Farcical inaccuracies

It turns out that now OCC have published this report without our knowledge, and shared it with at least one external organisation, I’m expected to go through all 21 pages and highlight the factual inaccuracies contained within it. [Warning: the report apparently took 8 months to publish because the new Deputy Director of Social Care wanted it to be as “robust as possible” and “added quality assurance”. Hard hat time for those who need services in Oxon.]

Can you imagine wading through old emails from a time when your son was still alive [he died?] to correct a report you didn’t know was being written? In your own time? Serious brain melt. How much was matey boy paid to write this rubbish I wonder.

Deep breath.

(I don’t think OCC can seriously expect me to keep this confidential in the circumstances). The report is so biased it’s almost comedic. Definitive statements about my ‘failings’ (without evidence) throughout but light touch on OCC on any dodgy ground. Here’s just one example around the issue of respite.

crap report 3

crap1

Not quite what happened. As the email exchange below demonstrates. I waited in all day for the three of them to turn up. The care manager eventually called to say she wouldn’t be able to come round after all. She’d run out of time. Bit of a shocker really in the circumstances. And one of those things that didn’t ‘appear in the records’. During that call she described the respite centre as a building with a snooker table and made it a completely unappealing option.

crap report2

More mysterious reporting about respite here:

crap1

In contrast, from my blog, 18 March 2013:

crap 1

And from March 19th…

crap6

How can the records possibly show “I did not take up the offer”? The records are incomplete. This incompleteness is a failing on the part of OCC but instead leads to this conclusion:

crap report 2

Ah. It was all my fault. Trial by a ridiculous, crap and biased report. Three “in my views’ in this particular conclusion. How can you possibly have a view that excludes us from the process and relies on partial record keeping?

I’ll leave you with one more nonsensical snippet while I crawl off and wonder what the hell is going on.

crap report1

It was LB’s fault too.

Postscript: It would not be possible to rebut a lot of this stuff without having documented the experience on the pages of this blog. So important to keep detailed notes. And so blinking wrong.

Meeting Tyrone

I bumped into Tyrone this morning in Cornmarket. Tyrone is a couple of years older than LB and is member of My Life My Choice. He was going to catch the no. 6 bus to Wolvercote to the day centre (that used to be near Sainsburys in Cowley).

“What do you do at the day centre, Tyrone?”
“Snooker. Play on the Wii if it’s out. Or just chill.”
“I can remember taking LB to Parasol there.”
“Yeah. I used to go to Parasol but I gave it up because I got too old. LB would be too old to go to Parasol now.”
“Yeah.”

We stood at the traffic lights by Debenhams. My bus was waiting. After vague indecision I sort of coaxed Tyrone across the road alongside me despite the red light.

“Sorry Tyrone, I always tell my kids they gotta wait for the green man…” I said once on the safe side.

“Don’t worry,” replied Tyrone. “I do that if my bus is there.”

Oxon Classy Council

Here’s the gig. I get to work this morning and receive an email from the Director of Adult Services, Oxfordshire County Council (OCC). It turns out they commissioned an independent review into LB’s death last year. And, for some reason, he’s decided to send it to us today.

Eh?

The email ends: As you know this report was undertaken and will be shared as part of a confidential investigation.  I would ask you to respect the confidential status of the report.  If you need to share the contents to third parties (other than your immediate family) then you should seek our written confirmation.

Eh?

It turns out they handed over LB’s health and social care records, without our knowledge, to a social care consultant.

He then interviewed various people, including LB’s teacher, before writing a report so riddled with inaccuracies and bias (the usual we did great, mum is unreliable/flaky rubbish) you might as well chuck it in the nearest skip. But then of course they won’t. It has already been shared with Verita and it will be given to the coroner among other people.

I can’t describe really what it’s like to find out that an independent review has been conducted into your dead son’s care without you knowing. Surely that’s the baseline of respect? That it details things like your kids’ dates of birth, and includes stuff like “SR cancelled the meeting”, when I didn’t, or “SR advised to contact the respite centre at Saxon Way. The records show that SR did not take up the offer”, when I did, but omits things like mentioning that the staff member who suddenly upped her game on the communication front did so because she was under supervision after we’d complained about the service.

Typical OCC slippery shite.

I spoke to the Deputy Director this afternoon who first denied sharing records despite the report stating: “Methodology: I have reviewed all the records held by the local authority for both Children’s and Adult’s Services…I have also reviewed copies of the Health Service RIO notes from 11 Jan to 19 March 2013 for the psychology and psychiatry service…””) and then suggested the reviewer was internal at that point because they were paying him. Astonishing. Howl inducing. How can people say and do such hideous things? He died.

By the way, OCC (and Sloven), if your strategy is to grind us down until we either slope off in despair or are destroyed, this was a cracking move.

Are you allowed to conduct an independent review of “the support that had been offered to LB and his family” without informing us?

Are you allowed to share LB’s notes with an external person without our permission?

What happens now an inaccurate report is being circulated?

A day trip to the people’s museum

I took the JusticeforLB quilt (or people’s artwork) to the People’s History Museum in Manchester today. An outing like no other. It’s going to be on exhibition there from 1-22 April.

Quilt responsibility is a pretty big gig.

Justicequilt-115

I set off with a good dose of fear this morning. This ain’t a bad thing. Cab to station. Deep breath. Biggest fear was forgetting the quilt. I waited for the train down platform from the typical chunk of passengers in a curiously quiet and peaceful spot in the sunshine. Nearly missing the train by absorption in our response to the Public Administration Select Committee stuff around NHS safety stuff. I got on board, timed the electronic doors to perfection and was allowed to sit in first class. Cross Country trains deserve a big shout out for this.

