The full panoply

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.

The home movie

Watched a home movie from 1999 this afternoon. A mate dropped the DVD round a few weeks ago. I treated it as a priceless thing at the time.  Looking at it. Wondering about it. Half remembering those carefree days. Touching the box. Kind of feeling something I couldn’t articulate. Sad, so fucking sad.

I realised we couldn’t play DVDs anymore. Times are a changing.

Last Wednesday

Tom wasn’t well. He wasn’t well earlier in the week. He messaged us about his illness from Sheffield. Rich rang him and said come home. I met him from the station. He wasn’t well.

Thursday

Our GP surgery wasn’t taking calls for standard appointments. Only emergencies. By early afternoon we called it as an emergency, phoned and re-registered Tom. He got an appointment (with cracking support from the surgery staff), was diagnosed with tonsillitis (in a nano second) and prescribed antibiotics.

Rich and I were due to fly to Oslo for a wedding leaving at 4am the next day. A plan involving my mum walking Bess. Owen and Rosie pitching up early evening for the weekend.

Around 9pm we were in a cab heading to A&E. Something was clearly wrong.

Tom was triaged immediately and had a convoluted 3 way IV gig put in the back of his hand. Diagnosis: quincy. IV steroids and antibiotics started in the inner sanctum of the A&E waiting room. Tears (and terror).

Friday

Around 2am a bed was found in the Vascular Ward on the West Wing of the hospital. A long, long walk, Tom and drip wheeled in a chair by a kind and sensitive guy. Bed in a ward/room with two other patients. A youngish guy opposite. And much, older guy next to him.

Rich went home. I sat next to Tom.

Such a long night. Punctured with crying, bell ringing and help seeking noises. The pretty much one nurse run ragged. Sad, dark sadness. Tom slept on and off with a snaggy snore punctured by terrifying silences. Brief whispered convos in the darkness. The odd chuckle.

I went to toilet about 3am.

“Hey, you can’t stay here,” said a new nurse in the brightly lit corridor. “It’s a men’s ward. They sometimes walk round with their tadgers out.”

I ain’t fucking going anywhere.

Rich came back after dawn and Tom was moved to the GP referral unit gig by an equally kind porter. There followed a day of exemplary attention, action, IV bag switching, care and kindness. A sackful of prescribed medication/mouthwash packed and delivered hours before the last bag of antibiotics had discharged its duty. Tom discharged two hours earlier than expected giving him time to watch the Liverpool match.

We went home and hung out.

Saturday

A new return ticket to Oslo was organised by the kindest of kind friends. Rich stayed at home. I set off for Heathrow in the morning. At Terminal 5 I waved goodbye to the cheerful driver unloading cases. At check-in I felt oddly light.

“I left my case on the bus…?” I said to the man standing next to me.

I rang Rosie.

Help. Love action.

“Wait at the bus stop. The bus should do a loop back from the central bus station or your case will be in Cowley to collect next week.”

45 minutes later the bus returned.

“What were you thinking?!” said the driver, pulling out my case.

Sunday

Yesterday

At home with Tom. And his playstation. We were able to watch the home movie.

Beautiful, beautiful footage of our beautiful boy. His curiosity and absorption in the spaces. Like the little kid in the photo above, running down the slope. With joy. Surrounded by people who loved him. There was even a clip of the ‘What a Wonderful World’ school play.

Love, love and laughter.

 

The Stobart Affair

The joy generated across the weekend on social media was snuffed out earlier when the Eddie Stobart company announced it wouldn’t name a truck after Connor (despite hundreds of tweets putting his name forward in response to their request for names). The Head of Comms messaged to let me know the ‘no’ last night. Girls names only. We had a brief exchange before I went to bed with a seriously heavy heart. I missed a call from a journalist during a meeting this morning and came out to a BBC report of the news. The story was updated across the day to include the names of men – Lee Rigby, Valentino (Rossi) – who have been named on lorries and a character called Optimus Prime. A Transformer.

