No permission necessary

More insight into how Oxfordshire County Council (OCC) treat the people/families they exist to serve while protecting their ‘own’. We raised numerous issues about the secret review OCC commissioned once we were aware of it. A review that clearly should be binned it was so deeply flawed.

Instead, the OCC social care director wrote to us in May stating ‘the report was prepared by someone independent to the Council and the appropriate course is for him to respond to your comments’.

Pretty pompous really. Particularly given that the director failed to mention that OCC would feed into the ‘independent person’s’ response with their own comments on each of the 61 points raised. A document included in the latest subject access information. I think we can probably all agree to ditch any claim to ‘independence’ at this point. The internal claim boat long since sailed given the circulation list. So, a review that is neither independent nor internal. Mmm.

The extract below covers points 5/6 of the OCC responses to the issues I raised written for the person who produced the review. Capturing so much in few words. And carefully placed dotted black ink.


The consultant, carefully shrouded in secrecy and protection. This is his personal information and we would need to seek his permission before sharing anything…

LB and our personal information?

No permission necessary.

[Postscript: In documenting these (what are, to us) chillingly, consistent accounts of crap practice and worse, I’m not suggesting that Sloven/OCC are monstrous providers/organisations. I suspect these practices are widespread.]

Desperate lady and the four Ds

L1015447The missing Subject Access Request (SAR) info has pitched up from Oxfordshire County Council (OCC). A glimpse into OCC tower skedaddling after dropping the secret review bomb on us in March. It still makes no sense to me. This whole secret review business. Or OCC’s apparent inability to understand how we feel. One senior person wrote in an email;

It feels we allow this desperate lady to shake us all…

Desperate ladies and faux reviews. We clearly need new words to capture these processes. An ‘independent’ consultant brought in (at what expense?) to work with a public sector body to produce… erm, what? Statements like ‘commissioned an independent consultant/organisation’ are trotted out so readily by these organisations, promising so much, so official. Strip em back and it can simply be dosh passing hands to produce pretty much nothing dressed up as something.

OCC continue to describe the review as an ‘internal review’. Rank dishonesty that no body seems prepared to challenge. No one has stepped up to say ‘You shared LB’s records without telling his family, paid someone to conduct an investigation into what happened without involving his family, and circulated a report to various organisations before his family knew the review existed? What the fuck were you thinking? 

Desperate ladies. 

We’re increasingly disturbed by the ease in which conjecture, subjective judgement and sweeping statements are made and presented as incontrovertible ‘facts’ by reviewers/public bodies. Untouchable bodies. Untouchable processes. Meanwhile, what families say or do is dismissed or discounted. Individuals derided and discredited. The four Ds. I was given the opportunity to comment on the review so we should stop bleating about it or make an official complaint. Public bodies protected by a veneer of respectability that bears little scrutiny but remains remarkably enduring.

What a old shitty business.

While OCC were posting this latest, late, info, Rich and I were in Chicago. Attending a session dedicated to LB at the Society for the Study of Social Problems annual conference*. Last year, a motion proposed by Mark Sherry was unanimously passed demonstrating SSSP support for how simply wrong what happened to LB was. Sitting in that session, on the other side of the Atlantic, I couldn’t help reflecting on how most people just get this wrongness. People in the audience who knew nothing about LB gasped when they heard what happened. And yet we’ve had over two years of crap thrown at us by public bodies. Crap that has, ironically, according to Mark Sherry in his presentation, contributed to the strength of support for the #JusticeforLB campaign.

Plenty of learning in this. If Sloven and OCC can ever get beyond their positions of prickly defensiveness and refusal to listen and reflect.


*More on this to follow.

Benidorm and ‘being sane in insane places’


I found out earlier today that LB features in a school psychology course in Benidorm. Rosie’s mate, Molly, working with Oxford summer school students, was asked if she’d heard of ‘Laughing Boy from Oxford’. The class had been focusing on David Rosenhan’s ‘Being Sane in Insane Places‘ and drew on what happened to LB.

