The solicitor, the student nurse and scholar activism

On Tuesday Katherine Runswick-Cole gave her inaugural  lecture which touched upon numerous highlights of her work over the past 10 years or so. Well worth a catch up if you missed it. One of the things she talked about was #JusticeforLB and the responsibility of academics to be scholar activists.

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The disability studies assemblage certainly did, as she highlighted:

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I particularly loved this comment.

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I remain chilled by the obscene focus of Sloven and Oxfordshire County Council on reputation immediately after LB’s death. And the eight months or so it took before his death made it into national news. That ‘random’ people now know what happened can only be a good thing.

Yesterday, a second year learning disability nursing student left a message on the #JusticeforLB facebook page. He wanted us to know how much of an impact LB’s story was having on his, and other students’, education.

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He went on to say:

Nothing could ever make what happened ok. It will always be a tragedy. But LB is shaping the education nurses receive. He is changing the way people work who have been nurses for years, and most important of all, LB is making the lives of other people safer but ensuring they get the care and support they need.

[Sob]. Spot on. Nothing can make it ok. And I so agree about the impact and change. I’m not surprised in some ways. I mean, remarkable campaign magic has included walking a cardboard bus 100 miles along the Camino de Santiago in memory of LB, Danny Tozer, Thomas Rawnsley and others. In the past few years, we’ve collectively managed to prise open a [new?] space for the scrutiny of, and engagement with, preventable deaths (and, hopefully, non lives) of learning disabled people. l1025096Sadly, this focus is not replicated among relevant health and social care bods. We need no more evidence to know that it’s time to properly address and act on the barbaric and inhumane treatment of certain people in the UK. The CQC swerved from this opportunity with their recent deaths review. There seems little effective action from other parts of the NHS (or social care). Just the inevitable, systemic compromise as always. With nothing inevitable about it.

Anyway, here’s to Prof Runswick-Cole, scholar activism and a new generation of brilliantly enlightened nurses. We salute you.

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Raising a large glass of something…

Received a lovely Crimbo email yesterday which made me – blinking back those pesky tears – think, yep. We’ve rocked this gig. All of us. Here’s an extract from the email and some ‘highlights’ of the year:

I hope you all get a chance to reflect on your achievements this year:

  • real justice for Connor – forcing the NHS to acknowledge their failings and removing the CEO who set the culture that created so many problems for your family;
  • the prospect of real, meaningful change for so many other people within the NHS, in particular the families who’ll now expect so much more from the health service;
  • a new (albeit extremely belated) conversation about the lives of people with learning disabilities, with at least a path being set for how they can get closer to being treated with equality and respect.

There are undoubtedly many battles you’ll still want to fight, and plenty of people who need you to fight for them.  But I hope that over a large glass of something, you appreciate that you really, really are achieving Justice for Laughing Boy.

Jan: Campaigners and the gingers attend the Sloven Board meeting.
Feb: Jeremy Hunt meeting with Rich, Deb Coles and Andrew Smith, MP.
Mar: 12 Angry Women, Brighton, featuring ‘A Mother’s Song’ by Edana Minghella.
Apr: Mike Petter, Sloven board chair resigns; Simon Hattenstone wrote about LB in the Guardian mag; the CQC issue another warning notice to Sloven; revelations of Sloven financial irregularities.
May: Rebel governors meeting
Jun: Performance of A Child of Our Time, Warwick University; debate about Sloven governance in the House of Commons led by Suella Fernandes.
Jul: Talentworks  ‘Going Viral’ and exec salaries scandals hit the news.
Aug: Katrina Percy steps down from CEO into a made up post on the same salary.
Sept: BBC air Broken Trust, about Sloven failings; Tim Smart, interim Board Chair, resigns; Chris Martin removes the Talentworks website and pulls out of the Sloven contract.
Oct: Katrina Percy  resigns with a £250k pay off. The made up post remains unfilled; #JusticeforLB, Deb Coles and Charlotte HaworthHird win a Liberty Human Rights award.
Oct-Nov: #CaminoLB wondrousness.
Dec: Publication of the CQC Deaths Review; #JusticeforLB exhibition and day of celebration, Aviles, Spain; the GMC refer LB’s consultant to tribunal; the Health and Safety Executive appoint counsel to get specialist legal advice on complex points of evidence.

