Six days in Asturias

A last minute booking to try to escape the stain/strain of GMC tribunal horror. Rich had to stay at home to work. I got a return flight to Asturias for £107. Returning to the land of the Camino. A hotel in Oviedo booked for night one. The rest open to whim [or howl]. The forecast rain and cloud.

Thursday evening

At the airport, waiting for the Oviedo bus, I chatted to D. She was on her way to a Tai Chi course with a Spanish master. After 12 years of practice she was beginning to understand the inner workings involving her core. She also mended clocks.

She asked what I did for a job. 

“My mum told me I was diagnosed with High Functioning Aspergers when I was at school”, she said, when I told her. “I never looked it up or anything, I was just relieved to learn I was normal. I didn’t feel it at the time.”

M joined us. A recently retired economics teacher. She was going to spend a week volunteering on an immense course.

“Immense?” I said. “That sounds pretty important.”

“Immersion. Students of English immerse themselves in the language for a week with no Spanish spoken. It helps to cement learning.”

“I realised I talked all the time and didn’t listen,” said D. “On one of our retreats, someone said I wasn’t to talk for 24 hours. It made me realise that the quiet people, who I’d never even noticed before, spoke the most sense. The noisy ones I’d always engaged with said nothing.”

It was dark and raining in Oviedo. After some help from non English speaking locals, I found my hotel and checked into my room with a view. I felt like shite.

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Friday

The guy on reception enthusiastically scribbled on my map before I left to explore the city (of sculptures). With a final flourish of the biro he marked the Santa Maria de Naranco up on a hillside overlooking the city. I was to catch the A2 bus opposite the Campo de San Fransisco, two minutes from the hotel. The bus turned up straight away. I got on and said my destination. The driver didn’t understand me so I showed him the map. He shook his head and pointed to the bus stand behind me, making his fingers into a shape I think meant a letter rather than a rude gesture.

I got off and pointlessly studied the bus timetable written in Spanish for a few minutes.

Someone shouted. I turned round. Another bus driver asking where I wanted to go in Spanish (I think). 

I got the map out and pointed to the scribble. He nodded. The fare was €1.20. The church spectacular. I stayed a second night in the room with the view.

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Saturday

Early afternoon I was wandering around Cudillero, a dense and beautiful fishing town that tapered down the hillside into a harbour, with Alicia Wood and Henry Iles. Reminiscent of Portofino there were bustling restaurants serving seafood delights around the harbour front. Unlike Portofino, there were no designer shops, masses of tourists or fakery. Just a fishmonger, a vending machine or two, people’s smalls hanging on airers from windows in the narrowest alley ways and an enormous, damp smelling, dusty pink and blue flavoured church.

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We sat up into the early hours of the morning, eating traditional stew, drinking and putting the learning disability world to rights.

Sunday

A day trip to the Somiedo Nature Park with Alicia. A small beer in bear country before driving further into the mountains for a two part adventure. 

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Part One. Clear and detailed info from Alicia about what lay ahead. Eight kms of fairly hairy (pin bends) but doable driving. Passenger advice: don’t look right if you don’t like heights [I don’t]. We reached Valle de Lago, walked further into the mountains and had a picnic from the olden days, chatting about childhood books. Looking for bears.

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Part Two. No advice, just a creeping sense of horror as the road grew steeper and narrower. Small sections of wooden barriers with car sized holes appeared every so often. 

“There’s metal inside the wood. You can see where it’s snapped…” I said, leaning away from the window. As we ‘laughed’ hysterically.

Bend after bend, more broken fencing and the occasional oncoming car. We inched our way up the mountain road to a car park on top of the world. A mountain dog, torrential rain and extraordinary views. 

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After a soaking wet walk to a lake along a pink path worthy of a sci-fi film set we drove back down. With cattle for company.

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Monday

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I left Alicia and Henry and took the single track FEVE rail journey from Las Cabos to Gijon. Alone at first, I was joined along the 30 or so stops by a few Asturian locals. The odd set, perm and elaborately coiffed comb over. No chat. Just travel. Taking in idyllic hamlets, small towns, touching on bits of coast and the back end of industrial Aviles; apocalyptic, smoke belching ironworks and a hinterland of dust covered, unrecognisable landscape.

I was weepy for most of the day. An outcome of the extreme fear therapy we’d endured the day before? Or maybe it was because I was, unusually, able to think about Connor rather than GMC/NMC and other shite. I walked to La Madre del Emigrante (mother of the immigrant) sculpture we’d passed on the CaminoLB.

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Followed by dog and people watching.

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I had a room with two views in Gijon; the second window right above (and facing) this guy’s head. A second set of doors opened out onto the neighbouring square.

Tuesday

The sun shone and I felt brighter. The Gijonese were out in force and I did what they do. A march along the sea edge with my bag, a parade along the front, ice cream and book reading on the beach. 

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Ending the day with a cheerful and delicious final meal with Alicia and Henry. 

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This post is, in part, an unashamed plug for this strip of Northern Spain. An 80 minute flight to a land of delicious food, beautiful and varied scenery, warmth, rich hospitality and a wonderful way of life.

It’s also an account of easing into feeling human again.

The heirloom

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Alicia Wood drove from Devon late afternoon yesterday. And pitched up at ours, en route to London, with her longtime friend, Maurizio Anzeri, and the artwork he created from a photo of LB. We’d seen, and loved, photos of this picture, which was recently exhibited in Aviles with the #JusticeforLB quilt and other brilliance, but it’s impossible to capture the delicate, intricate, extraordinary (and precision) golden thread, stitching/embroidery on camera. (Sort of ironically.)