Rosenhan’s work was a cracking piece of research conducted over 40 years ago when he and a group of people feigned ‘hearing voices’ to gain admittance to psychiatric hospitals. Once admitted (all 12 of them were admitted to various hospitals in the US) they dropped the pretence of ‘symptoms’ and told staff they were no longer unwell. They were all eventually released (stays lasted between 7-52 days) with the label of schizophrenia ‘in remission’. As Rosenhan describes in the following brief clip, average contact with staff was 6.5 minutes a day, few people visited patients and the experience was one of dehumanisation. Psychiatric hospitals as storehouses for ‘problematic’ people .

Rosenhan could be describing STATT, the now closed unit that LB died in really. Described graphically in a subsequent CQC inspection a couple of months after LB died. Forty odd years after Rosenhan’s study.

[Fill in any words here, I’ve none.]

As a sort of aside, I started to dip into academic grief literature yesterday. After two years. Ignoring the crappy, intrusive, psychobabble nonsense that dictates how parents should feel and act after the death of a child/children, there’s interesting research around sense-making and purpose finding. When a death is sudden and unexpected, bereavement is seen as an assault on meaning making.

I’m not sure how to make sense of the Benidorm story. I find it extraordinary. I almost want to contact the teacher who introduced LB’s story into these young Spanish students lives and thank her/him. I’m shocked that professionals so far away seem to get what happened and understand the wider significance, given the craphole feet dragging, and worse, we continue to experience with the relevant public bodies here.

It also highlights the exceptional learning and teaching resourses #JusticeforLB has randomly generated. A collection of artwork, proposed legislation, film, text, photography, music and other materials, crowdsourced and freely available. This includes David Harling’s powerful and shaming animation about what happened to LB which always deserves another shout out.

I learned about Rosenhan as an undergraduate when LB was a tot. A newly diagnosed tot who bounced around on his toes like Tigger. Before he was prescribed with heavy shoes. To stop him bouncing.


Going global and getting it

In a week in which the Justice Shed was rocked by the police decision not to put a case to the Crown Prosecution Service, there were some brighter moments. Internationally. Katherine Runswick Cole and Dan Goodley spent a chunk of last week flying the LB flag in Australia. They were at the Centre for Disability Studies, University of Sydney for various activities including a symposium on institutional disablism and workshop about the value of self-advocacy.


Katherine then went on to New Zealand to meet with The Family Network and University of Otago, School of Education, where she shared the platform with Paul Gibson, the New Zealand Disability Rights Commissioner (pictured third from left below). And continued the tradition of LB flag flying brilliantly. Seriously. Did anyone imagine the symbolism, reach and resilience of this wondrous piece of cloth?


The international spread of #JusticeforLB continues next week as Rich and I head for the Society for the Study of Social Problems annual conference in Chicago. A resolution proposed by Mark Sherry about LB’s death was agreed at last years conference. As Mark wrote to me at the time:

Sara, there were hundreds of people involved in motion. It went to a Directors (or Chairs) meeting, before it went to the general assembly. There were some minor ammendments, and people wanted elaboration, but it eventually passed unanimously. I was very moved, I left that session close to tears. There are good people in the world. I will scan it and send the entire resolution to you. But the massive outcome is this: “Be it further resolved that SSSP add a special session at our next conference in honor of Connor Sparrowhawk. The session will ensure that the issue continues to be discussed into the following year, with scholars examining the social problem further”.

And it is. Next Friday morning.

Among the horror, incredulity, uncertainty and and intense relentlessness of trying to gain justice and accountability from publicly accountable bodies in England, so many people, groups and organisations get it so blinking right.

Solidarity. As simple as.