The same BBC journalist rang back later and said “You seemed so… so joyful really, in your (blog) post at the weekend. Like you thought it would actually happen…”

Yep. I was and I did. Other people seemed to think so too. The twitter response was an example of the magic generated when a diverse set of people step up and act. The kind of action identified in the Civil Societies Future inquiry report. It involved people who had never met Connor and those who knew him well. Like Deekz:

What’s an Eddie Stobart truck? Er, handing over to Connor here… a loyal, loving and dedicated advocate for all things Eddie Stobart. I was also reminded of this blog post I’d forgotten about; The Eddie Stobart Story. Wow. This must have been when he left the condolence message for Eddie Stobart. [Howl]

By this afternoon my timeline was full of tweets expressing surprise, disappointment and bafflement at the news. Not surprising really. [Why not?]

Some of the key ingredients (for me) of the collective action witnessed in the support for Connor this weekend, and in the civil society stuff, are love, humanity, kindness, community and understanding.

Love, humanity and warmth were fuelling further love, humanity and warmth. The fire burning bright for the Eddie Stobart company to do the right thing.

It would have been so easy for senior Stobart bods to reflect on the extraordinary and unprecedented response to their tweet, do a quick google and decide to chuck their (flaky) name policy out of the window.

A Transformer…

So blooming simple.

Why not?

‘Did anything strange or startling happen today?’

I’ve been in awe over the last couple of days watching the depth of support for the idea of a lorry named after LB unfold in response to a tweet by Eddie Stobart asking for ideas for names. Some background can be found here. If you search for Connor Sparrowhawk on Twitter there are literally hundreds of tweets ‘voting’ for him. It’s truly extraordinary. Particularly the spread of tweeters; learning disabled people, self advocates, parents, siblings and other family members, medics, social workers, the police, tv producers, film makers, social care directors, academics, activists, MPs, a shadow Minister, human rights experts, senior execs from NHS Trusts, regulators and third sector organisations.

My dad used to come home from work just after 5pm every day when we were pups and always ask my mum ‘Did anything strange or startling happen today?’ before giving her a kiss. I’m not sure it ever did to be honest.

This has been strange and startling. With an equally brilliant background. LB was a huge Eddie Stobart fan. We’ve a trunk of memorabilia and bits scattered around the house still. He enjoyed nothing more than a trip on a motorway to silently and beautifully enjoy Eddie spotting in solitude. When Edward Stobart died, he wanted to express his sadness online.

LB’s auntie Sam contacted Eddie Stobart in August 2013, a month after he died, to ask for a truck to be named after him. This was the information she sent:

The company again responded sensitively:

Dear Sam,
Thanks for your email.  Due to the Stobart tradition of naming trucks after females we are unable to name a vehicle after Connor however we have wracked our brains and if you felt it was appropriate we could include a tribute piece in the next edition of Spot On the members magazine. If this was interest please could you send me a photo of Connor. I look forward to hearing from you.
Kind regards, Bonnie
Sam sent this photo of Connor and Rosie flagging up that the sweatshirt might be a pirate version.

[I don’t know if this was an authentic Eddie sweatshirt but it features in the top photo almost unrecognisably. The unit excelled in boiling and shrinking clothes.]

Some of the tweets in support of naming a cab after Connor have referred to social justice and what such a decision would signify for a typically marginalised group of people who are too often denied an opportunity to lead anything approaching a flourishing life. Wendy Greenberg captured this:


It’s within the gift of the Eddie Stobart company to balance the justice scales a little bit and generate warmth, delight and priceless joy to have a ‘Connor Sparrowhawk’ cab beetling around the motorways of the UK and abroad. I can’t even begin to imagine making sense of what this would mean for us amidst the horror of the last six years. Connor never stopped reaching for the stars [his family tree produced by the unit psychologist included Dappy and Tulisa from his beloved NDubz on the sibling line]. The idea of a lorry named after him is the stuff of dreams. It would further be a cracking reminder for health and social care staff (and others) of the importance, value and brilliance of people like Connor.

I hope you can do this. Looking at the hundreds of replies to your request for names Connor is belting it out of the park with little or no competition.

