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.

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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.
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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.
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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.
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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.
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“Errors, omissions, distortions and false claims”

Sloven board meeting papers were published this week. Ahead of the next meeting on November 25th. (Same day as our pre-inquest review meeting). Jaw dropping nuggets. As ever. This bunch of festering toe rags never fail to deliver.

First, the off the scale of inappropriate powerpoint that surfaced a few weeks ago – Could it happen here – is actually a quality improvement toolkit. Developed in response to ‘the risk of not learning from incidents’. Yes. I know. Personally this would be enough for me to whip their licence to kill operate away right now but we know there is no straightforward route to accountability.

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The ‘owner’ of this risk in Sloven Towers is the aptly named Medical Director (Quality), Martyn Diaper. The ‘toolkit’ uses what happened to LB in a tasteless and completely pointless way (there ain’t an awful lot to learn about people with epilepsy and the dangers of bathing after all) and is crap throughout. But hey ho. It’s going to be launched at the Sloven quality conference in December….

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(Bit of an aside really, but judging from the programme and title, you’re doing pretty shit really. Not sure you need to set aside a day to discuss it.)

I assume Could it happen here is being ‘launched’ in the learning disability service user story session. Howl… how fucking dare you??? How fucking dare you?????? Sickening to think someone will stand up in front of an audience and present this pile of offensive crap. For so many reasons. Not least because LB wasn’t a ‘learning disability service user’. He was dearly loved young man with his whole life ahead of him.  And nothing went fucking well. How could you even begin to suggest it did?

Please don’t reduce him to some sub-standard, sloppy case study in a pretend learning exercise, in a shonky little day, top and tailed with yoga and footprints. 

Deep breath.

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Yep. The fuckers are actually thinking of putting in for a BMJ Award.

Setting to one side the seedy, commercial angle to the whole NHS award scam/industry, brilliantly captured this week by George Julian, how.the.hell can a Trust who allowed a fit and healthy young man to, er, die, and who continue to be the subject of a police investigation, even begin to think about awards?

Truly sickening.

Oh, and one last thing… The Patient Association published a cracking report about the role of the ombudsman andNHS complaints this week. And there, on page 17, (thanks @Minh Alexander) is a terrible story about a young woman let down by Sloven in 2011.

The account could be a word by word account of what we’ve experienced; insensitive and unsafe care, not listening to the family’s concerns and a response from Sloven containing ‘significant errors, omissions, distortions and false claims’.

More evidence of Sloven form. So much evidence of Sloven form. How they learn fuck all, cover up at any cost and crush families along the way.

Could it happen here, they ask.  Why wouldn’t it? Why wouldn’t it?

At least two rooms without a view

A bizarre bit of journalism popped up in the Sunday Times last weekend. About Lisa who was locked in a room for 9 years in an assessment and treatment unit (ATU) until she was ‘discovered’ by the Challenging Behaviour Foundation (CBF) ‘expert by experience’ on a CQC inspection. Much is made of the role of the CBF in this short piece. Not sure we need Viv Cooper, CBF CEO, to point out this is ‘deeply concerning and shocking’. It’s also a bit bizarre that the Sunday Times ‘can reveal’ this horrific story when it was published by the CQC last summer in their 3 Lives report.

But that ain’t all on the bizarre menu.

The story moves on to discuss Stephanie Bincliffe who died in an ATU (privately run by the Huntercombe Group) aged 25 and weighing almost 26 stone. Her inquest is ongoing. Why someone who died [died] and is (well should be) currently ‘news’ is mentioned after Lisa (who should have been but never was) is baffling.

But that ain’t all that is baffling.

Other than The Sunday Times, there has been no media coverage of Stephanie Bincliffe’s death despite the inquest being a public event. She was locked in a room for seven years (like Lisa). The Sunday Times reports:
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Two women. Two rooms. And media interest worthy of a local break-in in a disused warehouse in a disused retail park (earmarked for building a new, large scale, residential facility for learning disabled people perceived to be bothersome).