Justicequilt-116I was able to get a shedload (haha) of work done with the quilt safely above me and no (apparent) quilt peril opportunities for three hours. Malcolm, offering various treats over that time, gave me a cup of coffee and piece of cake and we got chatting. Turned out he used to work as an agency support worker at a learning disability unit. They had a staff ratio of 2 nurses/ 2 support workers to around 25 patients.

“Five patients and four staff? I don’t understand it. NHS? I think the NHS is great, don’t get me wrong, but… four staff and five patients?”

We said goodbye at Manchester and I went to get some cash out. With some giggling, the woman behind me held the quilt while I got my wallet out.

“Am I going to end up on one of those TV shows?” she laughed, balancing it carefully across her arms.

A station cleaner joined in asking what the quilt was. He too was as shocked as Malcolm when I told him.

“When I think about what people moan about…” he said. Shaking his head. “I mean I moan about money. But this…”

He took a postcard to show his wife.

Justicequilt-117At the museum I was taken down to the quarantine room. The person I was supposed to meet was in another part of Manchester because of a flood.

“A flood?” Gulp.

I left the quilt in the quarantine room after serious protestations of quilt care and carefully tucking the quilt smarts provided by Janet Read, chief quilter, on a memory stick with a lovely large Paddington Bear style luggage label inside the plastic covering.  I met various staff members in a place that just exudes people’s history. This is such a good venue for LB. Stan has always been ‘dog of the people’ and LB a history hound.

Just before I left there was mention of freezing the quilt.  Freezing? Oh boy. [Sorry Janet]. Frozen and freezing kept bouncing around my frazzled mind, including the Frozen cinema showing organised by Yellow Submarine tomorrow and our half arsed watching of Fortitude.

More reassurance from cheeky chappy guide on the way back upstairs. Frozen schmozen. Freezing is common museum practice. He asked me about the quilt.

“Wow.” He said. Visibly shocked. “That’s just shoddy.”

I headed back to the station. Then realised I lost my wallet. Eurgh. I retraced my steps and found it on what looks like the freezer in the quarantine room.

On the train back, later, I bumped into Malcolm again.

“Good luck with your case”, said he said, “I’ll look out for it”.Justicequilt-118

A sunshine and daffodil day

Day 6 of #107days again. Though we’re not really counting the individual days this time. That was last years extravaganza. And we would never want, or even hope really, to recreate such a spontaneous, unscripted, joyous and collective celebration. Taking awesome to new levels.

I couldn’t look back at what I’d written much about LB’s time in the unit this time last year. Even though we’d vaguely talked about filling #107days with these posts (we had no idea it would become such a phenomenon that we’d be splitting days between two or three people/organisations by the end.) Today I revisited the Day 6 post. Not sure how to describe what it feels to read such naive, misplaced optimism knowing what we now know.

day 6

Baseline assessment? Get LB active again? I had no idea that I was in the process of writing an account starkly capturing the continuing shiteness of provision for learning disabled people, despite the Winterbourne View meithering, at the time.  What I heard that day was a reiteration of how the unit had been described to us a few days earlier. A place in which patients are assessed, ‘treated’, while being encouraged to lead their everyday lives from the unit. School + ‘baseline assessments’ sounded bloody brilliant in the circumstances.

A sunshine and daffodil day.

The daffs are out again. Some things don’t change. And the magic of #107days bubbles below the surface. Thank fuck. We’re asking people to let us know what being involved in the campaign (in whatever way) has meant to them. Early responses have already brought tears, laughter and cheer to the Justice Shed. An antidote to the relentless justice path we’re tramping. Thank you.

 

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…

asda

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?

sloven1

Managing to meet the Minister

Justicequilt-92I met Simon Hughes, Minister of Justice, today. Eventually.

I got to the House of Commons with a few mins to spare before the 2.45-3.15pm appointment and found a great (really great) wedgy of lecturers queuing to get through security to lobby their MPs over college cuts.  I watched Big Ben eat up 10 minutes of meeting time in the static queue, took a deep breath and asked the people immediately in front of me if they minded if I pushed in to get to the last 15 minutes of my meeting.

“Go for it”, they chorused and I pinged down to the front of the queue, feeling like one of those bastard cars that refuses to get into one lane early on and barges in at the front. Unfortunately I got a bit off track once inside and ended up standing in the Lobby, greeting the lecturers, as they pitched up, handed over green cards and went. By now it was 3.05pm. I was clearly in the wrong place.

I took a photo of the clock. Feeling stressed/distressed/frustrated at missing my slot.

“Most people take photos of the ‘no photos allowed’ sign,” said a cheerful policeman, who then filled me in on some Lobby history.

Just before 3.15pm, I was ‘found’ and shepherded along to Simon Hughes’ office. We launched straight into a no nonsense discussion about inquests. His aide (?) reminded him he had to leave almost straightaway. They had a quick convo about ringing his next gig and explaining he was slightly delayed but would be there by 3.45pm.

The call was unanswered.

‘The Secretary of State? He’s just upstairs. You could nip up and tell him I’ll be along be along shortly. He’ll understand.’

Oh my blinky blonky blimey, I chuckled to myself. Was that scripted? Was that a genuine exchange? Really??

I don’t care. On the eve of #107steps to justice, the Minister of Justice demonstrated interest, respect and a genuine commitment to improving the experience for families in the coronial process. That’s pretty cool.

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.