Category Archives: Death

The JT Show

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For some time now, we’ve had a bit of a beef with Mencrap in the Justice Shed. Not least because they continue to make the extraordinary claim to be ‘the voice of learning disability’. A claim so inappropriate I don’t really know where to start. I’ll just leave it at their failing service provision (details of which are buried deep on their website…)

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Well, and the ludicrously extravagant Strategic Executive Assistant to the CEO post currently being advertised to do the work that the CEO should probably be doing herself.

George has written about her experiences of working for Mencrap and, more recently, of daring to challenge the organisation on live television. Post Victoria Derbyshire, there was further approbation from a couple of parents on twitter. Including a baffling post about ‘Two mums’ that seems to accuse #JusticeforLB of being the equivalent of a Young Ones tribute band. Ho hum.

Anyway. Back to today. The Telegraph (I know) ran a spread about Mencrap CEO, Jan Tregelles (JT). This coincided with Mencrap’s Learning Disability Week and was published in their Lifestyle/Women section.

What did we learn from this article?

JT dined at the Sloane Club that day (a reference for typical Telegraph readers) and “Mencrap’s about giving people with learning disabilities the opportunity to experience life to the full”. She doesn’t mention it but I hope the learning disabled people she took with her enjoyed the “posh lunch with the great and good”.

The new Mencrap campaign faithfully reflects JT’s vision for learning disabled people. Such power and omnipotence. Blimey. I hope she’s using it well….

How are you using it JT?

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Oh boy. This generated some sandwich related mischievousness on twitter. Not surprisingly. From the Sloane Club to cheese sarnies down a well in the space of a few sentences*.

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JT could not peg her true colours to the learning disability gravy train she is riding more openly. Empathy? What about empowerment, autonomy, civil and human rights… ?

Sadly, the article doesn’t end there. It rattles through clothes, grooming, family, number of marriages and volunteering at Citizen’s Advice where something (not revealed) ‘clicked’ and bounced JT to Mencrap where she became PA to the ‘director’. From there it was PA to CEO.

And a series of statements so blinking depressing/enraging:

I just wanted to do something that I wanted to do. 

I would have done it for nothing. 

I could do support work now though.

Why, when you get on a bus and there is someone a bit odd are you instantly fearful.

We need to equip people to see someone with a learning disability as a person…

Now Jan. I know you’ve blocked me and you ain’t interested in anything #JusticeforLB has to say but seriously, if you really want to make a difference, you are going totally arse over ‘immaculately polished’ tit about it.

  • Public attitudes really ain’t the main problem. The establishment, including Mencrap, is.
  • In Learning Disability Week the focus really ought to be on learning disabled people.
  • You should have a look at Learning Disability England. This fledging organisation has a more legitimate claim to the voice of learning disability already.
  • I really wouldn’t do support work if I was you. I’m not sure you’d be very good at it.
  • There are some serious issues around what Mencrap as an organisation do. Not least the services you provide. If you need the support of a Strategic Executive Assistant perhaps the focus of this role should be less about public relations, media and project management objectives and more about actually improving people’s lives.

But what do we know?

Postscript: To those who think it’s heresy to critically challenge ‘the voice of learning disability’, I say do one. After you’ve done the sums.

*Turns out sarnygate was freeloaded from this Brene Brown Tedtalk… (thanks to  FionaQuigs for the sharp spot).

The duck boat and turning tides…

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It was the launch of Learning Disability England yesterday afternoon. In the House of Lords. With afternoon tea. I came out of Westminster station with the streets flooding and the London Duck Tour waiting by the lights. Ooof… One of those moments. My mum and dad took LB and Tom for a day out on the duck boat in the holidays. Years ago. I’ve not seen it since (thought it had been disappeared).

Another sign, I thought. As the sign bucket overflowed.

