The full panoply

Posted on May 14, 2019 by sarasiobhan

A rare post. I’m on leave for a week. At home. Writing what I’m calling ‘book 2’ about families with disabled children (a contracted gig). This has involved sifting back through time, space, context, hisory, stuff. I kind of got stuck revisiting the documentary The Silent Minority made by Nigel Evans in 1981. About St Lawrence’s Hospital, Caterham and Borocourt Hospital near Reading. Long stay institutions for learning disabled children and adults.

We moved near to Borocourt Hospital in 1982.

Sun drenched summers, fun and laughter. Lager and black booze filled evenings and country pub lock-ins. A different terrain to our Southend childhood. Borocourt standing to attention faintly in the background. Carelessly, thoughtlessly ignored. A magnificently austere red brick gothic building. A place that almost bothered me. Borocourt people muttered.

Nigel Evans is someone I wish I’d met. The humanity and humour he captures in this documentary alongside footage that almost demands a trigger warning before viewing is extraordinary. ‘Inmates’ offer warm, heartbreaking and thoughtful commentary:

Perhaps (I dunno, I found it all beyond moving, harrowing and devastating) the breathtaking stomach punch was when staff noticed that Terry Green was trying to move the wheels of the chair he was sitting in but couldn’t quite reach them. They sorted a different sized chair (temporarily) for him.

Evans describes how

After 40 years in bed, 10 years on a bean bag, Terry Green takes his first inching steps towards independence. For decades the full panoply of the medical profession has tripped through this ward and nobody had the wit, the initiative or imagination to give Terry this opportunity. This kind of neglect invites a whole new definition of the phrase ‘mental handicap’.

No wit, initiative or imagination… The full panoply of the medical profession.

I had to google ‘panoply’. It means ‘an impressive collection’. My respect for Evans speaking these words grew exponentially. And, with a bit more digging, I found out he did some fudging in terms of gaining consent for the film (according to the enraged health boards of Surrey and Reading). It was in the public interest he said unapologetically.

It was. And it is. We have a public and unassailable record of the treatment of learning disabled people in the 1980s.

Today further details of the latest (now already dated while still not published) Leder annual review were leaked by the Health Service Journal (@rebeccasmt). The Times did a piece on Sunday (@RosamundUrwin) highlighting the lowlights. The HSJ offered the 12 recommendations with commentary.

The report documents the usual shite. 38% of deaths haven’t been allocated a reviewer, consistently dire premature mortality rates and more. The recommendations are truly grim. And include a call for guidance that ‘learning disabilities’ should never be an acceptable rationale for ‘do not resuscitate’ or used as the underlying or only cause of death on a death certificate. Forty years after Nigel Evans called out the medical profession for its inability to be human.

With unexpectedly fab weather and ‘holiday’ time on my hands I’ve reclaimed a patio area Rich built in the corner of our garden 15 odd years ago. A bit of ivy and other weed/rubbish clearance and I’ve ended up with a small, perfectly formed, shaded outdoor office space to sit and work in. The main tree, a Canadian maple we were gifted as a sapling from a garden across town, has in the intervening years grown to form a canopy of brilliantly bright leaves merging with an overflowing grapevine from next door.

This has distracted me this afternoon. My brain scrambling, jumbling and stumbling over the full panoply, the ‘impressive collection’ of people who still, 40 long years on, think learning disability is a cause of death or a reason not to resuscitate.

And our beautiful, beautiful boy, who spent hours in this garden each summer as the Maple tree slowly grew, one of the many dead. Dead. Not by ‘learning disability’ (you ignorant bastards). Death by the full panoply of the medical and other professions.

A day trip to Cherry Tree and a panel of sense

Posted on August 24, 2018 by sarasiobhan

Landmark judgement yesterday when a tribunal found the CQC decision not to let Care Management Group Limited increase the bedroom numbers in one of their houses, Cherry Tree, from 7-10, fair, reasonable and proportionate. Full details are here and are well worth a grim read. I just wanted to say something about the tribunal panel visit to Cherry Tree (from para 48 in the report). Just as a bit of context, 26 people live on this site (which is called Lilliputs) in different ‘houses’ and it was rated good by the CQC in their last inspection.

Unlike commissioners, regulators, providers, social workers and the like, the panel were just people visiting Cherry Tree. They weren’t wearing those fuggy learning disability goggles that erase any whiff of poor provision. They were human.

This is a taste of what they found.

It’s a 7 minute walk along an unlit, tree lined lane to the property. Can you imagine walking for 7 minutes to get from the pavement to your home?
The only signage was the care providers name. There was no evidence anyone lived there.
The fence was so high and made of wire in places that it resembled a young offenders unit. When the panel queried this they were told it was because one person had a habit of trying to run away. ‘But there’s always a minimum of 1:1 support’, puzzled the panel.
No smoking signs were dotted about. ‘This doesn’t happen in people’s homes’, said the panel.
Cherry Tree didn’t have a small scale and domestic feel.
The site is very isolated with only the occasional dog walker and ‘courting couples’ entering it.
The timetable of activities was regimented and there was no interaction between people living in the different houses on site. ‘That’s odd’, pondered the panel. ‘One of the arguments for extending the provision was to allow two young men in Cherry Tree more social interaction’. Staff gave different reasons why this was; compatibility issues/lack of staff training.
One of these young men was living in Cherry Tree because he enjoyed rambling. In two years he has not been rambling.

The wondrous Dr Joyce from the CQC clearly explained to the panel

It is not normal to have to live with others in order to enjoy the benefits of relationships/interaction.

No. It bloody well isn’t. The panel said despite the protestations of Care Management Group Limited, the place was both a campus and congregate setting and found in favour of the CQC.

This is a brilliant judgement and shows that the CQC and service provision is heading the right way. What needs sorting now, urgently, is how a CQC inspection could give such dire provision a good rating. And how much this is replicated across the country. Again, it points to fundamental flaws in the inspection process.

On a chilling note, the panel raised this point by Care Management Group Limited (the Appellant):

In what other circumstances would you not aim for “best practice”?

It’s shameful this provider has the arrogance to waste time and money challenging the CQC decision. It’s chilling they were trying to extend warehousing in full view. It’s also shameful that the CEO of this bunch of cowboys, Peter Kinsey, is a Board member of Learning Disability England. If we’re to have any confidence in Learning Disability England, they are going to have to hoof him off the board sharpish. Maybe he could use the extra time sorting out the mess that is Cherry Tree/Lilliputs and start organising some rambling jaunts.

The solicitor, the student nurse and scholar activism

Posted on January 12, 2017 by sarasiobhan

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.

The disability studies assemblage certainly did, as she highlighted:

I particularly loved this comment.

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.

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. Sadly, 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.

Of rage and light…

Posted on January 6, 2017 by sarasiobhan

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.

image1-5

maurizio-pic

Raising a large glass of something…

Posted on December 23, 2016 by sarasiobhan

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.

14500198_10153758262670957_7567004032542312690_o

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

Oh dear Mike

Posted on December 18, 2016 by sarasiobhan

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

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.

Humanity, value, love and sunshine…

Posted on December 3, 2016 by sarasiobhan

Today, as part of the International Day of Persons with Disabilities, Learning 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.

l1025606-3

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

#CaminoLB reflections

Posted on November 7, 2016 by sarasiobhan

The #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.

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.

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.

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:

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.

With 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.

Flight of the Camino

Posted on October 23, 2016 by sarasiobhan

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.

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?]

A bit of a #CaminoLB update

Posted on September 22, 2016 by sarasiobhan

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.