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Here’s to LB and all the other dudes who were (and continue to be) let down so badly.

#CaminoLB reflections

l1023817-2The #CaminoLB. Following the back end of a yellow shell for 8 days across the Northern route of the Camino de Santiago. Carrying the cardboard #JusticeforLB bus (made by the Boumelha family) to Aviles for an exhibition to be held on December 2. 160 kms of beautiful and constantly changing scenery (beaches, forests, mountains, towns, hamlets, woods, lakes, estuaries) and pathways (cliff paths, foot paths, dirt and gravel tracks, tiled sections, alongside dual carriageways, roads and railways). A backdrop of fresh air (with delicious whiffs of eucalyptus, rotting hay, mint, fig, lemon, orange and hazelnut trees). Constant and unexpected sunshine sometimes blocked by sea mist.

And hills… (mountains?)

Still trying to remember what joker told me the Northern Camino was pretty flat. Or maybe I dreamed it among the low level anxiety before we set off.

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Learning disabled people can’t walk (far?) was a message communicated to us in a meeting a few weeks before we set off. We’d crowdsourced £2k [thank you] to fund a group from My Life my Choice to join us for part of the journey. Sadly the language of social care diffused into everyday talk to threaten what was, essentially, a walking holiday. ‘Public liability insurance’, ‘support vehicles’ and the like, as ever working to bleakly colour and constrain the lives of so many people in the UK.

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As it was, we walked (miles), talked, ate delicious nosh, drank beer and cider, slept in dorms and laughed. The biggest [unanticipated] risks were snoring, farting, bangle wearing, decisions around the use of ‘she wees’ (we didn’t) and cheeks that ached more than legs because of hilarious contributions from John and Dave and, later, Dawn and Shaun.

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Fifteen people and two Great Danes pitched up at different points along the walk, facilitated by the extraordinary efforts of Mariana Ortiz, Alicia Woods and Henry Iles. We met all sorts of people en route intrigued by the bus. More officially we met members of a Spanish charity, Integra, and were welcomed at town hall receptions in Gijon and Aviles. A scruffy, cheerful bunch, carrying the battered but still brilliant cardboard bus, greeted by immaculately turned out dignitaries, film crews and photographers. Visible shock and horror expressed at the deaths of LB, Danny (Rosie Tozer’s son), Thomas, Nico and others.

“This is unimaginable…”

Reflection and clarity completely missing from public office/sector in the UK where LB, Danny and others were simply budgets and burdens.

There was other spontaneous support:

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And snatched moments of contemplation along the way. The enormity of why we were walking the Camino constantly with us. It was fitting that the walk coincided with the Dia de Todos Los Santos (Day of the Dead) on November 1. We marked this with (non risk assessed) late night candle lighting and tears on the beach.

l1024319-2With an irony meter the size of the hills we were regularly scaling, I ‘learned’ a shedload during this adventure. The biggy [howl] was the realisation (or  more accurately, recognition) of how I let LB down. No – no – response to this please (and don’t even go there Sloven, NHS Improvement, Jezza, NHS England, CQC, Health and Safety Executive and the like…) He was waiting for me to bring him home and I didn’t.

I also realised, or maybe recognised more clearly, that you just have to crack on and do stuff. Ditch the doubt, walk away from the blight that is big charity (non) work/public sector shite in the area of learning disability and just do stuff. Mencrap, NAS, Scope and other money spinning waste of space bastards totally miss the point. The conversations, chat, discovery, self reflection, delight and joy we shared/experienced across the journey – among those walking, people we met, and virtual campaigners – underlined this. Those who should do, simply ain’t going to. In the UK, anyway.