True detectives, (in)justice and the law

[9.8.15] I’m writing this in advance of a meeting with the police tomorrow at 4pm. A meeting that will, I suspect, involve closing the investigation into LB’s death. There won’t be enough evidence to put a case to the Crown Prosecution Service (CPS) to bring a charge of corporate manslaughter against Southern Health NHS Foundation Trust (Sloven). These charges rarely happen in the NHS and early findings from the second Verita review suggest that Sloven will slither away, largely untouched. Despite numerous failings documented in their Oxfordshire provision (the ‘north of their patch’). Captain fantastic spending on consultancy that should never be necessary. Pricey legal representation will reduce reputational damage to a blip. Blips will be obliterated with tedious (meaningless, utterly meaningless) ‘lessons learned’ bleats. Blips, bleats and back to business [because that’s what it’s about] as usual.

The young dude who, stuck in a now acknowledged, recognised and subsequently closed Sloven run hell hole, denied his right to life. Unsupervised in the bath. Despite a diagnosis of epilepsy and documented concerns about increasing seizure activity. A life too easily swept into the ‘we couldn’t give a flying fuck’ corner. Like so many others like him.


We first met the police the morning LB died. In the ‘relatives room’ in the John Radcliffe hospital. A space of abject, unspeakable horror. Disbelief, horror, tears, howling horror, sugary tea, organ donation talk, horror, tea, tissues, tears. An hour or so earlier, I’d been on my way to work on the number 8 from Barton to Oxford city centre. Fran and I texting about the school prom the following evening.

The care and sensitivity the A&E team demonstrated was matched by the two police officers who pitched up that morning. Their involvement seemed to be a formality at first. There didn’t appear to be anything suspicious… ‘No’ we managed to say. Among the tears, tea and tissues. LB should not be dead. Dead? 

Since that morning, the police investigation started, stopped, restarted after the first Verita report findings and now, who knows. The bar for a corporate manslaughter charge is so high, it’s almost meaningless. Particularly in the NHS. You might as well chuck shedloads of documented shite practice into the nearest skip as the one email/letter/report/piece of evidence that demonstrates that the board clearly knew that practice was shite and did crap all, is so unlikely to be found. Despite the blinking obvious fact that NHS trust boards should be aware of the level of shite practice that happens on their watch. Particularly when they’ve taken over known failing or dodgy services.

[Update: 10.8.15]

The police haven’t the evidence to put a criminal case before the CPS. The bar of ‘gross’ negligence hasn’t been met. Negligent yep. Gross negligence no. Their investigation is now effectively closed. Our definition of ‘gross’ negligence a world away from that of the law. LB died. He barely gained a scratch in 18 years in our care but died in specialist NHS provision completely unnecessarily. The 2011/12 quality account flagged up the failure of Ridgeway Partnership to improve their epilepsy related practice and the necessity for this to be sorted as a priority. But hey ho. Wait till someone dies and then ban everyone from bathing on the Slade House site for six months. No one from head office way down south will know (or care).

The police, particularly the detective constable who happened to be on duty that morning, and his sergeant, were committed to thoroughly investigating what happened. The contrast between their consistent decency and humanity and the cruelness and unresponsiveness demonstrated by other public agencies is striking. They engaged with us as human beings, people who have and continue to be put through the unimaginable. The law simply seems to be a too crude tool with a measure of injustice built into the system.

I drifted a bit. Sitting in the kitchen with the three officers as they talked us through the investigation. And wondered what LB would think. He had an unwavering lifetime love of the police and the law. Of justice and human rights. He would love the attention to detail and careful process being described. It would be something he would return to endlessly. The source of a billion questions.

‘Why did they close the case mum?’

The public have left the building

Two local authority (LA) related stories bounced into my twitter feed yesterday morning. The first detailing a judgement in a family court hearing where the judge found an attempt by the LA to trump up a case against a father reprehensible:

To describe the social workers’ written and oral evidence as merely grudging when it comes to the care and security the father has given his children is too generous; Ms Wilkinson was certainly both grudging and defensive when giving oral evidence; their unprofessional attempts at case building are reprehensible. (47-52)

The second was about a social worker in Oldham who was wrongly dismissed after being blamed for the death of a man in his care. Here, the LA investigation was judged to be ‘seriously flawed’, setting out ‘with a mindset predisposed’ to find the social worker guilty. (The LA remain convinced they acted appropriately and with integrity despite this ruling). Shocking stuff. As Rich said ‘I don’t pay money for public bodies to fit up citizens…’

This took me back to the Oxfordshire County Council (OCC) ‘review’ (‘revised version’) and their response to my issues with the content (setting aside, momentarily, the issues around conducting a review secretly and then circulating it to various organisations before lobbing it at us with no warning). There are three overlapping areas I want to touch on here. With the odd swear or few.

