be committed to making effective change for learning disabled people.

Here in the Justice Shed we’re giving this a half tick on our flip chart. Unlike the higher levels of Sloven Health, we ain’t swayed by talk. We want to see the walk. But we’re cautiously optimistic.

Simply not good enough

Posted on by
5

A quickie post today. Here’s our response to the Sloven Board Chair’s response to our original questions. Phew. What a plinking too and fro. (Not eased at all by speaking on the phone last week). Here’s the CEO’s original response (health warning attached to this number… not a pretty read).

Why am I weighing the blog down with such durge? Because a complete focus on self protection, disregard for grieving families and extraordinary incompetence (at best) exhibited by an NHS Foundation Trust should be a matter of public interest.

For those of you who would rather poke your eyeballs out with a sharp stick and fill your boots with raw chilli, here’s a beautiful photo of LB and classmates at school a few years ago.
LB (2)

Thanks to Graham Shaw for his contribution to this response… one of so many people pitching in because it simply ain’t good enough.

The inquest

Posted on by
13

Justicequilt
Received the pre-inquest review meeting (Nov 25th) paperwork from the coroner’s office this morning. (Sob). Thought it would be useful to outline the process here. (This is my sloppy version. For superb information the INQUEST Handbook is your baby.)

The inquest establishes who and where, when and how they died.  An inquest is held when the cause of death is unnatural or uncertain. There are bog standard inquests and article 2 (of the European Convention of Human Rights) inquests. The latter happen when there’s a question mark over state failure to protect someone’s right to life. Article 2 inquests are more in-depth and can involve a jury. Juries are required when someone dies in state ‘custody’.

The inquest isn’t about blaming people but the coroner can issue a critical verdict. Article 2 inquests can lead to narrative verdicts which expose problems or mistakes made.  A rule 43 report is where the coroner writes to the relevant person/ authority who has power to take action to prevent further deaths. Getting a rule 43 report is a chunky old dent in the reputation of an organisation (basically flagging up their shiteness publicly) and should lead to action.

When things are complicated pre-inquest meetings are held to thrash out the scope of the inquest (type, how wide a focus on what happened, whether there will be a jury and what witnesses to call, etc).

Phew. Think that’s pretty much it. Some other snippets… The coroner makes all these decisions. Inquests are public events. LB’s inquest can’t happen until the police investigations have finished. Sloven will have a legal team present defending them at the taxpayers expense. We have to fund our own legal costs (around £25,000) which thanks to  legendary efforts by the great British (and further afield) public we’ve pretty much raised now. This is bloody brilliant. Though so wrong.

The writing on the wall

Posted on by
9

Had a day off today and had a lovely lunch with lil sis, Sam. Once she’d gone, the latest FOI pinged into my inbox. More stuff from the County Council about STATT. This includes a second (in addition to the November 2012 quality review) Quality and Safety Assurance Review of the Oxfordshire Learning Disability NHS Trust (OLDT), just before the Sloven takeover, commissioned in September 2012 by NHS South of England. Conducted by an external consultancy.

The review states that the impending acquisition, issues arising from Winterbourne View and those relating to an inpatient client led to a renewed intensity of interest and scrutiny on OLDT by the Strategic Health Authority. It discovered an insular organisation, with high levels of restraint, a culture in which a casualness ‘about strict process’ had been allowed, variable (even ‘dysfunctional’) relationships with commissioners and a complacency of attitude that was characterised as a lack of awareness and transparency. The review concludes that the culture can ‘best be characterised as a combination of defensiveness and complacency in respect of quality, safety and risk‘.

It recommends that Sloven swiftly act to ask the right questions of senior managers and ‘gain more robust assurance about incidents, actions and outcomes’. It also recommends that Sloven review staff training requirements and work to reduce restraint use.

Nearly 11 months before LB died. Everything that needed to be known about STATT was known. Documented, stamped and signed. A legitimated torture chamber. Post Winterbourne View.

We, knowing none of this, drove our beautiful and beyond loved boy, a couple of miles along the Slade, that cold, dark March evening. To his death. A death that could not have been more clearly written on the walls of Sloven Health and others.

You absolute bunch of fucking bastards.

Talking board level

Posted on by
8

Justicequilt-5So. The call with the Sloven Board Chair. His answers to our questions can be read here. A lot of the call involved going through these, in turn. None of them stand up to much/any scrutiny. And little changed during the call.

A culture of I/we’ve been informed that this, that and the other happens, or is about to happen, without supporting evidence, seems to permeate Sloven Towers. And wider.

Fun and photies

Posted on by
9

Had a crap day on Sunday, flung back into a space in which I couldn’t quite believe that LB died [he died?] the way he did. I think about him pretty much every waking moment but the way in which he died is (necessarily) pushed to the margins most of the time.

Later this afternoon I’ve got a call ‘booked’ with the Sloven Board Chair, Simon Waugh, to discuss the answers he eventually sent in response to our questions around Sloven actions to LB’s death. These answers pretty much say nothing. Other than ‘Er, it wasn’t us guv’ or ‘It was the non clinical staff’.