“A one off” and a week that was…

This has been a right old week. A week of something. Stuff. A maelstrom of emotions and some fucking shite. Tuesday involved a serious schlep to London. First stop a British Association of Social Work conference at their newly opened building in Kentish Town. A talk and run jobby. I was first on. Safeguarding and human rights: what do families need from social work? What do we need? Easy peas:

Thoughtfulness, understanding, knowledge, integrity,

action, transparency and honesty.

The questions were a joy and included “What music did LB like?” I legged it to Westminster to meet with Caroline Dinenage (Minister for State for Health and Social Care). We had a chewy discussion around learning disability/autism related issues together with the lead bod from the Department of Health. I left feeling (surprisingly) heartened that Caroline D has heart, grit and determination.

Sticking around for my next gig, I went up to the public gallery to watch some of May’s brexit debate. The last time I was up in that cosy gallery was watching Evan Harris, then Oxford Lib Dem MP, deliver something about learning disability right back in the day. I remember painting a slogan on a tired old sheet on the kitchen floor one evening and waiting with the large banner at the wrong bus stop outside the Thornhill Park and Ride. Relieved when a mini bus hesitantly pulled over and welcomed me in. The first time I hooked up with My Life My Choice members.

Funny old world.

It was grotesquely mesmerising to watch the non-debate ‘live’ in the Commons. I then headed to Committee Room 10 for the INQUEST launch of Legal Aid for Inquests: Now or Never! campaign. Despite political distractions the room was packed with over 40 bereaved families, members of both Houses, journalists and third sector representatives. Bishop James did a sensitive and exemplary job of chairing a passionate and angry meeting. Three of us – Tanya El-Keria whose daughter Amy died in the Priory and Tellicia whose brother Kevin Clarke died after being restrained by police in London – spoke before the Minister of Justice, Lucy Frazer, responded. She didn’t shine. Trying to defend the government’s baffling refusal to introduce automatic legal aid for families at inquests despite weighty evidence was never going to work.

A summary of the launch by Hardeep Matharu is here. Despite the lacklustre performance by Frazer, captured on each face below, the sincerity, determination and rage in the room was palpable. Labour shadow minister Richard Burgon pledged to reform funding for state related deaths and there was a strong feeling that this is a battle that will (so fucking rightly) be won.

Then to Thursday and the re-opening of the disciplinary hearing into Valerie Murphy’s (LB’s psychiatrist) disciplinary hearing. She had been suspended for 12 months after a marathon hearing that stretched over seven months. She wasn’t struck off partly because of the ‘mitigating circumstances’ of working in the field of learning disability [I know]. Her catastrophic failings covered pretty much every bit of clinical practice. Including the very basics of epilepsy care.

This particular ‘medical’ note haunts me. Not just because it captures her clinical ineptitude. The wording reminds me of commentary about rare or endangered animals.

Evidence of how deeply LB was failed is written into and stamped across pretty much every communication captured during the 107 days he spent in that place and in every review since. The saddest piece of ‘new’ info that emerged from the original hearing for me, was that Murphy didn’t go on holiday until the Saturday after LB was admitted on the Tuesday night (March 19 2013).

We naively assumed she was on leave when he was admitted which is why she didn’t meet him until almost mid-April. She simply didn’t bother to wander over and see a young man admitted in a state of intense crisis before her two week holiday.

This is a tormented sadness (not the right words but no appropriate words exist). She was clearly so fucking crap that it didn’t ‘matter’ when she met him. [I struggle to type these words]. It really didn’t matter.

I can’t (I refuse to) shake off the puzzlement and heartache of how a specialist learning disability (responsible) clinician could ignore a newly admitted patient knowing she was about to go on leave for two weeks. My work doesn’t affect people’s lives/health but I prepare for holiday absence and colleagues do the same. I can’t understand why or how she could do this. [And before the thankfully small portion of medic defenders start with ‘she was so busy’ shite she wasn’t. There were four other patients.]