Spending time with Dawn, Shaun and Paul generated insights into life as a learning disabled adult. Dawn’s stories of living in a Mencrap home in the past were harrowing and her comment after an uncharacteristic stern moment – ‘Oh, I’d make a good carer’- was chilling.

I was surprised at how far we were able to walk. And the absence of complaint. There were some struggles, a few blisters and chafing (a story for another day). Endless uphill walks or clambering down rocky, chestnut and wet leaf strewn paths. I worried about the pain the walk would inevitably involve – I ain’t no walker – but it didn’t materialise. I wouldn’t advocate not training for a substantial walking trip but clearly backbone, guts and resilience go a long way.

It was astonishing how much we all gained from the experience. I don’t know whether this was the walking, the scenery, pilgrim life, the company or the underlying campaign… but there was an exhilaration, emotion and depth of something remarkable and immensely powerful. As Alicia posted on Facebook:

“It’s hard to know what to do after the incredible #CaminoLB. Such a powerful, hilarious and moving week that will stay with me forever.”

Whatever it was. It worked.

#JusticeforLB. Walking the walk.

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Flight of the Camino

Not long to go now before we set off on the CaminoLB. The route is here (it’s a bit anarchic organic and loosely formed). What we know so far: George Julian, John Williams, Dave Griffiths and I (me?) are setting off on Tuesday evening on the 24 hour ferry from Portsmouth to Santander. With the #JusticeforLB quilt and bus. Postcards of Awesome, the #JusticeforLB flag and anything else we can tuck in our pockets and socks.

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We hand the booty (other than the bus and the flag if I can find it) over to Alicia Wood in Santander in advance of the #JusticeforLB exhibition planned for 2 Dec. We start walking with the bus first thing Oct 27 with a cheeky 37 miles to cover in the first two days. Luckily John and Dave are doing those two days. Two comedians who are planning to train by doing a few laps of the deck on the ferry. John has Body Glide anti-chafe cream and Compeed. Dave will be wearing his crown.

Various people will join us along the route. With a build up across the final three days when five people from My Life My Choice (including Dawn Wiltshire, Paul Scarrott and Shaun Picken), Rosie Tozer, who is walking in memory of her son, Danny, and Ruth Glynn Owen join us. Paul points out that it may be the first time learning disabled people have done anything like it. I think it probably is. Demonstrating the limitations of the big charity guns – Mencap, Scope, National Autistic Society – who typically manage, orchestrate and erase the talk, enjoyment and involvement of people in a relentless drive for self promotion and self serving nothingness.

We’ll be meeting with Spanish school kids who are making gingerbread figures and local dignitaries during those last three days. Finishing the walk on Nov 3 in Aviles. Dropping the bus off where the exhibition will be held in December.

This afternoon my sis, Agent T (pitching up at Poo next Saturday to walk the remaining walk) and I caught up with packing plans. The weather forecast is spectacular. Coats/waterproofs ditched. Ipads/laptops still up for grabs (well, for me anyway). Various devices for having an unobtrusive piss en route to be tested. I’m running with some £4.99 jobby from Go Outdoors…

With the help of behind the scenes organisation magically sorted by Alicia, Mariana Ortiz and Henry Iles [thank you] we may well have the experience of a lifetime. Laughter, tears and, hopefully, more laughter.

Here’s hoping a few laps of the Brittany Ferry deck on Wednesday will reap rewards.

LB would bloody love it.

[And there’s always time for anyone (er, cough cough, Mencap, Scope, NAS… or whoever) to join us. Why not smash the boundaries and just do summat?]

Candour, what candour and the Camino training

Back in March 2016, the Sloven CEO included this section in her report to the board.

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Today this family received the response to the complaint they made about their treatment by Sloven, and Chris Gordon. There was no ‘contact with the family throughout this very difficult period‘. Instead, Sloven, true to form, continue to make something so agonisingly painful, nightmarish and brutal, even worse.