On to the launch. And Learning Disability England. Guts, passion and punch also by the bucket full. A membership organisation for pretty much everyone (£12.00 a pop for membership for individuals), democratically run; e.g. no big decision will be made unless 1/3 of the vote is from learning disabled members… Wow. A wow moment that so shouldn’t wow in 2016. Underpinning principles; challenging, empowering, being creative and putting learning disabled people first. Wow… 

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The various pieces of LDE are just brilliant. Colourful. Random. Expert and passionately committed to improving people’s lives. The rain stopped…

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After nosh, tea and chat, the ‘speeches’ (brief, to the point, heartfelt and led by Gary Bourlet) included Jane Campbell who held her hands up in acknowledgement and recognition that the UK disability rights movement just didn’t think about learning disabled people back in the day. (Physically) disabled people were too busy fighting the civil rights fight.

It was an emotional event.

I remembered another afternoon tea at the House of Commons type jobby. Way back before the duck boats were recommissioned. The Mencap Breaking Point report launch. A small group of (uppity) families travelled by the train from Haddenham. We got through the day, kept a lid on the excitement, stopped a stampede on the cake table and managed to calm down a cab driver on the way back to Marylebone after LB announced there was a bomb in Big Ben… We were very much the mint chocs that come with the bill that day. Meaningless and typically tasteless trimmings.

Hearing Jane Campbell put her hands up to an omission of non inclusivity (everything about us without us…) in a diverse crowd of people, made me think how far we have come. Then that blinking boat went past on the river. Twice. In one day. A reality check.

Bring it on Learning Disability England. We will be supporting, cheering and challenging.

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The magic wand

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Friday afternoon I left work mid afternoon and went to the cemetery. The outcome of the ‘settlement’ reached on Wednesday was impossible to make sense of. I just kept crying. On the bus home I received an emailed letter from Lesley Stevens (Sloven Medical Director). About the unethical study they are conducting into families experiences of their death review process. The letter inviting people to take part is being reviewed and revised by three ‘service users’, the Health Research Authority have said no ethics approval (or ethical thought apparently) is necessary and Stevens defends the use of the questions being asked of bereaved families (e.g If the review process had been perfect – if it had been everything that you would want it to be, what would it have looked like for you?) with reference to the “Magic wand” question:

“if you had a magic wand, and could have three wishes granted…” (see Verma, N., (2014) Appreciative Inquiry: Practitioners’ Guide for Generative Change and Development) and the standard Solution Focused “miracle” or “future perfect” question: “Suppose a miracle happened tonight?” (see Jackson & McKergow (2002), The Solutions Focus: The simple way to positive change).”

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I read the letter. Blinked. Read it again. And bizarrely (after all this time) realised that Lesley Stevens and a sizeable chunk of the Sloven board will simply never understand (or refuse to understand) that LB died. Or engage with what #JusticeforLB has revealed over the past three years. The burying of the agreed public statement in a PDF, off a link from the Sloven news page, demonstrates the same old, same old, contempt and fakery despite an apparent “successfully mediated settlement” reached on Wednesday. A point not lost on others…

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This afternoon I sorted out some photos for Open Democracy who are going to publish the public statement as a word document so it’s permanently searchable online. [A PDF is not…]

As I did, I thought again about Steven’s reference to “a magic wand” or “a miracle” happening. And wondered [again]… how can these people possibly be in charge of an NHS trust? Still.

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The settlement

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Yesterday was mediation day. As part of an action against Sloven about LB’s right to life being breached under the Human Rights Act*. The date was agreed a while back and papers were to be submitted to the mediator seven days before. Sloven submitted nothing. We got more tense the closer it got and by Tuesday night, Rich and I were pretty much in pieces, firing off random, belligerent emails to our (wonderfully calm) solicitor and pacing round the house. Necking wine.

I can barely remember the journey to London first thing in the morning. My rage at what happened to LB, what we’d been put through by Sloven and dread of the day ahead consumed me. Rich listened to music.

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The meeting was held in Doughty Street Chambers and there were three rooms. One for us and our legal team, one for the mediator and one for Sloven and their group (of several people). For the rest of the day, we sat in a big, very warm meeting room with a view, tea, coffee, water and wifi. The mediator came in and out. Our legal team went out and came back in. The sun went in and we waited.

