The dream

JusticequiltLast night I dreamed that Sloven Health pitched up at LB’s pre-inquest review meeting and argued that his death wasn’t unnatural or violent to avoid there being a jury at the inquest.

That they still hadn’t disciplined staff 18 months on. I dreamed that they had been surveilling my social media activity from the time LB went into the unit. And written and circulated a briefing about my blog, the day after he died. I dreamed that they didn’t pay attention to the content of the blog, other than scanning for defamation nobbling opportunities. So they completely ignored the warnings I was providing around his seizure activity.

I was kind of momentarily relieved when I woke up.  I’d been dreaming. I mean we’re talking about the NHS here. The National Health Service. A publicly funded body built on the premise of equality of healthcare for all. Not some grubby, two bit, private organisation that couldn’t give a flying fuck about people.

Hind, foresight and the two Phils

Nico Reed’s inquest concluded yesterday. With the coroner making what appears (to a completely lay law person) an important statement. He overturned two of his own rulings to rule (re-rule?) that Article 2 of the European Convention on Human Rights was engaged on facts of Nico’s case. I’ll leave it to Lucy Series to kick off early thoughts about this and focus instead on what I do know something about.

The legendary Phil Gayle (and team) who had Sloven’s director of social care on their show today. Another Phil. Phil Aubrey Harris. A brief summary/set of notes/important points here from the discussion.

Money, morality and humanity

Apparently 20 minute checks written in a care plan are a guide. Not something that must happen. With a few people to be looked after by one member of staff “there is an inevitability that those checks are unlikely to be maintained“.

Wow.

There is (considerable) jiggery pokery in Sloven practice around hindsight and foresight. The necessity of frequent checking only apparently recognised ‘in hindsight’ (ie. after someone dies) despite being clearly stated in a care plan.

Wow.

Care plans therefore characterise ‘ideal type’ situations. The 20 minute check is something that should happen if resources weren’t a consideration. Because resources clearly are, this foresight/hindsight distinction leaves a pretty murky area around regulation/inspection. It’s difficult to observe the acting out of a care plan. Especially in the early hours of the morning.

Just help me out here, as a lay person, as someone who might one day have to use a unit like this, for someone I love...” said the wondrous PG wrestling with this gulf between care plan and practice.

It’s a guide“, says other Phil. “Based on individual needs, blah blah de blah…”

Was one member of staff to those four patients sufficient?” PG returned to, with a hint of impatience.

I think it probably was“, said other Phil.

Eh? The coroner rules that Nico’s death was possibly preventable because he should have been checked more regularly, but the staffing ratio was sufficient?

And there were other risks associated with Nico’s care.. said the Gman, without missing a beat.

Oh yes. These were known about. “There were plans in place within Nico’s support plans to acknowledge those risks and to mitigate them”.

Pah. You lost me. Is a support plan different to a care plan? Is a support plan actually acted on? Does anyone know what they’re talking about here?

The Gman moves on to ask whether things are going to change in response to what happened to Nico.

There follows a remarkable but largely unintelligible statement that seems to suggest (on the third listening) that Sloven are now determined that if they ain’t properly resourced by commissioners/local authorities to provide the level of care necessary “we wouldn’t take those [packages of support] on without some sort of challenge with the assessment teams or some sort of local authority or local authorities or whoever it is who is funding those packages”. 

My half arsed interpretation: Don’t blame us for the crap care we provide on the pennies you’re willing to spend. Or, we’re happy to rake in the spondoonies to provide ‘care’ on a shoestring until something catastrophic happens. And then, ex-cer-use-me. Don’t come banging on our door…

Overloading the person to staff ratio at  minimum cost (thereby erasing any consideration of a life that has a sniff of fulfilment, contentment, enjoyment, achievement or productivity) as common practice until an NHS or private provider is dragged under the spotlight. And then offering a half arsed ‘you should have coughed up more’ defence.

What a sordid, sad and shameful situation.

