Thunderbirds, the scullery, care plan and the candlestick

Justicequilt-201Third pre-inquest review meeting yesterday. Pretty buoyed by the wondrousness of the Sparrowhawk Art/LiveatLICA event on Monday – captured in its deliciousness in a Guardian online gallery – we headed to County Hall. To be confronted by this screen in the foyer. The colourful and textured fabric of LB’s life reduced to an outdated, clunky and unnecessary statement. ‘The Late’… [Howl].

It really is a number sitting on a bench in a county courtroom. Listening while details relating to your child’s death are thrashed out in front of a Coroner. Sloven and their legal team sitting to the right. Family and journalists sitting behind. Given it’s supposed to be an inquisitorial process, Sloven attendees had a couple of chewy exchanges with their legal team. But we all know it ain’t really inquisitorial. That’s just fakery. A pretence signed up to by many.

The twists and turns of these pre-inquest meetings have been pretty extraordinary. Sloven have (so far) argued drowning is a natural cause of death, argued against a jury, argued that the reviews into LB’s death meant an Article 2 inquest wasn’t necessary and then, once the Coroner ruled that it would be an Article 2 inquest, tried to get the inquest moved to the High Court because the reviews made it very complex. They now seem to be circling in a new direction. One with a hint of clinician.

Like a kind of Cluedo on speed; there was no wrong doing… no body… no weapon…it was the dog… the cat … Miss Scarlett… Thunderbirds, the scullery, care plan and the candlestick.

We’ve just steered a straight path really. But then this isn’t a game to us.

Fieldwork, ferries and feedback

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Today involved five trains, two buses, two ferries and two taxis to get to the Isle of Wight and back for fieldwork. Pretty epic and a little bit unplanned (in terms of timings). But other than one wrong train, one wrong platform, a left tripod and couple of necessary sprints, it went like clockwork. We met some fab people. Learnt a chunk of stuff. And somehow were back in Oxford before 6pm.

Meanwhile, Verita were holding their ‘stakeholder’ event to feedback emerging findings from their broader review into LB’s death. In Oxford. The obvious suspects present (or their emissaries) plus some families.

Let’s just say that trundling along a pier, in almost sunshine, on an old London Underground train, was probably a good place to be in the circumstances. One that LB would have loved.

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Pasta, cheese and epilepsy

I found out this week from an unusually humane ‘official’ source that the Sloven staff disciplinary actions for a chunk of staff were very thorough and a range of actions were taken. Disciplinary actions for another ‘type’ of staff were deemed unnecessary. These staff had done what they could reasonably be expected to do and this had been agreed by an external bod.

‘Mmm.’ I said. ‘Good to hear it was a thorough process, but odd about the latter decision given we referred a member (of favoured staff) and this has been the subject of serious investigation since last spring.’

Nothing like an equal playing field.

The more I read or get told about what happened to LB, the more I despair. Sloven Towers seems to have anti candour armour with Deny, Deceive and Delay stitched throughout. The 3Ds. Allowing no space for remorse, sadness or open reflections about what happened. Reading the various reports/records/FOI documents, there was no epilepsy. No seizure activity.

This is core CIPOLD fodder really. LB was ‘learning disabled’ so his right to any other diagnosis was compromised from the off. He had to wait the best part of two years to get an epilepsy diagnosis (despite two ambulance trips to A&E and various other reported seizures involving paramedics). While the earlier absence type seizures were puzzling the tonic clonic numbers that followed left no doubt.  A tonic clonic seizure is, as anyone who has seen someone experiencing one, clearly an epileptic seizure. A harrowing experience.

LB’s eventual diagnosis was pretty low key. Some 1950s medication prescribed by an A&E doc, an appointed neurologist, but no invitation to attend ‘First Fit’ clinic at the John Radcliffe Hospital. A handwritten note querying this is scrawled on hospital records but notes are notes. Not action. Maybe he’d had too many ‘first fits’ to qualify for entry to that particular club. Or maybe the learning disability label meant such an invitation was inconceivable. Who knows. It didn’t happen.