 

At 2.30pm, the Sloven debate started at Westminster Hall. We watched parts of it in between discussions. I half watched the rest of it with the sound off. Following the tweets and texts from a mate. Sloven were getting a deservedly intense and critical panning. On the floor below and over to the left of us, their Chief Operating Officer, another staff member, their solicitors, a partner from their solicitors firm, a barrister, and a NHS Litigation Authority bod sat.

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Mid afternoon there was an enormous downpour. A get people off the streets type downpour. No umbrella could withstand the ferocity and that amount of rain. The atmosphere in the room pretty tense as deliberating and discussion continued. Andrew Smith, MP, was clearly articulating the depth of Sloven failings on the muted screen.

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Eventually, agreement was reached. Seven hours after arriving we left the chambers and went for a drink in the pub across the road. In sunshine. It was hard to make any sense of what was agreed. A good outcome apparently. I just felt deeply sad and a bit odd.

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There are two parts to the settlement.

I’ve woken up feeling as sad and odd as I felt yesterday (with a layer of new exhaustion). The statement is very clear and, given everything that’s happened [he died...] is a form of ‘vindication’, if that’s the right word, without meaningless apology. The money? It was never about money. We’ll talk about that when the kids are all here together in July.

One of our lovely nieces, Clare, messaged earlier asking ‘What does it mean for the campaign?’

Nothing really. This human rights part was never part of the Connor Manifesto so it’s business as usual. Just one horrible, ‘gruesome’ as someone put it yesterday, process done. None of this should have happened.

*We had to make sure the judge could not look back, if the ‘case’ reached court, and say we had turned down any reasonable ‘offer’. If s/he thought we had, we ran the risk of having to pay Sloven’s costs and (I think) being fined.

An inhumane battering

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I came across this letter sent to some disability activists by an Oxon County Council commissioner again today. Took my breath away. Again. A vicious and ill informed assault. Why?

I’ve been repeatedly vilified as LB’s mum. By senior (white, middle class) people who should not be working anywhere near health and social care. To save their own backs. Their salaries. Their status. Their fakery around their sense of who they are… In a sustained and nasty way.

Just one section of the commissioner’s letter:

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[Here’s one of the posts I wrote a week or so before LB died: Am I mainstream now, Mum?  [Howl]]

Have to say, if any OCC or Sloven staff member wants to suggest to my face that I was ‘reluctant to have LB back’ I’ll not be responsible for my actions. I loved that boy more than life itself. We all did. And always will. He was the family rule breaker. The comedian. The gentle and funny guide to different ways of living and being, with a wisdom we didn’t always recognise.

He was a fucking school boy…

Can you begin to imagine what it must be like to read the above extract? From a letter leaked to you a year or so after it’s written and circulated to who? To know you are being bad mouthed in all sorts of NHS/social care circles because some jumped up Trust, whose eyes were bigger than their bellies, were able to feed off a weak Oxon joint commissioning set up. Take over the Ridgeway. Leave it to fester…And your child drowns alone, locked in a bathroom, as an outcome?

Don’t you ever suggest I was reluctant to have LB back. If you do, have the guts to say it to me. Not circulate it in sneaky, sordid communications among NHS/LA corridors and wider. And to anyone who receives such tripe in their everyday work…. You can always call it out, you know. Shake off the stupidity, malaise and laziness and recognise/acknowledge that families aren’t the beasts they are painted to be.

As Tom, 16, said;  “When a mother tells you she’s sure her son’s had a seizure, he has.”

You stupid, self serving, arrogant, barbaric fuckers.

 

 

 

Dirty dealings and the Sloven gravy train

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I wrote this filthy lucre post two months ago. About the Slade House site and rumours that Sloven are selling it and heading back down south with millions in their grubby (and negligent) paws. With the naivety (and relentless optimism) that has characterised #JusticeforLB though, we sort of believed Mike Petter’s (written) assurance to My Life My Choice:

“If it is sold by Southern Health, the money will go back into Learning Disability Services in Oxfordshire. If somebody else sells it, they might have a different idea.”