‘Us’ and ‘them’
There are clearly marked differences in the framing of OCC staff actions and ours (mine) in both the review and response. It’s not hard to detect a ‘predisposed mindset’ in the way these different ‘parties’ (yes, parties) are discussed and levels of credibility/validity attached to the differing accounts of what actually happened. Any actions involving me are stripped starkly back in contrast to those of OCC staff which are typically dusted with mediating factors.

For example, the review originally reported I cancelled one meeting when I’d asked for it to be rescheduled (I write, waving a copy of the fucking email pointlessly in the direction of OCC towers). The review now states:

The records indicate that this was cancelled by the family but SR has advised that she asked for the meeting to be rescheduled which is not recorded on the file.

When OCC staff and a respite manager were a no show at a later meeting the response is; Records show that an appointment was offered and the care manager was hoping to visit with the respite care manager. There is no record that this took place or was later followed up by either party.

So I’m solely responsible for the non happening of the first meeting and jointly responsible for the second. With ‘hoping’ attributed to the actions of OCC staff. And a dismissal of the email exchange I have confirming the time and place of that second meeting.

This bias is an inevitable outcome of excluding us from the investigation. One sided investigations easily lead to a notoriety (in differing strengths/dilution) developing around the person who is the focus of the investigation.  Fleshed out humans from OCC were able to talk about what happened. Our contribution was reduced to scant mention in ill kept ‘official’ records. Written about us.

A flaky and shifting ‘evidence’ base
The flaky and shifting ‘evidence’ base underpinning both the review and response is striking. Some of the points I raised were accepted (things like removing words like ‘although’, ‘however’ or ‘providing consultation’).

Several points were dismissed. ‘Not within the terms of reference’ or ‘I couldn’t possibly comment’ type responses sprinkled here and there. Other points I made are added in, quoted verbatim and/or sandwiched between ‘pwah, not according to our records…’ type statements.  Making for a bizarrely unprofessional and odd document. [You really can’t conduct a review without involving relevant people, then invite comment after publication/circulation and try to fudge in/ignore the issues they inevitably raise. It doesn’t work].

Funnily enough, these same ‘official’ records can be teased, squeezed and transformed when it comes to interpreting OCC actions. I didn’t meet with a staff member on a particular date but the ‘signing of a support plan with SR’ noted in the records was (and remains) ‘assumed to be a meeting’. The (non) attendance of a staff member at another meeting is recast in the revised document as ‘SR has advised that the care manager did not attend this planning meeting, so it may be the case that there were two meetings that day’.

The no show I referred to earlier is presented as; ‘The reason is not confirmed by the record. SR has advised that she waited at home all day for the visit to take place, but there is no record of the services being informed of that’. [One of the many things I’ve learned over the last two years is that families have to record every happening. This, of course, is a sure fire way of being labelled even more vexatious than many parents of disabled children already are. But making decisions about what levels of crap service to shout about and what to suck up (leaving little space left to do much other than complain) is a shortsighted approach when something catastrophic happens.]

More leaps are made. Unsurprisingly always in OCC’s favour. ‘This was the impression given from the records’, ‘My view from the records and discussion was that x’s actions were satisfactory’. ‘This was my view of the relationship as reflected from the emails and my discussions with staff.’ ‘I am not making any judgment here on how plans were made, but it remains the case that discharge planning was moving forward at this point’. Ah. Yes, of course. If you’re looking through OCC tinted bins with more than a hint of eau de make it up when the evidence don’t quite fit splashed around your chops. LB was in the unit for 107 days and fuck all had actually been done to discharge him. [NB. Distinguishing action (that is stuff that is done) from talk about action is an essential exercise in evaluating provision/service].