Soon after LB died someone from Young Epilepsy contacted me about speaking at some school related event about epilepsy. During the telephone conversation, when it became apparent that LB had been at a special school, the invitation was rescinded and the call ended. Wow. I thought. Sitting at work, receiver in hand. Denied epilepsy legitimacy in death as well as life. Wow.

The canyon that separates ‘official’, publicly funded, engagement with what happened and our experience remains immense. One of Tom’s school mates said to him this week that coming round to our house now is kind of like having pasta without cheese.

I so know what he means.

Imagining Sloven or Oxfordshire County Council (and probably other) peeps reading this, I can hear them bleating “There’s no such thing as cheese or pasta. He’s talking rubbish,” without missing a beat.

Because LB didn’t matter.

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A commissioning tale

I re-read the FOI docs from Oxon County Council (OCC) at the weekend. What they demonstrate is so depressing I thought I’d write a bit about them with the hope that other local authorities/commissioners might look at their own responses (and their staff responses) to learning disability type issues in their work and think differently.

The unit LB was in (STATT) was jointly commissioned by OCC and the Oxon Clinical Commissioning Group. OCC were in charge of reviewing the quality at the unit. What still astonishes me is that, after LB died, there was no immediate flocking to STATT to check the quality of the provision. In fact, an updated quality control review conducted in May 2013 was being circulated on July 22, just over two weeks after LB died:

OCC response

Clearly no concerns whatsoever about the quality of provision at the unit. And LB?

Who?

At this stage of course, Sloven had decided he’d died of, er, natural causes, so everyone could carry on with business as usual. Learning disability trumping every other part of a quirky, gentle, humorous, young dude. To such an extent that no one in Sloven, OCC or OCCG seemed to say “Eh? 18 years old? In the bath? Something is clearly wrong here.

Rich and I have often thought how, if LB hadn’t died, the provision at STATT could have continued indefinitely but really it wasn’t his death that put a stop to it. It was the CQC pitching up two months later. They failed the unit on everything and published an inspection report that makes the back of my hands prickle, it is so damning. It documented a place that had long lost any whiff of care. A space empty of any meaningful interaction, any therapeutic engagement, dirty, unsafe, empty and toxic.

A shocking, shameful uncovering.

So how did OCC towers respond to this? They’d allowed a group of people to ‘live’ in such a terrible environment even after a young person died? At a cost of £3500 per week each. (Around £112,000 in the time between LB dying and the inspectors arriving). The response seems to be a mix of fear, defensiveness and bravado. And statements that reveal the inhumanity with which learning disabled people are both treated and perceived.

cqcAgain, an astonishing response. On so many levels. But no one challenged it. Despite the blinking, bleeding obvious awfulness of it…

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Perhaps an essential ingredient for culture change is a more critical engagement with how applicants perceive learning disabled people at a recruitment/promotion level. Involving learning disabled people and families in the process. Having the wrong people in the wrong jobs clearly allows crap ‘care’ to continue. And, at worst, actively contributes to it.

Reading between the lines

Some thoughts about the latest communication from Sloven below in bold. Still astonished by this email. And that we won’t be given any information about staff disciplinary action. We don’t expect names. Just evidence that appropriate action has been taken where relevant. Post Francis, Winterbourne, Keogh, Kirkup, etc, etc, etc. Is anyone in charge?

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A business pretending to care

The update from Sloven on their staff disciplinary actions has weighed heavily since we received it.

I sit in the Justice Shed surrounded by LB ‘stuff’. He’s woven through the fabric of our home, hearts and lives in ways that are both visible (in bus and related memorabilia (is that the right word?) and through the memories/thoughts and laughter we (and this space) constantly evoke. I’ve said recently how much he’d expect and enjoy many aspects of the #JusticeforLB campaign. The buses and lorry named after him. The police and HSE involvement. The human rights legal team. The inquest process and Divine Comedy tweet. Norman Lamb talking about ‘Connor’s law’ at the Lib Dem Spring conference.