At the time it seemed odd to say ‘if somebody else…’ Mmm.

Naivety and optimism has taken a kicking tonight with the following unravellings and realisations:

  1. DocHawking tonight mentioned sale of the land by a private company; a sneaky bit of asset transfer which absolves Sloven [only in the eyes of devilish monsters] of ‘selling it’ themselves.
  2. Petter has gone.
  3. The Sloven board meeting tomorrow has a secret agenda item Declaration of Surplus Land/Property.

These, in turn, leave us wondering (again):

  • Why did Sloven want to acquire the known to be failing services run by the Ridgeway Partnership in 2012?
  • Why did they do zip all about improving these services or even being visible in Oxfordshire after the contract exchanged hands?
  • How much of a draw was the chunky Slade House site/land next to a recent development for Oxford Brookes student accommodation, within the Oxford ring road?

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Oxfordshire has had to endure failing learning disability services for over three years now. It cannot be possible that the resources the county have can be pillaged by a bunch of chancers. (Aided by the stupidity of Oxfordshire County Council and the Clinical Commissioning Group). Nah. No fucking way.

 

Rebel engagement

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People, patients, self advocates, families, picnics. A crowd sourced room (after Tim Smart pulled the plug on the extraordinary board meeting with a threat of legal action).

An opportunity for the Council of Governors to meet the public and listen. They all had the date in their diaries after all…

Peter Bell, Arthur Monk, John Green and Richard Mandunya we salute you.

 

Photos, postcards and a meeting postponed

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We found some old photos yesterday. And a postcard LB sent to Stan in 2008. Tears, chuckles and family banter. The postcard is addressed to Stanley McRogers, LB’s name for Chunky Stan. And pretty vague address details. How the hell did it get here?

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We decided it probably arrived because of the wonderful, intuitive work of a postman we had for several years. A postman who collected Marilyn Monroe memorabilia.

Tonight we found out the extraordinary governors meeting organised for 17.5.16 with a controversial agenda has been postponed. The official statement from Tim Smart, the recently board chair appointed by NHS Improvement, states:

smart shiteYou’d think a trouble shooting NHS Improvement appointed (interim) chair has sufficient understanding of the legal ramifications of proposed actions, or easy access to advice from NHS Improvement, to make authoritative decisions… But no. The flakiness of not only Sloven but the broader bodies around them once again laid bare. And yet more delay.

An hour ago I tweeted:

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It’s nearly 1am.

Sloven leading, as always, with actions that make fuck all difference to patient care…. They can’t sign off an epilepsy bathing protocol until nearly three years after LB died but they can change a typo on a news release after a tweet, late on a Saturday night.

Where is the human?

‘Painted a different colour’ and the picnic spot

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Another day, another shower of Sloven related shite. The (one hour) Sloven extraordinary governor’s meeting next Tuesday has been ‘transformed’ [painted a different colour] into a set of observations by pretty much everyone other than the caretaker and cleaners who I suspect would have more sensible and insightful reflections than the newly appointed interim board chair, improvement director, nursing director, CEO and two other random peeps listed on the agenda. The emergency motion that generated the meeting has been pushed to a secret session after public questions. Within the one hour meeting.

Yep. Really.

[Essential context here from George Julian, Mark Aspinall and Peter Bell].

Beyond unacceptable. And so disappointing from Tim and the Turnaround Team. Big sis, Agent T, texted this morning in frustration to say ‘I don’t know why they surprise us every time. I think there must be a hint of not being pushed (or seen to be pushed) by some pesky families…’ This echoes Tom saying

The ridiculous thing about all of this is that when I look at what families demand from Southern Health and the way that they just don’t change I sometimes worry that maybe we are asking a lot or being unreasonable. But then I list the demands of the families and they shouldn’t even be demands, they are such basic requests that if asked on behalf of any other group in society would’ve been dealt with straight away with no barriers. So why does it take so long when it’s for those with learning difficulties?