It is completely mesmerising.

I can’t put into words what Maurizio creates with his work. He typically works with ‘anonymous’ vintage photos, creating patterns over faces with embroidery thread. He didn’t do this with LB. He sort of wove the magic with him, through him. For him.

One of the saddest things that haunts me (apart from constantly missing LB) is the gradual loosening/distancing of him from the continued unfolding of our lives. I know it’s kind of inevitable. Christ. We can’t keep banging a ‘remember LB’ drum every other minute, despite how much I want to.  I now understand how much each of us who knew (knew of) and loved LB in our various ways, always will. How could we not? And I’m beginning to develop an encouraging, while patchy, engagement with the ‘he’s always with me, in my heart’ type thinking.

Maurizio has produced something that will always prompt/demand questions, interest and fascination among family and friends. He has created an heirloom. And that is truly magical.

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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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Of rage and light…

Overwhelming (and kind of surprising) support in response to remaining angry. For productive rage. That’s cool. Just got to keep up the brilliance stuff too. Luckily this seems to fall over itself. Truly extraordinary… For another week, the #JusticeforLB quilt is on display in Aviles, Northern Spain. With the #JusticeforLB bus and this exquisite piece of artwork by Maurizio Anzero.

No other words.

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Johnny Rotten and the legitimacy of anger

Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

Do you remember when N and LB were young? And we were so optimistic about the future…

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

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Bindman’s published their first ever annual review today.

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.

Oh dear Mike

Oh dear. Mike Durkins, National Director for Patient Safety at NHS Improvement (my arse), made this statement about the CQC deaths review;

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There is so much so wrong with this statement, not least Durkin’s apparent indifference or obliviousness, to what are, often, preventable deaths. What really makes my jaw ache though is his bizarre reference to families of learning disabled and mental health patients. Mike, all families should be properly treated and supported when a loved on has died unexpectedly. Just like all unexpected deaths should be properly investigated. Singling out these families suggests a complete misunderstanding of this latest scandalous unfolding.

As Patient Safety Director you really need to be focusing on why certain patients are dying (consistently) in the first place. [And, if you need herbs off the street to point this out to you, you should probably have a long, hard think about whether you are in the right job.]

Also, before you make a leap to global standards of excellence, you might want to see what’s going on in Spain and their response to the way in which the NHS treat certain members of society. Strikes me, you could learn a thing or two.

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Humanity, value, love and sunshine…

Today, as part of the International Day of Persons with DisabilitiesLearning Disability England and Spanish friends held an event in Aviles, Northern Spain, celebrating #JusticeforLB and all those who have died through neglect and indifference. Stitching, artwork, music, dancing, fun and so much more.

Just brilliance…

I felt a right old pang seeing the #JusticeforLB bus/quilt in twitter pics. And reading the shock, outrage, sense and warmth expressed by local kids, self advocacy groups and others…

Valued members of society. Blimey. ‘Reach for the stars’ type aspirations that seem to firmly remain the stuff of dreams here. Despite the continued and brilliant efforts of some/many.

Still. We gotta recognise steps made and there have been some. First, the General Medical Council (GMC). Having proceeded at a snails pace (over 2.5 years so far) in the investigation of Dr M, we were told we’d hear the case examiner decision this week. Sitting at my desk earlier [grey sky, gloominess and an all to0 familiar feeling of delay dread] I steeled myself for another weekend without news.

Then an early afternoon email. Dr M is being referred to a tribunal hearing.

A few hours later, a comprehensive (and spontaneous) update from the Health and Safety Executive (HSE) beautifully headed ‘Connor’.

If you’re embroiled in a serious investigation involving a preventable death [howl], your priorities may well be on the meticulous steps involved in evidence collation/examination. Keeping families informed may seem a less relevant, smaller, almost inconsequential part of the process.

It ain’t.

Keeping families informed demonstrates:

that beyond loved children/sisters/brothers/grandchildren/nephews/nieces/friends are valued.

serious consideration and scrutiny of what’s happened, allowing/enabling slightly easier rest in a harrowing (possibly lifelong) space.

a basic, deeply warming, and too often missed, humanity.

Thank you. To the GMC, HSE and ongoing Spanish based magic. For shining light and sunshine on the way forward.

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You can join, contribute to and keep up with Learning Disability England for £12 a year.  

 

 

Conflict negotiation and Trump stickers

I’m in a space of Trump denial. In a 4.5 star hotel booked for €120 for four nights in Santa Cruz for a work gig. An outside lift reminiscent of The Towering Inferno. Loo roll with a dark blue sticker (figure with upraised arms) on the end sheet. This figure appears variously on a cocktail stirring stick (I think) and other stuff in the room.

fullsizerender-3A Trump like figure. Directing me to the start of a loo roll/tug ritual I’ve mastered since I was a tot. There are no cocktails.

On the plane I had an aisle seat. The woman by the window was a conflict negotiator. With no one between us we bonded over her well worn walking boots and my dusty trail shoes. She trumped the #CaminoLB with 15 or so years of walking different trails/adventures.

We totally owned that middle seat as she quietly reassured me about the robustness, independence and power of the Health and Safety Executive. Apparently, being formally interviewed by the HSE is a deeply, serious step. I was reminded of the clear and sensible info given by the police back in the day.

“This isn’t your conflict any longer…” she said.

Just imagine.

#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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