I can’t stop thinking about Lisa and Stephanie. I’ve really struggled with LB’s 107 days in STATT. 107 days. Howl. I battered Rich’s ear yesterday trying to remember what holidays we had in the 9 years before LB died. How could someone be locked in a room for years? In a health unit supposed to treat and assess? Howl.

Both Lisa and Stephanie had their ‘care’ commissioned. Both were sectioned which should involve a whole raft of built in processes/checks/regulation. Involving health and social care professionals and commissioners.

When I first heard Lisa’s chilling story at the CQC event back in February, David Harling who talked about it, used a photo to illustrate what a suite at the Ritz (or some other swanky London hotel) looked like at a cost of £12,600 per week.

I’ve googled and found this little baby for comparison:
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The money is irrelevant in many ways. We’re talking people’s lives. But it isn’t. The story woven around these bothersome patients who need ‘care packages’ so off the scale of expensive must involve collusion across a whole range of health and social professionals/NHS/private providers. £12,600 a week? Really?

And, ironically, the real cost of the (anti) care provided (a bit of hatch opening, pill pushing, hair brushing from a distance and a staffing ratio of .001? to 1) costs fuck all.

It stinks of a win win situation financially for the provider (NHS or private). A level of ignorance on the part of commissioners. A further battered health/social care budget for learning disability provision and a complete lack of care or interest across the board.

People who have committed no crime but are such a menace that locking them up for years is ok, even when they, er, die. Aged 25.

Moving quickly on because there really ain’t nothing to see in this room….

What role do key charities (in this case  those originally set up by families to improve the lives of their kids) actually play? And what do they actually do? And why?

Tumbleweed.

Or worse. Clearly.

NH-Kafka-S and smoking mirrors

A response to our question about staff disciplinary actions. From NHS England. At long last. We’ve pressed for information about this endlessly. I’ve lost count of how many tweets, bleats and rants I’ve done/produced. Sorry to be so relentlessly tedious. I’ve bored myself.

But hey. What a response.

“1 member of staff has left the trust and has been formally referred to the NMC.

Disciplinary hearings for 3 members of staff will be held in December. This has been delayed as we previously understood that these would take place in October.

2 junior staff have been investigated and have returned to work under supervision, following additional training.

The doctor involved has left the trust, as you are aware. We believe that they are no longer registered in the UK. We understand that the GMC are carrying out their own process in regard to this doctor. I believe that Sara Ryan is aware of this.

The duration of time that this is all taking to conclude is very regrettable. The Trust have acknowledged this and apologise for it. They have explained that some of the staff involved have had periods of sickness, which has resulted in their cases being unable to be progressed. There was also an issue of staff being subject to Ridgeway policies, which were not wholly fit for purpose and subsequent negotiation with the staff representatives to agree a way forward.”

What the fuck is going on? Have Sloven got some sort of royal family type force field around them? How can the response to ‘Can you let us know where the HR investigations are after 16 months’ come back framed in complete fuckwattery;  ‘We previously understood’, ‘we believe’, ‘the duration of time that this is taking to conclude is very regrettable’

This is the sort of language used when people complain about crap food, uncooked chicken, buying mouldy veg and flakey 3G coverage. LB was a fit and healthy young man with his life ahead of him. Please don’t reduce his death to the equivalent of a consumer complaint. 

So. As ever. Questions/comments. Questions we shouldn’t be asking.

Why has it taken so long to get an update on the above?
Why do the numbers of staff involved change on every iteration?
Why are the disciplinary hearings to be held in December? LB died 19 months before this. How can this process possibly take this long?
You know I’m aware that the GMC are carrying out their own process about the doctor because I fucking referred him/her. Because no one else would.
The time taken isn’t ‘regrettable’. It’s barbaric.
We haven’t had the luxury of taking ‘periods of sickness’ because of what we’re up against.
Don’t pull the ‘Ridgeway policy’ card. You took over this organisation knowing the issues involved.
Given crap all has happened in over 16 months, what a meaningless statement from NHS England about pressing for progress.