His death has captured so much of his imagined future. A future we never really imagined.

He would be enraged by Sloven actions though. They would upset his view of the world. Of the people and organisations you can trust and rely on. Police are good/burglars bad categorisations.

When we told him, that terrible day two years ago tomorrow, that he was going to hospital, he was fairly chilled about the idea. He’d enjoyed visiting his grandad weeks before at the JR. He loved the attention paramedics gave him when he’d had seizures. The NHS was in his good column. When we turned left at the crossroads instead of right, and ended up outside a crappy bungalow where we were almost not allowed in, he became less keen. But it was an NHS hospital (we thought). And even though a few hours later he was subject to violent and extended restraint and then drugging, we thought they must know what they were doing. [I know].

Since the whole foul tale of the Sloven acquisition of the Ridgeway has unfolded (see Chris Hatton’s latest forensic analysis here), Sloven have consistently proved themselves to be at best crap. They really ain’t worthy of the public service label. That’s probably what we’d have said to LB in the end. ‘They ain’t really NHS mate. Just a business pretending to care’.

 

Vintage NHS and Sloven actions

Some factoids (LB loved Steve Wright):

    • I’ve not named any member of STATT staff on this blog.
    • We’ve not, in our lengthy and tortuous campaign for justice, made it about individuals (other than the board chair/CEO who really are/should be where the buck stops).
    • Until we know the outcomes of the staff disciplinary processes, we will not know whether we should refer staff members ourselves (in addition to the person we referred after being told s/he had left the country).
    • Candour, transparency and honesty are big themes in the post-Francis, post-Keogh, post-Kirkup new NHS world.
    • A journalist, not Sloven, told us last week that, 21 months after LB died, the disciplinary actions were complete.

And Sloven haemorrhoids: NHS England today told us that Sloven will not provide information on the specific disciplinary actions taken in relation to staff. All we can be told is this:

Dear …,

As discussed, I wanted to share with you some information regarding the conclusion of the STATT unit disciplinary process, and would be grateful if you could share this information with Sara Ryan:

Disciplinary processes for staff at the STATT unit have now concluded with appropriate disciplinary action being taken and relevant professional bodies being informed. The processes took a longer than we would have wished for several reasons, including:

1. A series of internal and external investigations took place, each one prompting a halt to the disciplinary processes to ensure that all relevant information could be considered. Indeed external investigations are still underway; a decision was taken to proceed as further delays were unacceptable.

2. Cases were frequently delayed as we awaited the return to work of staff members who were on sickness leave and upon whose statements each disciplinary case relied.

3. There were scheduling issues around ensuring staff had adequate representation from their staff side bodies.

4. At various points through the process staff or their staff side representations raised grievances or challenges that staff were not having fair hearings due to the media and social media attention being given to the STATT unit (which also was often given as the reason for staff absence) These challenges needed to be resolved prior to proceeding with disciplinary hearings.

Despite these genuine reasons, the Trust is committed to re-examining this process to consider what might have been done differently, as there is no doubt the resultant delays have added to the distress felt by all parties. The Trust is working with Staff Side bodies, our Director of Nursing and other parts of the NHS to consider such delays could be avoided when several staff are subject to disciplinary action at the same time within one working area.