Murphy pitched up in Manchester yesterday with her potpourri of dry and smelly bits to woo the panel. They swallowed it and decided her fitness to practice was no longer impaired. Her abysmal non care of LB was a “one off”. No questions asked about how this could possibly be or (as chillingly) if it was, why?

The panel in a fuck you statement announced that ‘a reasonable and well informed member of the public’ would agree with their decision to find Murphy not impaired.

They are wrong.

It’s impossible to articulate the intense distress and harm these hearings generate for bereaved families. I understand they are stressful and distressing for health or social care professionals. I get that. As bad as professionals may feel, they typically go home to their families though. They don’t live with an intense pain that defies articulation, loss and an absence that regularly winds, wounds, generates panic, anxiety or worse. They don’t desperately try to hold onto the smells temporarily woven into clothing, visit the earthy spaces where their children are buried or scattered, and regularly howl at the sky.

They simply don’t.

Finally, two brighter developments. As the week unfolded, I missed a call out on twitter about the naming of Eddie Stobart lorries and the brilliant and collective responses to this captured by @Karachrome in this post. I can only imagine what an Eddie Stobart lorry named after LB would mean.

And this morning Julia Unwin mentioned LB in her keynote talk at the Nuffield Trust annual Health Policy Summit. The magic, the joy, the fucking kick ass ‘we can do this’ collective action continues.

Let’s do it.

Kark and Percy

The Care Quality Commission (CQC) have a Fit and Proper Person Test (FPPR) process to review whether senior NHS bods are fit to practice. [Sorry about the acronyms and jargon here… Just typing ‘fit and proper person test’ makes my finger tips weep.]

I referred Katrina Percy, then Sloven CEO, to this process in 2015. Mike Richards, CQC Head of Hospital Inspections, ‘missed’ my email. After some chasing he said there was no doubt about her fitness to practice. Case closed.

Jan 2016 and unfitness evidence was stacking up. I referred her again. No reply from Richards. At the end of Feb I tweeted about the lack of response. He emailed saying:

Dear Sara, I apologise profusely for the fact that I must have missed this email. I know that this is not the first time this has happened, but I have absolutely no recollection of having seen it.

No? Mmm. That’s interesting. Percy is a prolific ‘absolutely’ user in communications.

Then nothing. I chased up the referral in March, May and at the end of July. Tim Smart, interim Sloven board chair, decided Percy had done nothing wrong around that time and the referral disappeared. Absolutely nothing to see here.

Why am I raking over this old billy bullshite?

The Kark Review

Tom Kark QC was asked to review the FPPT earlier last year on the back of a review by Bill Kirkup [keep up]. The review which has allegedly had a bit of a tasty journey to publication was published yesterday. A refreshing read in terms of sense and straightforwardness. And so, so chilling. I shudder to think what, if anything, might have been stripped from it. He presented a picture of what can only be called corruption. Three short extracts:

Agreed ‘vanilla’ references? Eh? Really? Is this common practice in the NHS (or wider public sector)? Deceit and incompetence wedged into senior layers while candour and transparency are bandied about like a [fuck you] hope carrot for the rest of us herbs.

Breathtaking hypocrisy.

Two of the seven report recommendations were accepted by the government before the shutters shut. Kiosk Keith styley.

Meanwhile, Percy’s new role emerged on twitter.

And I learned that ‘vanilla’ biographies are also a thing.

Global CEO, Ryalto

Global CEO, Ryalto.

Grotesque spin and reinvention.

Delivering operational turnaround of services… leading organisations through transformational change. In March 2018 Judge Stuart-Smith, sentencing the Trust, referred to the ‘dark years’ of Sloven and issued the largest fine in the history of the NHS.

Designing a comprehensive leadership development and culture change programme. ‘Going Viral’ was an almost comedic (although of course it wasn’t) ‘thing’ which cost about £5million in public dosh. The proof of (this ‘leadership’ programme is) in the pudding as they say. Earlier today Sloven were in the news again for failing services.

The pudding was shite. It simply didn’t work.

She now heads up the global team at Ryalto. A quick google reveals a tiny UK based company with a website light on detail.