In the final minutes of the interview, the Gman asks why Nico’s family were not told about the circumstances of his death for over a year. More bluster. The Gman, clearly affected by what he’s hearing says;

With respect, other Phil, you use the phrase ‘with the benefit of hindsight a lot and you use it about decisions that anyone else would regard as common sense..'”

He nails it here. Common sense engagement with an extraordinary situation. Stripping away ‘learning disability’ and engaging with what has happened at a human level. Drawing on common sense. On everyday stuff. That we can all relate to.The Gman called it today. As his show has consistently done in relation to LB.

Until people can chuck away their blinkering lenses of learning disability, ‘challenging behaviour’ and other labels, we ain’t going to get anywhere. We are talking about people, experiencing situations that if they weren’t labelled as ‘learning disabled’ would be called out in a multitude of ways.

And Sloven. As ever, you are fucking shit.

 

 

Sloven and the CCGs

So here’s a mid-week quizette for you. The review into deaths in Sloven provision is going to have an expert panel to “review all the information and make recommendations on any further action required”.

Do you think this expert panel will include:

(a) Experts in reviewing deaths, particularly those occurring in mental health and learning disability provision?

or

(b) Representatives from Sloven and the two sets of commissioners on their patch (Oxon and Hants)?

Yep.

(b) Sloven and the CCGs. Sounds like a craphole Christmas No. 1.

Needless to say Meeting the Mazars was duly logged in The Little Book of Crap Meetings, under ‘Drenched with Incredulity’.

Rich walked out. After saying exactly what he thought of the death review so far. I caught the train to Glasgow.

Where it pissed down.
Justicequilt-3

Adventilicious

Meeting the Mazars didn’t really pan out as we were expecting. But here I want to focus on the positive stuff. The #justiceforLB advent calendar kicked off last week and really… how bloody brilliant is it?  Nine days in and we’ve had three films; Tom and Rich chatting about LB, reflections from Santa on the #LBBill and a fab new (proper) film from the My Life My Choice crew slamming home the message that disabled people aren’t benefit scroungers. We’ve premiered some of the Postcards of Awesome, featured some iconic campaign images, been on the road to do the #hairhack workshop, had a #WeLDNs twitter chat about the Bill and crowdsourced pictures of the #yearofthebus trail in London.

And we’ve announced that the Justice quilt will be exhibited at the People’s History Museum in Manchester from 1-22nd April 2015. This is so unbelievably fab that we almost can’t believe it in the Justice shed. Chunky Stan has always been ‘Stan, dog of the people’ and LB had such a love of history that, along with the Rodgers school buses, the Earthline Scania heavy haulage trucks, the police involvement and his rocking legal team, the pieces could not fit together better for the quirky young dude with a smile that lit up the universe.

Meeting the Mazars

Tomorrow we have a meeting with the Mazars who have been commissioned by NHS England to undertake the review into all deaths in Sloven mental health and learning disability provision since 2011.

It’s probably worth flagging up some of the CIPOLD findings because they are so off the scale shocking. On average learning disabled women die 20 years sooner, and men 13 years sooner, than the general population. 22% of the sample were under 50 when they died.

Astonishing statistics. And then this:

death review

Despite 43% of the deaths being unexpected, they were nearly 10% less likely to be reported to the coroner. Wow. Howl.

A bit of historical context

I suppose it ain’t rocket science to work out why learning disabled people die earlier or why their deaths seem to be of less consequence than the deaths of others. In 1952, A.F.Tredgold wrote this in his cheerily named Handbook of Mental Deficiency  only a few years after the end of WW2;

image-2

(Taken from David Race’s Learning Disability – A Social Approach.)

Forty years earlier, University College London set up a Laboratory of National Eugenics part funded by Francis Galton. Galton, who coined the term eugenics, wasn’t alone in his concern about the ‘feebleminded’ breeding like rabbits and decimating national fitness. A genuine fear of gene pool dilution (Wellcome have a fab digi-archive of The Eugenics Society documents which are kind of breathtaking). It was an influential movement for some time (and arguably still is, albeit less explicitly with that pesky term carefully hidden behind layers of more ‘acceptable’ language) involving a range of public figures including Beatrice and Sidney Webb, HG Wells, William Beveridge, George Bernard Shaw and John Maynard Keynes.