Agent T and Tom are both right. We ain’t being unreasonable or pesky. We’re calling a failing trust out. Repeatedly. With enough evidence to sink a Sloven flotilla. Sloven, meanwhile, have shown no signs of recognising/acknowledging failings. Tom captures this brilliantly in his post.

Hey ho.

We’ll be heading to the Lyndhurst Community Centre on Tuesday for the unfolding of the fake governors meeting. Meeting My Life My Choice champs at Oxford station, picking up Agent T and Ally Rogers en route and hooking up with George Julian and others somewhere in the New Forest.

  • None of us should have to do this.
  • Thoughtful action by enlightened governors shouldn’t be closed down as it has been

I just hope there’s a good spot for a picnic after and a bit of sunshine. Sounds like we’ll be booted out sharpish.

In related news, My Life My Choice received a second mysterious letter recently. Written to then board chair, Simon Waugh, in May 2014. Copied into Monitor and NHS England. Wonder if they will be there on Tuesday?  I’m sure we’ll have enough egg sarnies and a flask of tea or two to share…

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Dark places and being peggable

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The leaking of the Sloven governor’s emergency motion was a bright spot. Whatever bickering and political wrangling it has generated, Mark Aspinall called it as it was, and is. Simple as. It’s now up to the remaining council members to demonstrate their integrity and act accordingly. With appropriate scrutiny from the regulatory and public gaze.

This latest twist has generated a lot of ‘thank fuck for that’ type comments from family, friends, colleagues and supporters. People have been coming up to us in the street, on the bus, in lifts, saying they can’t understand how the Sloven board are untouched (well other than Mike Petter’s (possibly stage managed) exit). Nope. Neither can we.

We get emails from people about how the campaign has given them the energy, confidence, fight to try to get some accountability and justice for the death of their child, sister, brother, partner, parent, friend. This is sort of good. Only ‘sort of’ because the system shouldn’t be so consistently shite. We shouldn’t have to draw confidence from other people’s experiences. The right thing should be done. With the lightest of family involvement. But we all know this is bollocks when it comes to preventable deaths in the public sector. Particularly those involving certain people.

There has also been a lot of ‘inspirational mum’ stuff…

One of the things that came through clearly from the STATT records was that LB fully expected me to come and bring him home. [Howl]. Of course he did. I was his mum. I fought his corner with every bone in my body from the moment he was pegged as peggable. From the moment he started at an ‘integrated’ nursery in which the induction session involved only certain parents and pointing out separate pegs for the special needs kids who ‘get transport’…

Endless battles. Transport, after school club, respite, getting a diagnosis of epilepsy, transition, direct payments, disabled parking bays….

And then, stupidly, thinking he was temporarily in a safe space, if nothing else…

When I got the STATT records, back in the day, I cried in a new way. A different way to when LB died. Which was also indescribable crying.

Over two years later, we sat through the inquest evidence. Further unfolding of the (inevitable) preventable death of LB. With a topping of toxic mum blame. And still no accountability.

The simplicity and truth and certainty LB felt, recorded in the records. Even in that space. A space in which he was brutalised and had pretty much everything he recognised stripped from him. A space in which he was told to attend stupid fucking tea and cake groups because he’d be allowed home earlier. A space in which he was given bonjela to put on his tongue by a careless and arrogant psychiatrist who denied he was having seizure activity.

A space in which a combination of Sloven incompetence, arrogance and obsessive focus on corporate identity and reputation (rather than basic patient care) together with disinterest from local commissioners, a wider inertia and disregard within health and social care, led to a vacuum in which he (like so many others) died.

A space now documented and evidenced at length. With no accountability. I’m not ‘inspirational’. I’m just doing what I always did for him, until I took my eye off the ball and handed the baton over to a (known to be failing) organisation. And I will continue to do it until there is justice. And accountability. Along with the other #JusticeforLB campaigners.