Global team my arse.

HSJ awards are not shining here. A money spinner for the Health Service Journal. Self nominated nominees and Trusts shelling out big bucks for the black tie drenched reveal gig. At the same time producing dirty little numbers for the vanilla biog and reference filing cabinet. Glittery tat for bolstering failure drenched narratives.

Not a good look @HSJEditor. For so many reasons.

Percy has taken monstrous to a new level here. Providing a contemporaneous example of the grimness laid out in the Kark review. A failing exec covering up her history without compunction or check.

She’s not alone of course. All those who protected her, bolstered her or looked the other way over the years have a right old stench on their hands too.

Maybe one day these people will have the guts to properly reflect on their actions and non actions. I blooming hope so.

‘Second victims’, the aftermath and incoherence

[2.2.19]

I was surprised and enraged a few years back when I heard health professionals are considered to be ‘second victims’ when a patient is seriously harmed or dies a preventable death. Second victim? Really?

Families are ‘second’ I thought, raged and tweeted. Repeatedly. Our loved ones died or experienced serious harm. We’re left (typically unsupported) to deal with devastating grief. Seeking accountability from a national health service that has an apparently Pavlovian response of shut up, shut down, fuck right off and we will throw every resource we can grubbily wring from the public purse to defeat you.

[I don’t like the word ‘victim’. It’s passive and pathological. It stamps out individuality and erases the ways in which people negotiate and pick their way across tricky or brutal terrain. The ways in which they draw on sophisticated understandings, experience and strategies in grotesque settings. Erasing vibrancy, life and love.]

On a dark, cold, wet evening last December I bumped into the support worker who was on duty the day LB died. The person who found him in the bath.

Meeting staff

After LB died we didn’t want to see or speak to anyone involved in his ‘care’. [The staff were a mixed bag of good, mediocre and foul.] That morning the A&E consultant told us that some staff members were there and wanted to meet us. Sitting, in a state of (what?) I still don’t have the words to describe what it’s like to be in the family room you rarely (if ever) notice during the odd visit to A&E over the years with minor injuries and knocks. I can’t remember the sign on the door now but I remember the horror seeping through my veins, the prickling pain, incomprehension and fear, reinforced by gaining access to this tiny, claustrophobic space. A hair’s breadth from A&E cacophony. Metres from the bus route to town. A ten minute walk from home.

He told them it wasn’t appropriate.

My mum, with the support of family and friends stepped up to communicate with the Trust. Email exchanges archived in a tear stained folder.

We’ve since met or spoken to some staff and seen others give evidence (on paper and in person) at LB’s inquest.

Rich spoke with the senior nurse at LB’s inquest and I’ve talked with him on the phone a few times. We met with one of LB’s key nurses at the inquest (the one who said sorry to us while giving evidence.) A mate (the indomitable Fran) was in touch with a support worker a few years back. He came round one Saturday morning.

In the meantime, Katrina Percy, Sloven CEO, made repeated attempts to try and get us to meet with her. A blunt hammer approach. She never made the purpose of this meeting clear or made any effort to answer the questions we had. Other influential people also ‘encouraged’ us to meet with her. We declined.

Answers and more questions

December 2018. I saw MH before she saw me.

I dunno. I’ve struggled to try and make sense of this encounter. To organise it into letters, words, sentences, sense. Sense. Type. I know it wasn’t her fault. Being on that shift, that morning. I just want to know.

What?

I said her name and she turned round.

She cried.

She cried like I cry.

She cried. And her tears didn’t stop.

Writing this I’m kind of recoiling from the keyboard, I can’t stop crying. Fucking crying… [How is he dead? What the fuck?]

Those tears.

I’m so sorry.

[3.2.19]

I’m trying to generate some coherence by patching together previous, contemporary, retrospective stuff. Knowledge. It’s impossible. So many layers. So much pain, so much sadness.

Two of the things MH told me that evening:

  1. The day after LB died she contacted a dating agency for learning disabled people because he’d always wanted a girlfriend. That night last December was her last night working with them. After five years. She was about to return to education.
  2. LB’s second key nurse KD wrote us a letter after LB died but wasn’t allowed to send it to us.