Just a few lowlights from the report:

  • The complaint was investigated by Capsticks who regularly work with Sloven and other NHS trusts.
  • Complaints about inappropriate comments made by Chris Gordon were dismissed because he said he didn’t make them.
  • The investigators couldn’t read board meeting notes relating to the death of this person because discussions were during the ‘private’ part of the meeting.
  • The delay of two months between Tim Smart receiving this report and the family receiving it today was because it was with Chris Gordon for reviewing. [Even though the complaint was in part about him and despite his current secondment to NHS Improvement.]

Candour and transparency clearly ain’t reached the southern regions yet. And another family left complaining about complaint handling and facing the dire Ombudsman route.

It shouldn’t be like this.

In more cheerful news, the #JusticeforLB cardboard bus has been expertly revamped by LB’s grandad and the My Life My Choice trustees began training for the #CaminoLB today.

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This film of their first walk is blooming brilliant. Keeping it real, funny, passionate and determined.

In search of rights and colour…

We must be getting closer. Surely.

A bit of a #CaminoLB update

Planning for the #CaminoLB is crackling along. We will be walking for eight days, with the long walks (around 20 miles a day) in the first five days, dropping to 10 miles maximum for the last three. [25 Oct-3 Nov].

The Life My Choice crew have been busy organising or renewing passports today. It looks like there will be 3 (possibly 4) members with two supporters tipping up for the last three days. Excitement is bubbling apparently. My sis, Tracey, is coming for the second week. Rosie Tozer is joining us for the last three days, walking in memory of her son Danny. John Williams will be doing the chunk in the middle. And a few other people are thinking about pitching up at different points. [None of us are big walkers… well yet.]

This whole, random, walking the #JusticeforLB bus across the Camino de Santiago to an exhibition centre in Aviles, has been oiled by the enthusiasm and simply can do attitude of the Learning Disability England team (with Spanish support). They not only organised the Justice exhibition, on December 2 in Aviles, which kicked off the whole thing but have stepped up to offer lifts, blister mopping, scouting the route for possible hazards, and the lovely Mariana (and her dog and possibly daughter) to ease our non Spanish speaking way. The bus, for those of you worried about us getting it from Santander to Aviles in one piece, has been carefully and lovingly strengthened by LB’s grandad and now has a nifty tarpaulin bag for those rainy days.

We will be a right old ragbag collective walking along the trail, in search of rights and colour. Remembering LB, Danny and the others. Carrying a cardboard bus. And hopefully having a bloody good laugh.

Pics from #CaminoLB training.

Down but not out…

Levels of incredulity at the continuing unfoldings down Sloven way – apparently supported and endorsed by NHS Improvement – have reached crisis point. Even our brilliant, informal, campaign media archivist, is flailing…

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Behind this battering is a peculiar situation which seems to be baffling pretty much everyone apart from the Sloven exec (plus Katrina Percy), NHS Improvement and Jeremy Hunt. Even Simon Stevens, CEO of NHS England, has publicly said Sloven have let down patients and families…

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There is sensible and widespread condemnation of the recent sidestepping of the CEO into a new (or old depending on who and when you ask), part time role at the same salary and perks as a CEO (on top of the other, well documented failings). Including this statement from Philippa Russell on behalf of the National Valuing Families Forum.

The story of Smart’s stint as Interim Board Chair which only started in May is that he apparently commissioned two (yes two) so far mysterious reviews which found that the Sloven board are fit to practice. This was announced on June 30 without any engagement with families (other than an ‘accidental’ meeting with My Life My Choice who have since decided to no longer engage with Smart). The annual board meeting held last week demonstrated woeful engagement with families and patients (forced, as always, to sit through interminable presentations/talk with public question time compressed to barely any time at the end). This seems to last as long as Smart’s patience (if you can bear to listen to the audio recording). Appalling senior action still from a trust who have been in the public spotlight relentlessly for failing to engage with patients and families.

