Category Archives: My Life My Choice

The JT Show

Posted on by
1

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…)

drummond

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?

jt

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*.

ferg

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…

Posted on by
3

L1019928

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… 

ClAenctXIAA9xnY (1)-2

 

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

L1019947-2

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.

L1020006-3 L1020009-2

L1020001-2 L1019974

Cameron’s wave and Smart evidence

Posted on by
3

L1019607

We’re having the bath replaced with a shower downstairs. In the garage that was converted into a bedroom/en suite jobby over 10 years ago with LB in mind. The bath that had the bath bell. [Howl]. I’ve not had a bath in nearly three years now so it made sense. It’s a small space needing a tiny sink. Not easy to find. Eurgh.

I ended up back online at the Bathstore earlier and a box popped up asking if I wanted help from someone. Yep. Thank you. Cameron appeared in the top right hand corner of the screen. Wearing a set of headphones and a type box under his pic. We started messaging about tiny sinks. So blinking exciting.

I shouted to Rich:

Hey I’m actually having a chat with a guy from the Bathstore…!

It’s not real.

Yep, he’s here with headphones on.

Yeah, but he’s not a real person.

He bloody is. Come and see…

[When Rich came in, the real Cameron was briefly replaced with a photo of possibly Cameron, while he searched for tiny sinks…]

It’s not real.

There he is look, he’s been looking for stuff.

He’s not live.

He is. Look! He looks down when he types….

He’s not really there FFS!!!

 

bathstoreCameron waved. We laughed. He didn’t have any small sinks.

We’ve been a bit anxious since the meeting on Tuesday with Tim Smart, interim Sloven chair.  Rich’s blanket dismissal of Cameron reminded me of Smart’s dismissal of the Mazars review as ‘wrong’. Someone (NHS Improvement, NHS England? Jezza Hunt?…) seriously needs to make sure Smart is given the opportunity to ‘see the Mazars wave’. And for him to be prepared to accept, or at least engage with, the evidence shown.

Sigh.

Postscript: Perhaps unconnected, Rich returned to twitter this afternoon and sent his second tweet in five years. Quality rather than quantity he says.

Of course you can cry…

Posted on by
9

Tim Smart, interim Sloven board chair, met with My Life My Choice (MLMC) champs yesterday. The meeting is described in detail by Kate here [recommend reading this because I muse in a piecemeal way below]. Peculiarly, it was difficult to know what to make of it all.

kate

Smart began by giving a heartfelt apology to our family and said there was no doubt we had been failed completely by Sloven. After nearly three years [howl] of non, fake or mealy mouthed apologies prised out of the Sloven directorate this was the real deal. Deeply moving and very much appreciated. He made it very clear how important it was to him to make sure there were improvements at Sloven. He’d been deeply upset when he saw the tv coverage of the extraordinary board meeting in January and couldn’t imagine if it had been his son who had died.

Sloven have, till now, repeatedly failed to say sorry. They have said sorry for our loss, for the upset we feel. They have let us know they will take the opportunity to apologise to us at a particular meeting (can you imagine?) They have bypassed us altogether and bunged the ‘apology’ on their website. Smart nailed it with openness, honesty and compassion.

Shaun and Jackie then asked a series of questions.

Slade House was a bit of a slippery topic. An assurance that the future of the site would be discussed in public with an acknowledgement that he probably/possibly wouldn’t be chair then. Allowing similar wriggle room to previous chair Petter;  if we sell it the money stays in Oxon but if someone else flogs it type stuff.

The final question (“It’s a nasty one I’m afraid Tim”) was about why the CEO is still in post. Smart’s response was around gathering an evidence base to make a judgement around the potential removal of any board members. Fair enough. He then said none of the reports about Sloven laid the blame at Katrina Percy’s door. Bit odd. The Mazars review explicitly identifies board level failings. And failings schmailings are ultimately the responsibility of the chief exec. Mmm…

Shaun asked if Smart could continue to attend these meetings even if he was no longer board chair as he didn’t ‘BS’ them. Smart was visibly moved by this question. He said it was one of the nicest things things that had ever been said to him and he was at the risk of becoming emotional.

“You can be emotional Tim” said Shaun, cheerfully. “Of course you can cry. I’m always crying… ”

Another one of those moments when I’m just in awe of the brilliance of the My Life My Choice team. Keeping it real. Human. With an extraordinary ability to ask tough questions, offer challenge and remain encouraging and supportive.

Then, into this emotional space, and I can’t  remember how it came up, Smart said very brusquely he hadn’t read the Mazars review and wouldn’t “because it was wrong”.

Blimey. One of those cartoon screechy brakes moments. A quick photo and Smart and I left for a brief chat. Outside, he said he had read the Mazars review but was dismissive of talk of thousands of deaths in the media [and clearly still dismissive of the review itself]. He told me a story which I didn’t get then went off to get a cab.

So. Where are we at? What does any of this mean? I’ve no idea really.

Vague, half formed, thoughts:

  • Tim Smart is genuinely sorry and shocked about what happened to LB and the treatment we have experienced.
  • He recognises (some) obvious and sustained failings in Sloven provision.
  • He prides himself on his integrity, honesty and straightforwardness while remaining closed to actually listening or engaging with some of the evidence.

L1019582-4

I went back to work feeling upset and pretty low.

Oh Mencrap… really?

Posted on by
17

Hearing rumours that Mencrap have lined up a ‘Five years since the Winterbourne View Panorama film was screened’ media thing. Tomorrow.

Sigh.

Really?

What do they actually do…? (Serious question.)

Brilliant journalism uncovered scandalous, horrific, abusive practices in a (privately run) assessment and treatment unit in Bristol back in 2011. This generated a moment that led to a mass signing up of pretty much everyone/organisation connected to learning disability in the UK. To what turned out to be a combo of earnestness, pomp, ridiculous bureaucracy, ultimate pointlessness and ill thought out promises. At enormous cost.

The Winterbourne View Joint Improvement Programme (WVJIP). [Shudder].

A programme that gradually petered out into a Bubb’s breakfast. The 50 odd signees remaining largely silent on their  collective failures.

We’re left with a  handful of dedicated and deeply committed staff at NHS England sticking their fingers in various life dykes with the support of pockets of dedicated and deeply committed groups/individuals across the country.

Pretty much the same number of people continue to (not) live impoverished (and brutalised) lives in assessment and treatment units across the country as there were in 2011. Many, many more are leading impoverished (and brutalised) lives in independent supported ‘homes’. Some of which are run by Mencap.

Winterbourne View has remained the cultural touchstone for repeated and deeply serious failings in learning disability provision. Why? I suspect partly because it suits Mencap. A quick win for (vacuous) media coverage. And partly because it was run by a private (not NHS) provider.

What was exposed at Winterbourne View was barbaric. The publication of the Mazars review in December 2015 flagged up so, so much worse. The systematic ignoring (or worse) of the preventable deaths of learning disabled people by an NHS trust. Less than 1% of unexpected deaths were investigated.

Less than 1% of unexpected deaths were investigated…

The response of Mencap to the Mazars publication?  Puffery about Mencap greatness. Shockingly and deeply inappropriate.

*Mencap’s repeated and self serving focus on ‘Winterbourne View’ further demonstrates the gap between Mencap and the people/families they claim to be the voice of. Learning Disability England is being launched on June 14. Reclaiming ‘voices’. Thank fuck.

 

Rebel engagement

Posted on by
8

 

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.