In the boxes of paperwork, records, subject access and Freedom of Information documents, I remember coming across an email trail just before LB’s inquest 2015. It ended with KD asking the unit manager to tell us how sorry he was. Dated the day LB died or the day after.

Back in the day, we said we’d like the other four patients from the unit to attend LB’s funeral if they wanted to but we didn’t want any of the staff involved in his care there. The response was something along the lines of ‘these patients need to be supported by staff who know them well and understand to care for them’. [I know.]

I’m chucking the coherence towel in now to finish this post. Maybe I’ll rewrite it at some point in the future.

Here’s an interim set of thoughts which I hope are of use to someone working to improve the experiences of bereaved families when someone dies a preventable death in the NHS.

  • I’m sorry our blanket refusal to engage with staff immediately after LB died caused further harm.
  • We know so much more now (in terms of the ‘dark years’ of Sloven) it’s difficult to disentangle what we (others) should have done, or thought, at that time.
  • The person who dies (or experiences serious harm) and their family should be the central concern. Staff (and other patients) should also be given appropriate support.
  • The Trust should immediately say sorry and not prevent any individual staff member from doing so.
  • It was clear in October 2015 that the Trust were cutting adrift numerous staff members as we ended up with 8 different legal counsels at LB’s inquest. This should be the focus of scrutiny by [who? NHS Improvement?] A well led Trust should not be in this position.
  • The involvement of in house Trust legal teams further scrapes away humanity which should be the core ingredient of every interaction with bereaved families.
  • Trusts are able to draw on seemingly unlimited resources from the public purse to defend themselves when something goes wrong. This fact may generate further disregard for families (and frontline staff) in poorly led Trusts.
  • There is a gaping hole here around support, communication and humanity. And something almost ironic about the terrible harm our national health service can repeatedly wreak.

Layers of ‘Phil’ and a New York break

A short break in New York last week. Arriving mid-evening Wednesday Rich and I were determined to stay up late to nail the time difference. The hotel bar was packed and we ended up in a two person booth with someone waiting for his mate, Phil.

“Hey, sit down!” said booth mate in a booming voice when Phil pitched up. Shaking us from a firmly wedged in, warm, exhausted, sneaky pre-slumber.

“Nah, I’m good. I’m too fat to sit there!” said Phil cheerfully dismissing the 6 inches of seat on offer and ordering a Four Roses bourbon.

A Four Roses bourbon.

It turns out, Phil, an expansive, personable New Yorker, had worked for 30 years at the Creedmoor Psychiatric Center. Working with people now called ‘developmentally disabled’. So many different labels over the years, he said with feeling, holding his hands up. Reminding me of Joyce Davidson’s ‘More labels than a jam jar’. My exhausted brain puzzled over how we’d landed in John F. Kennedy airport only an hour or so earlier and were now talking to someone intimately immersed in New York learning disability history.

Creedmoor where?

Over a couple more bourbons and with the lightest of prompting, Phil talked about his (working) life. He’d worked his way up from carpenter’s assistant to carpenter to estates director after his parents died in his teens. He was on a countdown to retirement in the next few years with a cracking state pension. His long term aim. He’d stopped making padded cells in the late 80s…

Patients at Creedmoor seemed to be people to Phil. He was concerned about the push toward deinstitutionalisation by New York State because of inadequate community facilities. How can people get their haircut, see the dentist, chiropodist, get healthcare and hang out when they are scattered and isolated? People should be ‘supported to progress’ he said.

What did good look like to Phil? “Managers who are on the phone to me all the time to mend stuff, to sort stuff. They’re the good ones.”

Creedmoor.

I dunno. The strands, the brutality, the human rights breaches, the glaring and yet apparently fine smashing of rights. I mean rights are right, right?