Best wishes

Blimey. Where to start? Just for now some initial thoughts:

  1. 1 and 3 are non excuses/examples of incompetence/poor organisation and leadership. These investigations began 9 months after LB’s death and any of these issues could and should have been anticipated.
  2. As 1. above, I’m not sure staff disciplinary actions are typically delayed because of media attention. This too should have been anticipated (and was, given the blog briefing circulated a day after LB’s death).
  3. Seems as plausible that staff absence would relate to an endless staff disciplinary process as much as discussions about the STATT unit (which closed in 2013) on social media.
  4. How do we know any action has actually happened*?
  5. Should it be up to Sloven to decide what is ‘appropriate’ action in the circumstances?
  6. If no further info about these disciplinary processes is forthcoming, do we now have to refer pretty much everyone (including the CEO and Board Chair)?
  7. Might this bizarre level of secrecy be related to an end game attempt to ‘frame’ one or more staff members for what happened?
  8. Do Sloven know what an ‘outcome’ is?
  9. sloven outcome Was this NHS Change Day [cough cough] pledge, made by a senior Sloven staff member less than a week ago, a complete load of billy bullshite?sloven
  10. Is this really how the NHS want to (or be seen to) respond to a family whose 18 year old son was allowed to drown, unsupervised in the bath, in specialist learning disability provision?

So many thoughts/questions. #JusticeforLB is a vanguard (joke) movement using social media to try to redress the toxic power differentials that can exist within the NHS when it comes to responding to catastrophic occurrences. We have been, and are, enormously reasonable with our ‘demands’. Despite extraordinary and consistent provocation, delay, obstruction and deceit, we have remained pretty measured. We have worked our socks off, we have met with various relevant organisations and contributed a Justice shedload to the mouldering, stale and faction ridden space of post-Winterbourne View learning disability provision/organisation, for nothing. ‘Fresh air’ has been mentioned numerous times in relation to our campaign, which has also been recognised and remarked upon by various influential people (which we thoroughly appreciate). And yet Sloven continue to demonstrate behaviours/actions that characterise the worst of vintage NHS.

Remarkable. Sadly.

*Just to be clear here, we are in no way arguing for any naming or shaming of individual staff members. Simply that the process is followed transparently.

Another week that was

What a week. Starting with a speedy East Coast train trip to Scotland and back for work. Interviewing learning disabled mothers about their birth experiences. Spectacular scenery, cheeky photos and enforced work space on the journey.

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Got a Stinky Pete response from Sloven Board Chair on Thursday and pre-recorded an interview with Radio 4s You and Yours about Norman Lamb’s No voice unheard, no right ignored Green Paper that afternoon. A bit of an odd situ, sitting alone in a room at BBC Oxford with a set of headphones, bootleg copy of the Green Paper and microphone, waiting to speak to Shari Vahl about LB and the campaign.

Made me feel pretty sad really but it wasn’t as awful as the first time I did it. Back in the day.

The Green Paper was published yesterday with a good set of responses, commentary and media coverage [eg. Community Care, Oxford Mail, BBC and Rights in Reality]. We produced a campaign response in typical Justice Shed type fashion: part tongue in cheek, part cutting (we hope), passion drenched and last minute/skin of the teeth type jobby. Norm, love him, was heartwarming in his recognition of the trouble and toil we’ve* been undertaking. And a complete sob (in a good way) moment for Connor.

Norm

[Update: good summary piece in the Guardian too].

I was working at home. My mum had volunteered to transform the out of control mass of stuff/paperwork in the Justice Shed into order.

This effort was partly to find a missing (seemingly crucial) record in getting #justiceforLB. One of those documents you can’t help thinking really? This is necessary? What is being denied rather than asked here? I worked my way through my usual cone of shame work tasks while my mum cussed about the lack of dates on various letters/documents, efficiently magicking a mountain into three, well ordered, neat boxes. Three? Wow.

The missing record was nowhere to be found. I called the GP surgery to ask if they could provide a replacement copy. Sigh. Not a good call to make. Er, record, yes. Relating to our dead son…

Yes. His name is/was/[howl]. It may be under my name… Thank you.”

I walked to the surgery and picked up the record. Another line in Sloven’s bizarre ‘We completely accept LB’s death was preventable but, at the same time, our legal team will continue to do everything in their power to overturn some stone to get us out of the shit’ approach closed.