I don’t want to talk to him. Like I don’t want to chase up the Central Southern NHS Commissioning Support Unit to ask why 6 months of records were missing from my access to record request last week. Like I don’t want to lug a case full of beyond ridiculously Sloven redacted text to an information specialist*. Like I don’t want to read document after document detailing unspeakable ‘provision’ in Oxfordshire with a forensic eye*. Like I don’t want to wait years for any accountability or justice for something that was just off the scale of fucking wrong and we all know it.

I don’t understand (and this is what dominated Sunday) how a young, isolated (in spite of having a full on loving family) person, who was fit and healthy, could die a preventable and beyond imaginable death. By anyone’s standards. In a publicly funded organisation. A heavily staffed apparently specialist NHS unit. [Just add whatever into this space. There are no words. Nothing we can grasp, real, imagined or otherwise. Just a situation of horror and utter despair.]

Katharine Chrome (the wonderful Who by fire blogger and one of the legendary band of forensic shite analysts), tweeted earlier that an old post of mine that re-surfaced at the weekend reminded her of the time when this blog was about fun and photies. Blimey. Yep. It was. And a celebration of quirky family life.

Constantly snapping pics is one of the many things that has stopped for me. Like having a bath. Smiling at strangers. Reading a daily newspaper. Being wildly optimistic. Feeling content or relaxed. The rippling consequences of experiencing such a catastrophic event (and the full weight of a bullying NHS Trust for over a year now).

I hope that the fun and photies will return at some point. #justiceforLB has been a breath of fresh air really. A complete tonic in the face of such shite. If this astonishing, unprecedented, collective force of dedicated, committed, loving, full on, spontaneous, irreverent, thoughtful, creative, artistic, informed, hilarious, energetic, dogged, expert, generous, completely voluntary, skilful, diverse, different and rule breaking embracing gaggle of awesomeness, can’t generate meaningful change, then it really is time to give up.

So, here’s to this afternoon. The next stop on the Sloven slow train of prevarication and dirty tricks. And a cheeky number suggested by Matthew Smith.

  *There has been some legendary, behind the scenes work, examining what appears once these hefty stones are lifted.

The Sloven way: a lesson in arrogance and worse

Posted on by
1

Reading the emails from Oxon county council and clinical commissioning group, I’m struck (again) by the astonishing arrogance of Sloven Health. I’d already heard that when they did their royal tour of Oxon to smooth over the ripples caused by LB’s death, the failed CQC inspections and Verita’s damning report, they came across appallingly. Gail Hanrahan describes one such meeting brilliantly.

I’ve only heard Sloven senior team members talk on the radio/TV news but it’s a throwback to past decades to hear people clearly lacking any understanding about learning disability talk nonsense about ‘the modern way’ and ‘false positives’.

This arrogance is also captured in the Oxon email exchanges about this tour. In one meeting they were apparently concerned that the focus on learning disability in “the north of our patch” was impacting on other services they deliver, and they appeared offended to be asked for a copy of their ‘detailed action plan’. The too big to fail monster clearly in action.

The letter KP wrote to us a month or so ago is another example of this. A letter steeped in ‘I’m absolutely right’ statements and worse. A document  that will surely become an exemplar in ‘How not to engage with families of patients who have died through  a dereliction of duty of care’ events in the future.

The story leaping out from the (hundreds of) pages of emails, reports, minutes from across the board, is that Sloven took over crap provision, did nothing to sort it and are pretty irked that the likes of the CQC and Monitor are now breathing down their necks.

Something is badly wrong when an NHS Trust demonstrates what we’ve seen and continue to see in last 15 months.  NHS provision should surely be about continually trying to enhance and improve care provided. What else does it exist to do? (Obviously we have views on this but here we’re talking about what they ought and are funded to do).

Meanwhile, Sloven merrily collect HSJ awards while the police continue their investigation into LB’s death.

I suspect part of this arrogance comes from having apparently unlimited funds to try to make ‘problems’ disappear. Unlimited funding to chuck at legal teams to outmanoeuvre the odd family who are able (in a beyond unequal playing field) to avoid being crushed in the early days and just about drag themselves to the finish line years later.

A barbaric, inhumane situation. Seemingly condoned by those who must have the power to stand up and say “This ain’t right.  It stops now,” and don’t.

Justicequilt-4

Playing real good for free…

Posted on by
Reply

Justicequilt-3Another week of disturbing revelations and communications. The social care/commissioning group communications are worthy of a PhD in themselves. We’re still waiting to hear why a 6 month chunk of these are missing… though suspect it may be shoddy mcshod biz as usual. Pretty damning really that we hope for incompetence other than worse explanations. The anticipation of ‘good’ or ‘pretty good’ has long disappeared in this murky and devastating tale.

Simon Waugh (Board Chair) also responded in writing to our questions. I’m happy to park the content of his response until we’ve had a call with him early next week. In line with the anticipated/hoped for incompetence above, I sort of hope he is not fully aware of the level of the awfulness of  Sloven actions over the past few years. For those of you unable to wait for a sniff of the response, just imagine meaningless, offensive nonsense.

At the same time, this week has brought more of the good stuff. The extraordinary stuff. So many people doing things, different actions, big and small, to contribute to generating change, for justice, and a shake up of what is a rotten and rotting system. So much good work.

I lose track of how many times emails ping backwards and forwards in the justice shed just stating ‘Wow’.

And it’s all done for free. Astonishing. Wondrous. And one of my favourite Joni songs.