Further evidence of bias (and that the review is really about my actions) can be seen in another meeting example. The original review stated I wasn’t present at a particular meeting with the school/OCC staff. ‘I.wasn’’ I jabbed out on the keyboard that awful Sunday I spent pulling together the issue list. The amended ‘review’ now states; ‘SR was not required to be present on this occasion, the purpose of the meeting was to seek CS’s views and gather information from the school‘. Simply deleting ‘SR did not attend’ would be the obvious thing to do in a balanced, evidence based review. But of course this ain’t a balanced, evidence based review.

Power and destruction
Finally, I raised the point that LB’s death wasn’t tragic. It was preventable. A point that surely tramples over the process nonsense that the review is obsessed with. A young dude died. He died. Aged 18. He shouldn’t have. In circumstances in which state bodies, directly and indirectly responsible for keeping him safe from harm, clearly failed.

Nah. Instead of simply removing mention of ‘tragic’ from this ‘review’ (a fairly insubstantial amendment given that ‘second’ meetings on the same day were being trumped up) the (cruel and completely contradictory) response was  ‘It is not part of my terms of reference to comment on the events surrounding CS’s death’. Four mentions of LB’s ‘tragic’ death remain in the revised ‘review.’

One of the terms of reference of this ‘review’ (lifted from the broader Verita review that it was always was designed to feed into, despite the re-storying of events by OCC lawyers) was to explore ‘the contact between adult social care, CS’s family and school’. Buckets galore needed to catch the dripping irony here. We can only really draw the conclusion that this review was never about reviewing, learning or trying to improve any aspect of OCC provision. Instead, like the family court case and Oldham social worker story, it was an attempt to discredit while trying to preserve the ‘self righteousness’ of the local authority. Because they can. Regardless of the impact their nasty actions have on the people they pretend to serve.

Surely it’s time for a rigorous and critical overhaul of these pernicious practices that suggest the public in ‘public’ sector have long since left the building?



The leader of the pack


I met the Leader of Oxfordshire County Council (OCC) this afternoon. I asked for a meeting after the latest crap OCC action; due to an ‘oversight’ they missed the deadline on my subject access request before they found it (after I chased it up). I wanted to try and explain to him what it was like to experience such relentless crap after LB died [he died?] in provision they commissioned.

He listened. Someone busily typed everything said. He said he didn’t know about some of the points I raised. He’s going to look into why we weren’t informed that OCC were conducting an ‘independent review’ into what happened to LB. Why this supposedly internal review was circulated to various organisations (including NHS England, Southern Health NHS Foundation Trust and Verita) over two weeks before we received a copy. Why we were emailed a copy of this [foul] document without warning at 9am one Monday morning. Why, in the two years since LB died, there is nothing OCC have done that I can call ‘good’.

Why, after everything that’s happened since LB’s death, including producing and circulating a report that should never have seen the light of day, OCC staff seem incapable of thinking; Jeez, their child died in care we commissioned??…/We cocked up with that review. For goodness sake, let’s hurry this FOI through and not wait till the final day before responding…/Blimey. We’ve now ‘lost’ their subject access request??? So and so, make it a priority for the next few days would you? The least we can do is respond in a couple of weeks rather than a month’… And so on.

The content of the review (original and “revised”) is with our solicitor. The meeting today was about process. So that was that. In and out in under 15 minutes. I don’t know if he got any understanding of how much additional distress the public body he leads has caused us. We’ll just have to wait for his response.

Dead times and fuzzy felt versions

LB’s inquest is scheduled to take place from October 5th for up to two weeks. This date will be confirmed at the next (4th) pre-inquest meeting (Sept 9th) and seems to depend partly on whether the police decide to pass evidence to the Crown Prosecution Service for a possible prosecution or close ‘the case’. And whether additional ‘interested parties’ need more time to consider ‘evidence’. [Some staff members are now ‘interested parties’ and may have their own legal representation.]

