Danny Tozer

Danny’s inquest began this week. Three weeks ago we set off on the  #CaminoLB. His parents Rosie (second left) and Tim (second right) joined us for the first few days. (Rosie’s account of what happened before and after Danny’s death can be read here.) Much talk and reflection about the inquest as we carried the red teapot in Danny’s memory.

We hoped, we seriously (naively) hoped and kind of convinced ourselves that Mencap would do the right thing. Given the transparency generated by George Julian’s live tweeting and Mencap’s self proclaimed status as ‘the voice of learning disability’ we thought they’d pitch up and park the dirty tricks bag that too commonly appears at inquests.

They didn’t.

A few initial thoughts here (in no particular order).

A clusterfuck of fuckwad proportions.

Natural cause of death

Danny died of natural causes. Apparently. According to the Coroner’s office. There would be no post-mortem, inquest, scrutiny.

People assume unexpected deaths always involve inquests. Not always. Learning disability is a kind of ‘get out of jail’ natural cause of death card.

This is Rosie and Tim’s fight to gain accountability and answers about the death of their beyond loved son.

Erasure of house mates

Staff trauma was raised by the Mencap barrister ‘without wanting to detract from the family’s trauma’. The distress of the four other housemates present that morning was erased. One witness talked of going to put ‘bags on wheelchairs’ while the ambulance was called. A grotesque and graphic illustration of the non-personhood of people who should be the focus.

Blaming the parents

Mencap couldn’t help themselves. There has been no acknowledgement of Danny’s death this week. No kindness, empathy or apparent reflection. The Mencap barrister brutally cross-examined Tim and Rosie on the first day. Did they complain? Did they complain enough? Why didn’t they make their concerns more apparent? Why and why not? 

Hints of ‘difficult parents’ dripped into evidence. 

They answered each question carefully and with dignity.  At one point Rosie said she’d brought a scrapbook of Danny’s life that she hoped the coroner and others would look at. The contrast of this simple act of love and humanity with the barrister’s questioning was almost unbearable. 

‘Private time’

Much discussion and questions related to ‘private time’. Mencap contributions by staff witnesses and/or their barrister focused obsessively on Danny’s morning wank. This relentless and dehumanising focus seemed to be aimed at absolving Mencap of responsibility for Danny’s death. He was not to be disturbed or interrupted during ‘private time‘. 

The sensor mat

The sensor mat. The epilepsy bed sensor mat translated into ‘no need for observation’. Niggles about the sensor mat tumbled out almost by accident during confused and often incoherent evidence.

The mat worked.

The alarm went off during ‘private time’. It disturbed the whole house. It was definitely working.  It was tweaked and replaced a few months before Danny died. A reference to mat ‘settings’ hastily retracted. The mat had a coloured light – blue, red or green – depending on who was giving evidence. It definitely worked. It was checked every night. 

Except it didn’t work. Whispers emerged suggesting it was turned off during ‘private time’.

Staff members tried to simulate seizures in Danny’s bed. Grotesque, unfathomable action. Unrecorded. Anecdotal.

The mat worked. It didn’t. Nobody really cared at the time of Danny’s death. It was natural causes. No one from the front line staff to local, middle or senior management gave a flying fuck. Danny died of natural causes.

Epilepsy awareness

There was a strong sense (similar to LB’s inquest) that Danny didn’t have ‘proper’ epilepsy. Just a fake, learning disabled type version. A bizarre and incomprehensible position sustained after both Danny, LB (and others) died. I don’t have words for this. Just tears.

Family barrister, Ben McCormack, consistently and carefully raised epilepsy awareness among staff witnesses. He returned to the point that staff knew they should time Danny’s seizures and call an ambulance after five minutes. The observation levels described fell far short of this. His efforts fell on stony and unmoving ground both among front line and more senior staff. An almost pride in epilepsy unawareness played out in court

The hours

Descriptions of the number of staff, ‘residents’ and the sums underpinning ‘sleeping’, ‘waking ‘hours and 1:1 hours was like looking at my crochet chair of tangled wool, half crocheted squares, knots, mistakes and more. Without the colour.