Then today. The first day of filming for the LB movie produced by My Life My Choice with Oxford Digital Media, funded by Oxford City Council. Filmed in the Jam Factory. As it probably should be.Justicequilt-80

*For any new readers to this blog, I just want to clarify that #justiceforLB and the #LBBill are collective endeavours. Crowdsourced contributions from all sorts of people (an explosion of diversity, colour, brilliance, cheekiness, humour, passion, commitment, rule breaking, sense, and love).

Monitor lizards at the Sloven Corral

Another remarkable letter today from the Sloven Board Chair (who I’m now beginning to think might be deluded). We’re still thrashing through various issues around Sloven’s behaviour since LB died. Real scum bucket behaviour. Perhaps not surprising really given the Kirkup report this week that details shockingly awful actions in another NHS “Trust”. We’re clearly a way away from candour, honesty and transparency. Despite all the blather.

So. One part of the letter was about social media surveillance. Mr Waugh states

Like many organisations, the Trust monitors media and social media mention of its name, hence the content of the briefing to which you refer. This does not constitute surveillance of an individual.

Mmm. A quick Oxford dictionary search…..

Surveillance: ‘close observation, especially of a suspected spy or criminal’.
Monitoring: ‘maintain regular surveillance over’

Ok. Not sure the monitor/surveillance distinction is holding up here. I blogged about this issue a while back but a screen grab is helpful for a quick glance. Yep. Clearly monitoring. The blog written by the mother. An individual. A specific and targeted close observation (particularly given we rarely mention the Trust by name (unless it is now actually called Sloven)).

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This briefing was written and circulated one day after LB died. [He died?] How the Board Chair of a public body can continue to be so deceitful and underhand to the family of a child they let drown in the bath is unfathomableYou were monitoring/surveilling my social media activity and it was more important to your organisation to think about reputation protection, less than a day after our son died, than seriously look at the service being provided in the STATT unit.

How can this level of dishonesty and immoral action possibly be allowed to continue?

Blistering billy bullshite

The CQC Sloven inspection findings published today are something that demand careful reading. Remaining mindful of the amount of behind the scenes preparation and coaching that goes on for these inspections.

Brief headline: overall finding requires improvement.

We heard of many new initiatives and the trust was continually looking for ways to improve. However it was clear that time was needed to fully realise the scale and complexity of the changes and embed these across the trust.

Mmm. The bar clearly set so blinking low from the off. Businesses can have teething problems expanding, take-overs and the like. Mistakes can happen. For trusts those mistakes have high stakes. Like LB’s life. [He died?]

Growing so big, so fast and spreading yourself so thin across a wide geographical area inevitably ain’t going to work well. As the report today illustrates.

And a startling number of issues identified in previous CQC inspections in Oxfordshire that still occur. The stench ridden “Always about to…” model very much alive and kicking still in Sloven Towers. ‘Point a CQC inspector at us to show us the right route and we’re on it‘ jibberjabber spewing like vomit from a carsick toddler.

Only they ain’t.

Todays batch of failings:

Not enough staff, delays in the supply of equipment, mismanagement of medicines, buildings unfit for purpose, ligature risks, inappropriate seclusion and restraint practices, lack of crisis services and an unanswered crisis line, lack of available local beds, lack of examination of patients by doctors on admission, long assessment waits, uncertainty and low morale among staff, inaccessible records.

There’s some positive stuff I’m not going to record here. The positive stuff is people doing their jobs properly. Good. But not remarkable. The above list, combined with previous CQC inspection findings should lead to action. Not nonsense ‘learning fluff’ spouted by Sloven execs but real action. This bunch of muppets clearly should not be running an empire of crappy healthcare provision across four or five counties.

I worked at home today. Unexpectedly. And the phone didn’t stop ringing. Various people asking for thoughts about the report. There have been some cracking responses (in addition to the now legendary local news coverage). Andy McNicoll at Community Care and Chris Hatton’s contributions are stand out moments.

But hey, what about the Slovens? How have they responded to a grandly piss poor review of their services? Particularly  given their obsession with awards and all things shiny?

In a typical Sloven way.
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