Strangely, Smart has agreed to the secondment of two directors (including the Chief Operating Officer).  Chris Gordon to NHS Improvement and Sandra Grant to another trust or commissioning group. And unilaterally (it appears with NHS Improvement dove from above agreement) agreed Percy’s new or old position.

Just a few questions. [No answers expected…]

  • Why would you insist a board is fine and then allow the secondment of (key) execs when the terrain is rocky?
  • Is there now no Chief Operating Officer or Communications Director alongside an interim Board Chair and CEO?
  • Is anyone at the highest levels of the NHS, in this foul and grotesque tale of abuse, deceit and pantomime, going to find it in themselves to stand up and act with integrity?

I suppose, if nothing else, a necessary light is being shone with a bloody big torch not on only Sloven murkiness but also the gaps, limitations, failings, impotence, pointlessness, corruptness and fatcattery that exist within and among senior NHS spaces. I dunno how you sleep at night.

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Walking back from the original gingerbread protest at Jubilee House earlier this summer.

Puff the Mackey Dragon…

It sounds like there’s a dose of musical chairs going on with the Sloven executive. Sigh. Word in the shed is that Sandra Grant, who does summat and goes back to the olden days with Katrina Percy, is off for a six month secondment while Chris Gordon, Chief Operating Officer  (COO) and Director of Patient Safety, is apparently heading to NHS Improvement for 12 months as an improvement director. [I know…]

He, Lesley Stevens and Katrina Percy, are holders of the obscene salary and pension pots exposed a few weeks ago.

In the NHS (unlike much of the commercial sector) it appears when you fail at exec level you simply get moved around in a never ending chess like game. Only one in which the board is so worn the squares are no longer visible and the grubby pieces have been handled so often they’re unrecognisable. And there are no ‘rules’. Just fakery and nonsense played by overly paid, under qualified (in real terms) bods who share a common language, code and cloak of protective armour invisible to the rest of us (who pay their over inflated salaries).

I can remember Tim Smart, the newly, NHS Improvement, appointed interim Sloven chair (the Flash of yesteryear) at the My Life My Choice meeting. Tapping his nose and saying with much gravitas:

Just remember Sharon Shoesmith…

Effectively stopping any discussion about anything.

So, two or three months on from the “action” taken by NHS Improvement in response to repeated evidence of Sloven board failings, where are we exactly? And what did “Remember Sharon Shoesmith…” mean?

Well. Crap all to the Shoesmith question. That was probably part of Smart’s briefing from NHS Improvement… “Just mention Shoesmith when anyone asks a dodgy Q“.

The board got the all clear from (the previously failing) Smart on the basis of fuck knows what. The consistently underwhelming (at best) CEO was removed of operational duties and told to focus on strategy. The COO has gone to NHS Improvement and will only work 2 days a month on Sloven operations. And Grant who, after a quick google, is Director of People and Communications, is off for six months. Blimey. Who is keeping this leaky boat afloat in the land of Solent Lee?

Meanwhile, in addition to the salary/pension scandal, financial irregularities are blasted across the news. Failing, upon failing.

NHS Improvement… I can’t help thinking the question Shaun Picken from My Life My Choice put to Katrina Percy at the January board meeting is relevant here:

Katrina, why didn’t you ask for help? You clearly need it.

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In search of rights and colour…

Came across some serious craftivism this evening. Mind and the Drunken Knitwits (among others) set too on the Radcliffe Camera. A welcome distraction from the continuing non action by those who should.

Left me thinking about plans for a bit of a #JusticeforLB shindig later this year (not quite confirmed) called In Search of Rights and Colour. Involving people, human rights, commitment, explosions of colour, love, brilliance, enthusiasm, stitching, passion, double decker buses and a pilgrim path.

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Drops of brilliance.

The JT Show

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).