Reported allocations (one house mate had 24 hours 1:1 cover while the rest seemed to have a range of 1:1 and general hours) seeped and steeped into an amorphous mass of incoherence. A nasty mix of double counting and ‘sharing hours’.

The Tozers took Danny home when they felt there weren’t enough staff on duty. A shortage treated with short thrift by one staff member. Danny’s activities highlighted as problematic. The ‘voice of learning disability’ seriously rocked the impoverished life model of supported non-living this week. 

Staff attitudes

Staff provided a pretty much consistent and desolate picture of disinterest, dismissal and casualness. “I can’t remember” a much repeated response. More senior staff members used an almost more baffling “I believe…” for questions they should have known the answers to.

There was no apparent preparation, no reading reports, checking notes, minutes, care or reflection. It was as if Mencap staff were beaten and stripped of any humanity. A bleak, cold and callous picture of disregard. 

I hope Rosie, Tim and family are ok tonight. Their determination to get justice for Danny has already thrown up a shedload of questions, concerns and horrors that should be grasped and shaken by those who should until we no longer accept the shite that permeates ‘learning disability’ care.

I’m just not sure who ‘those who should’ are any more.

 

Housecoats, aprons and mucky labour

Captivated by the women of Galicia along the last section of #CaminoLB.

“Can I take your photo?” I asked pointing at my camera. A few said no. Others stood tall. Looking me in the eye with quiet confidence. There was no artifice or prevarication.

Incredible, beautiful faces.

Lines. Life carvings. Contours of determination, humour, dignity. Resilience. Well earned, authentic resilience.

Glimpses of triumph and more. So many stories.

Housecoats, aprons and mucky labour.

Back to work tomorrow.  It’s been a long five years.


Smashing it

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We did it. A historic judgement by Mr Justice Stuart-Smith on Monday morning which involved a £2m fine for Sloven Health. LB and TJ Colvin were treated with the respect they deserve. Justice was served. We had been prepared that the sum of money was not as important as the Judge’s comments would carry more weight. As it was Mr Justice smashed both. He carefully read out a judgement so drenched in sense and fairness it was extraordinary to listen to. In a court again packed with JusticeforLB campaigners including several members of My Life My Choice.

The sensitivity and commitment of the Judge, Bernard, the HSE team and the media who attended (many of whom have followed the campaign over the years) were also extraordinary. Kindnesses that will stay with us.

Our statement about the prosecution can be read here.

Michael Buchanan’s news film with beautiful video clips of LB is here.

A few thoughts and outstanding questions

We were surprised (and pleased) to hear Jeremy Corbyn raise LB, TJ and the campaign in Prime Minister’s Questions yesterday. May also praised the efforts of the families. This is good but serious questions remain about the failure of the various regulators/bodies to act on what the Judge described as ‘the dark years‘ of Sloven. Jeremy Hunt is captured in the Commons looking slightly uncomfortable. So he should. It’s not the job of bereaved families to ‘uncover the serious systemic problems‘ in health and social care.

Mr Justice describes ‘very grave concern‘ that endemic failures were allowed to arise at all and to persist for so long. I mean why was this? Do senior people leave sense on a middle rung of the ladder to success? Are critical scrutiny and self reflection dirty words in senior circles? Is the culture so dire that no one can offer challenge to unspeakable actions?

Many of the mountains of email exchanges we have through Freedom of Information requests include abysmal statements and the complete absence of challenge to these statements by numerous people. Norman Lamb stands out as someone who stood firm, recognised how wrong it was and acted. And made sure action happened.

We have in the Justice shed a long standing plan to hold an exhibition plastering this documentation around a cavernous space to allow people to wander around and read the levels of shite and what families are forced to endure. What is said and not said. Replicated in too many other cases.