I’m left wondering about the layers of ‘Phil*’ in these spaces. In ATUs and supported living places in the UK. I don’t know if Phil was who he seemed to be. But he seemed to be a decent guy. How much did Phil do? How much did he ignore? Did he call out brutality? Are there gradients of brutality in practice and if yes, how are these measured? And who decides?

Why are learning disabled people routinely terrorised?

Day One (two)

The next day the sun sliced through the freezing air, bouncing in, off and between buildings. We walked, talked, watched, saw and listened with only a vague plan of what to do and where to go. Late afternoon we fell into the Stonewall Inn, Greenwich Village. Where pride began. Happy hour. Over the next hour or so, sitting at the bar we heard first hand accounts about the Stonewall riots, spaces and original places. Tree, the barman, has worked there or thereabouts for more than 40 years.

“I met the queen once in England”, he said, in between serving customers and dishing out happy hour tokens. A mate had invited him along on some London gig back in the 70s. Another customer, an HIV activist, wearing a natty red suit, white shirt and red sparkling tie provided more detail about the riots. He was concerned New York State thinks HIV is sorted now when it isn’t.

Tree came back with his phone. He swiped through to a faded photo of a young queen and a couple of young men.

“That’s me,” he said. Pointing to the back of a tall 70s hair head.

He swiped through a few more photos.

“And here I am in the 80s and, yeah, the 90s”. Extraordinary photos from pre-selfie days.

The Stonewall riots in the late sixties. Fifty years later the bar was heaving, loud and joyful. Phil stopped making padded cells in the late 80s. Why the less than snails pace on change for some people?

When we were leaving, I asked Tree I could take a photo of him. He darted out from behind the bar to be in a (rare) photo with me. He’s about to turn 80.

The next day or so we walked some more. And simply enjoyed. It was a good break.

*

This isn’t about Phil.

Birth and birth days

You’ll [‘d] be 24 today. Wow. Just wow. 24... Nearly quarter of a century. You’ve leap frogged from 18 to 24 while remaining 18. We’ve grown older. Living each of these in between years with steadfastness and some brutality.

You beautiful boy. You beautiful, brilliant and kick ass dude. My blooming tears remain as unruly and uncontrolled and I’m glad. I look at photos and just remember being with you. Hanging out. That’s what we did. We just were.

I can’t imagine what you’d look like now. I know you’d be strong, principled, gentle and kind. Precariously occupying a space in which these characteristics are ignored or tossed aside by ‘services’. Still.

It’s beyond wrong that the simplicity of everyday, ordinary life continue to be destroyed by a lack on the part of the state.

You should be celebrating your birthday.

I despise the utter emptiness of these words.

Birth

I remember when you were born. A ‘birthing pool’ filling up a tiny living room. High sides and an enormous volume of water. A birthing pool [Eh? Where did it come from? There was no internet then.] Was your love of water forged in the moment of being born? Being born. Becoming.

Generating numerous heart stopping moments in life guards across the years. Sinking, submerging and eventually reappearing. With dazzling joyfulness and flicking of that thick mop that resisted getting wet.

Until you didn’t. Failed by a greedy and beyond arrogant NHS Trust which focused only on reputation and dosh.

Birthdays

I was in London last weekend for a Reblaw event you’d have loved. A bunch of knowledgable, enthusiastic, feisty and committed students/lawyers smashing human rights law. It was in Moorgate. Coming out of the tube station I stumbled on people heading for the Lord Mayor’s parade.

The Lord Mayor’s parade.

Remember that birthday trip? The lost day we spent on the bus? Stymied by the Lord Mayor’s Parade… 2010? Eight years ago.

Eight years.

You were all ‘children’ then. Some hovering in the hinterland between child and adulthood. Sucking up the foiled outing. It was a cool outing for you. An amnesty on typical kid stuff by the others. It was your birthday. We were all thinking about you and your birthday.

Three years later I dropped the thinking ball. I still don’t know why. I’ve been accused of all sorts. Working full time. Not flagging up that staff should supervise patients with epilepsy in the bath. I dunno matey. Do you remember when you wanted me to apply for the post of Head of the Metropolitan Police? We chuckled about this.