And, as ever, you absolute fucking bastards. Typical bastardry by Sloven, half arsed, lily livered NHS England response, complete duck out by Monitor, behind the fence shivering from the local authority/clinical commissioning group and some action by the CCQ.

What an absolute shambles.

Approaching LB’s birth day

It’s LB’s 20th birthday on Monday. Howl. Howl. Howl. Howl. I love it that the kids have all been thinking and planning around it. Howl.  I’m unable to do much more than appreciate their thinking and planning. That they are thinking and planning. I don’t say much (sorry kids) and scuffle off into a different space at home. Or work.

Thinking of LB’s birthday when I’m out, as I do at the mo, is a Sooty tears situ. I’m pitched straight back to those early baking July days, and earlier. I walk through town or sit on the bus with tears running down my face.

Funnily enough, for all the rules of social interaction I’ve been fascinated with since becoming a sociology student years ago, I’ve learned you can actually have a good old public weep quite privately. Maybe it’s because of the digital focus. We can all be online now and blank out (deliberately or obliviously) the ‘messiness’ of what might be happening next to/around us.

The birth day space is one of such intense pain that I can barely breathe, function or do anything with. How can you have a child and not celebrate their birthday? How does/will this work over coming years. When LB stays 18 and we all grow older. Without him. Howl. What do you do with such an intense longing/missing for a person who is such an integral part of you?

At the moment my mind calendar is pretty much reduced to two dates; death day and birth day. All other ‘celebratory’ dates (birthdays, Christmas, Easter, etc) are irrelevant. I know I have to move beyond this focus (even though I don’t want to). I know our (pretty legendary) kids have and deserve their own space to do and be and shine and be loved for who they are. Nothing should take away from this. But it’s hard. It’s so bloody hard not to be caught up in and devoured by the intense pain of missing and aching for the cub who was picked off, carelessly and callously, by a publicly funded body. A body that exists to ‘care’.

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How the fuck in fucking hellsters is LB not alive?

The AGM, the Godfather and happiness

It was the My Life My Choice AGM this afternoon. It was dedicated to LB and the theme was happiness and laughter. It kicked off with a bit of spontaneous dancing to Will Pharrell’s Happiness. I ain’t a spontaneous dancer in any way but what a cracking way to start an AGM (or any meeting). There followed a series of ‘official’ (dosh and voting new trustees) and informal (laughing yoga and chatting about highlights of the year) bits. For a lengthy meeting, the organisation/design was exceptional.

I had a slot in which I gave a brief update about #justiceforLB and the ways in which MLMC had worked with/supported us. I forgot to copy my slides onto my memory stick but it didn’t matter. They’ve been so consistently supportive it was easy to recount the many examples.

There were refreshments and party poppers. New trustees were voted in. Disappointment among unsuccessful candidates managed by similarly disappointed candidates or the new geezers.

I live tweeted bits of the meeting. Michael ‘the Godfather’ Edwards was there. I was a bit in awe really. I remember reading an article about him years ago in a Sunday mag. How, in our local day centre, he spent his days sorting something like nails into different boxes. If they finished sorting before the end of the day (mid afternoon) the boxes were emptied back into the pile for re-sorting.

This story stayed with me. An almighty howl of frustration. LB was a pup at the time. I was determined he wouldn’t lead a stripped out, colourless, pointless life.

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Michael was the ‘celebrity’ in the room. Held in warm respect. A lot of young dudes from the local college were present for part of the meeting. Some fidgeting and nudging. Some eye rolling.They chipped in. A student was voted one of the new trustees.

There were very few ‘professionals’ present. I googled the Michael Edwards article when I got home. It was from 2001. I was surprised it was so recent. Jan Walmsley was there today. As she was in 2001.

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A piece of my heart broke a tiny bit more.