Looking back across the five years there was a wilful refusal by NHS Improvement, NHS England, the CQC and Jeremy Hunt to act. One example. Two referrals (yes two) of Katrina Percy to the CQC’s Fitness to Practice panel in 2015 and 2016.

1. Mike Richards sent  a ‘fuck off she’s fine’ letter months later (the referral had got lost). 2. After chasing we were told the fitness panel would wait for NHS Improvement’s trouble-shooting Chair Tim Smart’s exec board capability review. Smart bafflingly concluded the board were all fine. Percy again exonerated.

NHS Improvement and the rest continued to slumber.

Point 4 of the judgment states: ‘When the systemic problems were finally recognised, a welcome realism entered the Trust’s appreciation of what happened‘. This interpretation glosses over the crucial point that it was the replacement of ‘pay off Percy’ which enabled the (slow) recognition of failings. She and her turgid, complacent and arrogant board have got off scot free.

Unlike the MPTS panel which decided to include the ‘difficult field of learning disability’ as two mitigating factors in deciding to suspend Valerie Murphy, Mr Justice states ‘the fact that the Trust’s breaches were most likely to affect vulnerable patients is an aggravating factor‘. Of course it is. That he simply saw LB and TJ as human is at the heart of his narrative and judgement. And what has been largely lacking from the broader NHS related responses.

The sentence is here. The biggest Health and Safety related prosecution fine in the history of the NHS.

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There has been some unsurprising meithering on social media about this fine. Yesterday we found out that Sloven quietly sold the Ridgeway Centre in High Wycombe last November. This was one of the spoils they took with them having lost the Oxford contract because they were so shite. A sale that netted them a tawdry sum of £2.3m. Dosh taken from Oxfordshire provision.

It’s a shame the £2m can’t be channelled  into providing groundbreaking provision for LB’s peers some of whom continue to flounder without appropriate support in county.  ‘A TJ and Connor centre of life, love, fun and brilliance’. But that’s out of our hands.

Mr Justice was spot on with his ‘just and proportionate outcome‘.

Finally

We’re pretty much done now. We did what we set out to do and whilst none of it will bring back our beautiful boy we collectively did a bloody good job. As Mark Neary reflected yesterday we may have changed the way campaigns are run.

One of the central features of the campaign has been the extraordinary live tweeting of the various hearings by George Julian. She is now looking into a more sustainable way of doing this for other families. Making dirty practices by public sector funded and instructed counsels visible in real time is priceless. If you can spare £1 a month (or more) please fill in the form on the post and let George know.

I hope a light will be shone on the persistent cover up of the ‘dark years’, the culpability of Percy and the board and that those more widely implicated will absorb some of Mr J’s sense, fairness and integrity and now speak out. Critical scrutiny, transparency and honesty is essential for safe, effective and inclusive health and social care.

I’m off to Spain tomorrow with various #JusticeforLB campaigners to walk the LB bus the last 170 miles to Santiago de Compostela*.

After that it’s back to work. And life.

Thanks, thanks and many more thanks – so many thanks – to everyone who did and kept doing what they could and so much more. We seriously smashed it.

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*UK walks are also taking place. Rumour has it, in another magical twist, Mr Fortune, Winnie Betsva’s barrister from the inquest is doing the Devon walk.

 

 

 

A day in court and some justice sunshine

L1032452-3The sentencing hearing for the Health and Safety Executive (HSE) prosecution took place this week. The #JusticeforLB bus made a surprise appearance at Oxford Crown Court thanks to Alicia Wood who brought it back from Spain where it’s rested since CaminoLB 2016. Rosie, Will, Owen and Tom joined other family members, friends and more for the final day of sentencing yesterday.

Within minutes we heard the judgement would be delayed until 10am next Monday. Disappointing but five days doesn’t register on my delay scale any more given we’ve waited 1825 days to get this far.