We’ve never really moved beyond this perception of learning disabled people as deficient, worthless, burdensome and a problem. Despite a steady stream of policy making and legislative change. It doesn’t matter that there are small pockets of brilliance dotted about the country if most learning disabled people lead constrained, contained and impoverished lives. Waiting for an inevitably premature death. With little accountability. And no imagined future.

So. A meeting tomorrow with the Mazars. Maybe another step forwards in making visible (unconscious?) practices that demonstrate the dismissal of some lives as relevant or human.

Leading to meaningful change? Nah. Why would it?

So wrong

Tonight I heard the saddest news. It took me back to a train journey. From Canterbury to Oxford over three years now. When I heard that LB’s classmate had been sectioned and taken out of county to a unit miles away. Aged 16. I had a right old blub on that train. It seemed so brutal. So wrong. My heart broke for the cute tot who had legendary status in our family folklore. And his family. How could these kids be failed so badly? Despite the gargantuan efforts of parents?

And then LB went into a unit. With an unimaginable outcome.

LB died 17 months ago now. And there is still no effective support. Services/professionals miss the point, don’t have the knowledge, skills or ability to read the writing on the wall, or respond to it.

Time to call it as it is. Surely?

Timidity and the Yellow Brick Road

Been chewing over stuff this week, given the pre-inquest review (howl), launch of the Bubb report, accompanying media coverage and commentary. (See Chris Hatton, Matthew Smith and Rob Greig and ace coverage by Saba Salman on her blog and in the Guardian.) It was also the CQC 3 Lives* follow up meeting.

Relentlessly unchallenged crap practice and helplessness consistently crop up. We know that ATUs/some supported living settings are spaces that leave human rights on the doorstep. Containing people for years in hideous ways the public only find out about when something goes wrong. Those in the know know, of course. The frontline staff delivering nosh, medication and often little else, clinicians signing forms, local authorities/commissioners/NHS England shelling out small fortunes, and tribunal members. They all know. We all know really. But only give it some thought when the next catastrophic event crops up.

And then what happens? Talk, as always. Lengthy, wordy, jargon filled reports and meetings with the same old suspects, many of whom have screaming conflicts of interest. 

I had a quick shufty at a couple of charity accounts this morning. Again, a whole PhD to be had exposing the pomp and self congratulation around commitment and involvement to the Winterbourne Concordat by various organisation in the past coupla years. Quick to grab their moment in the brief sunshine of planet Concordat.  I wonder how many charities will record in the 2014 accounts that it was an almighty failure. And their commitment amounted to, er, nothing.

In among my rambling, exhausted thoughts, timidity kept cropping up. And that bloody lion in The Wizard of Oz. Tom was in a school performance of this a couple of years ago. LB, generally a big fan of any type of production and extravaganza, took offence to the constant repetition of the chorus.

“Not that fucking yellow brick road AGAIN!!!” he roared. Before Rich took him home in the interval.

Timidity is a kind way of characterising all I see, hear and read around learning disability provision these days. Timidity underpinned variously by:

    • a lack of understanding of how to make change/what to do
    • a lack of interest/commitment
    • incompetence
    • conflicts of interest
    • concerns about self preservation/future career paths

Well timidity, for whatever reason, is going to change fuck all. And until people with some influence and power grow some, we might as well all give up, creep back to our respective holes and get on with the lives we are lucky enough (or otherwise) to have.

I’ve always thought LB was saying exactly what most people in that packed, hot hall thought that evening. He was just fearless enough to say it.

*Lisa is now shopping weekly at Tescos and been to Matalan.