Attending an inquest isn’t a common experience for a lot of people. The thought of what lies ahead reminds me a bit of the days leading up to LB’s funeral. His do. An inevitable, unavoidable ‘thing’ drenched in horror. Unimaginable horror.

But funerals are typically organised within days or a few weeks. The unspeakable is, necessarily, whipped through really. Mates stepped up and worked magic, generating celebration. A red double decker bus, Charlie’s Angels were pall bearers, “Here Comes the Sun” strumming out from a baking hot woodland corner, hundreds of used bus tickets scattered over LB’s Routemaster coffin. A party. (Almost) fun, food and footy.

When the NHS (or other public bodies) are involved in unexpected deaths, delay is introduced. For no apparent reason. Weeks, months, years added to routine processes. Dead times. Torturing devastated families while generating distance from memory. Effectively producing fuzzy felt versions of ‘what happened’. Pieces moved about, dropped, lost and ultimately discounted. The delay also allows an ‘it was ages ago now..‘ tired feel to the process [howl] and facilitates a ‘things have moved on now.. We’ve learned so many lessons and implemented more changes you can shake a worn out old stick at…’ type outcome. Effective wrapping up and diffusing atrocity/obscenity in faux (shiny) processes and made up ‘learning’.

This strategy is losing its punch a bit now because of social media. Patients/family members and others can record stuff as it happens, return to emails and publicly available accounts, producing ‘evidence’ to challenge or refute. People can hook up with other people who have similar experiences or are simply outraged by what they see or read. Mobilising support, strength and resources. Relevant historical and contemporary context is accessible online or via FOI requests. It’s now easier to convincingly say ‘Eh? Whaddaya mean? This happened before. And continues to happen...’

This is good (though we still ain’t got anywhere in our fight for justice). Why patients, families and others should be doing this work though remains utterly baffling.


We need to talk about Mencap

The CQC published a chilling review of a Mencap run ‘service’, Precinct Road in Hillingdon, on Friday. Yep. Mencap. Documenting so much so wrong I can’t summarise it here. A series of human wrongs.

This went under the radar until Mark Neary came across it this morning and started to tweet about it.  A teeny tiny (anti) press release was eventually published later today stating very woodenly;

Mencap takes very seriously any requirements and recommendations on how to improve the quality of support we provide. After a recent CQC inspection of Precinct Road in Middlesex we have apologised fully to the people we support and their families.

We have taken immediate steps and great care to fully address the actions outlined by the CQC’s requirements and recommendations. Our procedures and environment at Precinct Road have improved as a result.

Mencap is committed to ensuring that we offer the highest quality care to enable people with a learning disability to live the lives they choose to live.

This was missing the hallmarks of a typical Mencap press release; speed and a grandiose statement by the Chief Exec – usually in cahoots with the CEO of the Challenging Behaviour Foundation – ‘calling upon the government’ to do diddly squat. (Ensuring their continued seats at any table, breakfast or otherwise, where endless, pointless but costly discussions about the provision of services can be chewed over a doughnut or ten). Oh, and no link to the CQC report. Breathtaking.

I’m left thinking… Mencap (or Menace as my autocorrect keeps calling them):

  • How could you possibly be required to improve the services you provide given you are the (self proclaimed) ‘leading voice of learning disability’? With the £b?/millions you have at hand?
  • Why did it take a CQC report to make you act at Precinct Road when it’s clear from the CQC report that the problems identified were apparent for several months?
  • Why have you only apologised to the four people who ‘live’ at Precinct Road and their families? Surely you should issue a wider apology. To all those you ‘support’ and those who fundraise and volunteer for you?
  • How you can possibly say you are committed to ensuring you offer the highest quality care to enable people with a learning disability to live the lives they choose to live… when you don’t?
  • And finally. Are you a provider or a campaigning charity? Because you clearly can’t be both.