A backdrop to the two day hearing was that Sloven had pleaded guilty to the charges before any charges were brought by the HSE. The new CEO Nick Broughton held his hands up to say ‘fair cop’ and accepted systemic failings between 2011-2016.

[Now known as The Percy Years with an ‘HSJ CEO of the Year’ award as a logo.]

Broughton’s statement included open acknowledgement of the way in which we’d had to fight for justice and how wrong this was.

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#JusticeforLB sunshine at last penetrated the black establishment clouds. A position we didn’t anticipate back in the day.

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This welcome development took a bit of a drubbing by the end of the second day but more of that later.

Bernard Thorogood was acting counsel for the HSE. He spent Monday and yesterday morning laying out the case for prosecution.

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On Monday this involved the death of TJ Colvin in 2012 at a Sloven unit in Hampshire. In 2013 the coroner found no systemic failures in TJ’s care and it was case closed. That is, until the pesky #JusticeforLB kids persuaded David Nicholson to commission a review into the unexpected deaths in Sloven’s mental health/learning disability provision between 2011-2015. This was to become the Mazars report. An extraordinary review which enabled further scrutiny of TJ’s death.

The details were harrowing. Failing after failing after failing in TJ’s care. The HSE case underpinned by one of the quiet heroes on the long road to justice; Mike Holder. Mike, a health and safety expert, had in early 2012 carefully and meticulously provided details of the ligature and other safety risks in the Trust. He resigned when the Exec Board batted these concerns away like a sleepy bluebottle caught up in a boring meeting room on a hot summer’s day.

He identified 21 long telephone wires across Sloven in-patient provision. The replacement cost for each was £55.

“£1100…” spluttered Lord Justice Stuart-Smith. Yes. £1100 to reduce the risk of serious harm to patients and prevent TJ’s death.

As Bernard* spoke Broughton sitting on the Sloven bench looked devastated. This was in contrast to LB’s inquest when the Sloven team gleefully treated the process like a game of  Top Trumps.

Roger Colvin chose to read his victim statement to the court. This isn’t always allowed apparently but Lord J said yes and we heard him describe his family’s devastation at her death and the carelessness that surrounded it.

The packed public gallery was silent.

Connor

Connor’s case began on Monday afternoon and carried over to Tuesday. The same detail we know inside out but with a health and safety focus. It was heartbreaking to again hear how appallingly Connor was failed and how easily preventable his death was. The overlap between his and TJ’s deaths were grotesque.

In an unexpected move Bernard T detailed my interactions with the Trust ending with this:

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I can’t describe how – I don’t have the words here… powerful? Moving? – it was to hear this said in court. Bernard effectively produced a balm for the raw guilt I continue to drag around.  I hadn’t realised what having ‘your day in court’ could mean.

The defence and dirty dealings

The Trust accepted pretty much the whole of the HSE case. The defence won’t take long I naively thought. We’d been prepared that this section would be pretty unsavoury and it was. It was basically about dosh and reducing how much the trust would be fined.

“Every pound fined is a pound less available for future patient care…”

Of course.

There’s a one third ‘discount’ (I know) in place because it’s a public sector body. Fair enough. But given the thousands racked up by Sloven on legal fees to destroy families, paying mates £3m for shonky viral training and rewarding Percy with a £200k + pay off, the arguments presented were foul to sit through.

The defence barrister proceeded to do a ‘I’m sorry but…’ type number as he undermined Broughton’s ‘fair cop’ position with some dirty little dealings. These included the argument that the coroner had found no systemic failings at TJ’s inquest.

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We saw in the earlier link to TJ’s inquest coverage that her family were deeply disappointed with the coroner’s lacklustre engagement with what happened. The same coroner presided over numerous inquests relating to Sloven without, ironically, finding any systemic failings. A cracking example of how coroners may be ‘best placed’ but may still do a crap job.