The Sloven Book of Dirty Tricks

Pre-Inquest Hearing yesterday. And Sloven added a new chapter to their Book of Dirty Tricks. Delay, as always, was a Sloven feature. They circulated their submission 3.5 hours before the meeting started. Classy little technique. Reading it at home, and weeping, I thought back to the meeting we had with David Nicholson where he said something about the Trust not contesting LB’s death (I mean how can you, really?)

How can you? Well Sloven, turning up en masse with a barrister, a solicitor, their in house legal person and the now too familiar medical director, gave it a go. In an obscenely offensive move. They argued that there should not be a jury at the inquest because LB’s death wasn’t – wait for it – violent or unnatural.

Yep. I ain’t joking.

It’s indescribable how awful it is to read such dirty little, lying, contradictory, game playing, rubbish about the death of your child. This is the NHS?

Note to Sloven and team. If you fully accept the findings of a report stating that a patient died a preventable death, don’t pitch up in a courtroom setting six months later and claim he died of natural causes.

Complete scum of the earth stuff.

The coroner dismissed it straightaway.

The Pre-Inquest Review

Seventeen months after LB’s death, the pre-inquest review hearing is taking place tomorrow afternoon. In a room in County Hall, Oxford. The building where I used to attend meetings about provision for disabled kids in Oxford. Transport issues and cuts. The Parents Advisory Group.

There’s not much to say at this point. I’ve said it all on these pages. In various ways. Pretty relentlessly.

A tiny part of me still thinks ‘Really? The NHS? Behaving like a bunch of bullyboy thugs? Nah. Our beautiful dude died. He was young, fit and had his adult life ahead of him… Such a terrible, terrible preventable death would lead to care and concern, not cover up, delay, crap and deceit. Surely?’

A tiny part the size of a pin head now.

Tonight, we’ll be thinking about LB. In all his legendary awesomeness. And the comfort he felt in doing things his own way. Before he grew older and stuck his toe in a new and empty world of ‘adult services’. Where one size fits all and he wasn’t allowed to be.

Like so many young people like him.

old pics (8)

I bloody love and miss you. xxxxxxxx

The week that was

Seems wrong to end this last week with a rant (see previous post) so will do a quick summary of what was, considering all things, a pretty fab week. Monday was LB’s 20th birthday. Hoping that life won’t become a series of ticking off his birth day in a desperately desperate way, we managed to pull it out of the bag accidentally. The kids (and Jack, Rosie’s bf) all pitched up for a nosh up on Sunday. I probably bored them shitless with my teary ‘if there’s any day in a year that it would be bloody cool to see you all it’s LB’s birthday’ ramblings. We also got to hang out with the cutest little kids on the block in the afternoon.

On LB’s birthday, Rosie, Owen and I went to see the remaining poppies at the Tower of London.

Justicequilt-56

You can’t really call things like what to do on your dead child’s birthday (sorry). It’s so unknown and beyond distressing but, like last year, this was a cracking choice.

LB loved the Tower of London. It was the scene of one of his most memorable birthday outings and the poppies were gravely moving and powerful. A strangely comforting setting.
Justicequilt-57

We had a good time. The sun came out. And it was lovely to see Rosie and Owen bantering about. We recreated the iconic photo from that day. Then piled into the gift shop to buy bus stuff. We got Rich a bus tie to wear to the inquest (a grower, hopefully) and a brilliant London bus decoration (to be unveiled during the #justiceforLB advent calendar).

Phew.

On Wednesday morning we had a meeting with Norman Lamb about the #LBBill. It was a 9am kick off which we stupidly spiced up with some rush hour risks.
Justicequilt-61

But we all got there on time and Norman Lamb (or Lamp as the Aspland kids called him this evening) was a delight. Committed and trying to find a way through the seemingly concrete barriers to change.
Justicequilt-62

Friday, another trip to London for more #LBBill chat with Disabled People’s Organisations. We kind of expected, and were prepared for, some challenge about our motivations and actions. As it was, we were just a bunch of people, all wanting similar things, discussing what these things were and how to make them happen. Supported by crowdsourced drops of brilliance.
Justicequilt-60

Justicequilt-58