When you raged about being asked to empty the dishwasher and called on imaginary human rights specialists we laughed. We didn’t notice when the large, heavy based saucepan of nosh, nourishment, love and family life suddenly went cold.

Your nephew is one this week. His mum posted a montage of photos and videos on Facebook. So blinking cute. You’d have loved him. Asked endless questions about him. Stood protectively over him like you did your classmates who needed tube feeding at school. Living your life as much as you could in line with your values of what is right, family and love.

Love

I miss you with an ache, a yearning, something impossible to articulate.

I retreat to a space of joyful memories and an overwhelming sea of love that buoys me in the moment. Thank fuck. A space I will guard with every fibre of my being. Wide open spaces of sky, beauty and being together.

A heavy based saucepan I will not take my eyes off.

I received an email earlier today that underlines this wondrousness. I don’t think the author will mind me quoting part of it.

[….] when I’m not sure if I can pull off what I want to say, if I’m in danger of losing my nerve or of going with the flow, I think about Connor and I just say something.

Paraphrasing Rosie from back in the day; you made us feel safer.

Love. Just love.

The Job Interview

I recently applied for a new job. A first since LB died. Over five years of campaigning, hearings and time off. Illness. Work derailed.

The end of death investigatory processes neatly dovetailed with Tom (our youngest) going to university in September.

Unexpectedly home alone space. Time. Time to work. And a relevant job. Timing and fit.

What fit though? Troublesome sweary ranter, thorn in the side of NHS bodies/big charities, determined activist outsider. Or an informed, critical academic?

I dusted off my CV with eyes firmly clamped closed in places. LB sitting squarely at the centre of it all. I can’t ‘weigh up’ his death against the Research Exercise Framework (REF). Academic marker of apparent ‘excellence’.

One referee in discussion about my application said:

I don’t know whether to focus on your CV being robust despite what has happened. Or think about what you could have achieved…

No. I don’t know. How the fuck could any one know?

Does academia have space for activism? [Not really]. How does fit work in practice? Conventional compassionate leave doesn’t fit with our experience. It’s not a one off chunk of time to grieve. More barbaric, drawn out processes – police investigation, GMC and NMC hearings, inquest and HSE investigation – involving consistent and repeated dragging back down and compounding horror.

Six years ago I had a reasonably bouncy, bright academic future.

I was shortlisted. I prepared carefully and thoroughly. The two nights before the interview involved terrible (and unusual) nightmares and long periods of wakefulness. The night before I ‘experienced’ an earthquake on an apparent Italian island in such graphic detail I woke feeling I could write a substantive list of what to do and not to do in the event of such a catastrophe. Grimly devastating.

The interview process involved a lengthy presentation to departmental staff in the morning and interview in the afternoon. The presentation seemed to go alright. Warmth and interest from potential colleagues. Entering the same room three hours later I felt ok until the first question. The room was suddenly boiling hot and felt like it was shifting. I couldn’t think. I began to stare fixedly out of a window that was opened and then shut because it was too noisy. My answers incoherent or worse until gently coaxed by panel members to produce something resembling sense.

Then it was over.

I left making cheerful and appropriate noises. I rang Rich to say I didn’t think it had gone well and caught the train home. At Crewe out of the blue Sooty tears kicked in and continued to Oxford. I wasn’t ‘crying’. More leaking seeping fluid at a rate that was impossible to mop. I just let them roll.

That night and the next day I felt utterly shite. Traumatised. Revisiting my answers which became worse in my mind. I felt intense sadness wondering if the MPTS cross-examination was going to haunt me forever. Were the ‘investigatory’ processes going to become more devastatingly damaging than LB’s death? [Howl]

Over the weekend with visits from the kids and others I largely forgot about The Interview. The experience occasionally revisited with a mix of groaning, humiliation and laughter.

This morning I spent some time photographing plants in the beautiful late autumn light. Peaceful, reflective activity. Capturing cheeky kickass and forthright daisies and astonishing colours.

I didn’t get the job. I didn’t make a strong enough case for the fit between my research and the post.