The barrister also seemed to suggest that the observation levels for TJ were adequate and the Judge should differentiate between her case and Connor’s in his decision on fine amount. The HSE case was a careful compilation of layers of failings with pivotal chronological points at which the Trust should have acted and didn’t. Trying to pick away at what happened to TJ was unnecessary and cruel for her family to listen to. The point had earlier been made that criminal prosecutions are a very last step for the HSE.

The barrister moved onto the individual responsibility of staff members again trying to  introduce some wriggle room into the hitherto accepted systemic failings pot. Then in an unexpected move mother blame was back on the table.

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Setting aside the fact Murphy’s performance was found to be woeful rather than ‘wanting’ there was no reflection that Sloven’s failure to refer Murphy was further evidence of how shite they were. Instead he tried to weave a further vexatious mother thread taking the shine off the apparently heartfelt declarations in Broughton’s statement.

That’s where we’re at really. Evidence is now done. No more nasties for us to hear (I hope). Sentencing judgement on Monday.

Finally a few thanks…

We’re in awe of Bernard and the HSE team who were meticulous and thorough in their investigation and case building. They were also kind, humane and sensitive throughout.

Thanks to everyone who pitched up from all over (and those who followed the hearing on twitter). The judge could not have failed to be moved by such a strong collective showing on both days demonstrating that TJ, Connor and all the other people who have died preventable deaths in careless, inhumane settings count.

Finally thanks to the Witness service at Oxford Crown Court. I was a bit bowled over having a bespoke person take good care of us during the hearing.

*Apologies if first name is not appropriate here.

Light and the fatberg ingredients

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Crumbs. I’m feeling brighter. I’d anticipated a plummet to rock bottom land in the lead up to the Health and Safety Executive (HSE) sentencing hearing next Monday and Tuesday. A month after the MPTS sanction decision for Valerie Murphy. Two years after LB’s two week inquest. Five years to the day we took him to the STATT unit that cold, dark Tuesday evening on March 19 2013 [howl].

Other than the odd trip to London or Oxford I’ve been hanging out in the Justice shed for weeks. Crocheting.

A recognisable blanket of brightly coloured granny squares has emerged (will add a picture in the morning when it’s daylight). Griefcast has become my (late to the party) go to soundtrack. The (sometimes) humorous reflections of death and grief by comedians has been a gentle and soothing backdrop to the wool action.

I feel brighter.

Tom and I did a news interview this morning in advance of next weeks hearing. In our kitchen. The setting for numerous recordings over the last five years.

Doors have since fallen off cupboards and and half arsed drawer fronts carefully propped up. In preparation for the visit I did a bit of cleaning this morning.

“Mum! It smells really funny down here!” shouted Tom while I was upstairs getting out of my crochet uniform of grey tracky bottoms and a worn out old woolly red jumper.

“Ah I chucked a load of bleach down the sink. It might be that!” I replied. Visions of some right old ripe and until now undisturbed fatberg ingredients fighting back in the u-bend.

We ended up talking about five years of campaigning. Five years. Five of Tom’s seven teenage years. Pretty much the first five of Rosie, Will and Owen’s adult years. Half a decade. Half a decade of repeatedly poring over the hideous and distressing details surrounding LB’s death. Over and over and over again.

Of being blamed and vilified. Of persistent fat berg ingredients.

The interview was unexpectedly positive. There are no more nasties to come. No more bundle pages to turn over and ‘go to’.  No more oaths to swear. No more vicious counsels to face. We’re part of the audience for the hearing next week. And Sloven have pleaded guilty.

Tom made a comment at the end of the interview about the style of the campaign; the humour, creativity and fun. He was spot on.We’ve collectively written, blogged, spoken, tweeted, live-tweeted, presented, met, challenged, shouted, scrutinised, counted, drawn, produced, filmed, sung, shared, kayaked, run, walked, danced, travelled, stitched, photographed, baked, drunk, laughed, cried, wept, hugged, raged and laughed more.

Whatever happens next week we’ve done LB and all the other dudes proud.

Light.

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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.

bindmans

Bindman’s published their first ever annual review today.