Walk on the High Line

L1030990

I entered New York three times for the first time over the last four days. Train from Boston Friday, car on Saturday evening, Coach USA today. Arrival into Penn Station, via the George Washington Bridge and the Lincoln tunnel.

Friday involved an in and out, without stepping out, of stations. Cloaked in a humid, frantic and harsh Friday evening space. New York a promise of familiar names, signs and lifelong memories.

L1030878

Saturday evening I walked a chunk of Manhattan Island with the friend/colleague I was staying with in Nyack. Promise more than realised as we grazed Central Park, Times Square, 5th Avenue and the Empire State Building.

Today I caught the bus from Nyack and checked into the New York Yotel. Mid afternoon, I went to walk the High Line. The park that almost wasn’t.

L1031165

Built on a historic, elevated freight line destined for demolition… run by the non-profit conservancy Friends of the High Line which relies on individual donations.

A disused elevated freight line made into a park. An extraordinary, joyful space with original tracks, plants, walkways, seating, artwork and views.

L1031005

L1031025

L1031040

L1031052

L1031130

L1031042

And then I came across the choir.

L1031136

L1031141

L1031142

L1031146

L1031150Truly wondrous.

Eh? Sorry, what was that? A park on a bridge across the River Thames? 

Final day in Old Orchard Beach

Staying at the Pine View Motel. Motel life. A glimpse of a pool here through the window and beyond, Saco Avenue, the main road between Old Orchard and Saco. I worked, Skyped, went to the laundrette [exceptional] at lunchtime and late afternoon walked the beach.

I walked the other way under the pier this evening towards Brunswick. Sea gulls stood almost to attention with a haughtiness along the beach while tiny (groups/gaggles/ chatters?) of sand pipers (I think with a quick google) added a joyous layer of fun and playfulness. Tripping over themselves without touching, chasing and ducking the waves.

I met Pretzer (or Prezzer) and his owner. A dog who loves the beach.

At JJs Eatery, where I ate, Halloween preparation was underway with serious attention.

On the way back to the motel I passed Lisa’s Pizza. Squaring, or circling the Old Orchard Beach experience. A place where you can order a pizza and someone will deliver it and wait. No stops necessary.

Rib beef buffet and Eric Spoonton

Quiet day in Old Orchard Beach. Skype calls, work in my motel room and a walk along the beach late afternoon where some nifty painters were busy at work in the sky.

L1030709I had dinner in Strike Zone, sitting next to Peter who was carving an enormous piece of meat for an ‘all you can eat’ buffet. Another deadpan legend.

“The pumpkin mash is amazing. Did you make it?”
“Nah. None of it”.

Custom was steady with a few rules in operation.

L1030737

“You need a clean plate.”
“This one’s fine.”
“No you need a clean plate. It’s the rules.”
“Ah. I’m all for rules.”

I started to take some pictures.

“Where are you from?” He asked.
“Oxford, England.”
“We had someone from Manchester the other week. He really loved the pickles. ‘I love the pickles so much!’ he said.”
“That’s cool. Is that beef?”
“Yep. Prime rib beef. All you can eat. On Fridays it’s all you can eat haddock.”
“Wow.”
“Make sure you take a photo of Eric Spoonton.”
“Who?”
“Eric Spoonton. Like Eric Clapton.”
“Ok.”

L1030741

Riding the bus to Old Orchard Beach

L1030589 (2)A pitstop in Boston and then the Downeaster Amtrak to Soca for three nights in Old Orchard Beach. Old Orchard Beach on the Maine coast. A place name that oozes nostalgia, honey, nuts and vanilla, quaintness and a slow pace of life.

IMG_3140Outside Soca station (it turned out the train doesn’t stop at Orchard out of season) a frazzled woman with three cute tinies was on the phone to the taxi company.

‘An hour?! I phoned from the train an hour ago and booked it for 3.15pm. Why will it take another hour!”

“There’s only one taxi left in town,” said a woman with a deep voice, sitting on a nearby bench.

This interjection was ignored.

“Well what am I supposed to do? I mean I don’t even know where we are. I phoned an hour ago!”

“Soca,” said the woman on the bench. Delivering deadpan worthy of Greyhound Dave.

I was hoping to get a cab given the unexpected journey  but a) my phone wasn’t charged and b) it wasn’t looking likely given the one cab in town scenario.  At that moment, a jumpity old bus oozing with character pulled up bearing an  ‘Old Orchard Beach’ header. Mmmm.

$1.50 stuffed into a metal box and entry into the world of the Soca/Old Orchard Beach shuttle bus. A bus that has no stops while stopping any where.

I was reminded of Rachel Simon’s book ‘Riding the bus with my sister‘ as I asked the driver about my motel destination. This became the collective concern of pretty much everyone on the bus. Where was my motel and how would I get there? From a bus which seemed to wander around Old Orchard Beach picking up anyone who nodded.

At one point, a passenger got off the bus to pick up a pizza he’d ordered which was being held by someone on a park bench. The driver took the opportunity to get off too. And try and get a bit more local intel about my puzzling destination.

By this stage my iPad was being passed around the bus as people zoomed in on the red flag that identified my motel and the blue dot that marked where we were. Kind of near really. Close enough to walk.

The passenger reappeared with an enormous pizza box. Followed by the driver.

“I think what you need to do is to get off the bus when the blue circle gets close to or at the red flag.”

Everyone nodded or murmured in agreement. Conversation turned to the unexpected closing of Dunkin Donuts.

L1030631L1030642

 

 

Greyhound days, Dave and the red pear

L1030460

When I got to the Montreal Greyhound station this morning the queue had woven untidily through available space and back almost out to the pavement. I thought about the Oxford to Newcastle Megabus (a nifty six hour journey) I pass on the way to work. Seeing the odd, pale, typically beaten passenger having a quick puff on the pavement.

L1030457

I parked these reflections. This was going to be a bus journey and a half. I had music, books, wifi, kip potential and the Vermont autumn scenery to soak up. By the time I reached the front of the queue other stragglers had joined and we were directed to another bus. A new bus. An express bus. Driven by Dave.

Dave.

I would want to employ Dave, or a someone like Dave, if I ran my own organisation. A exemplar in minimal interaction, keeping passengers informed/in line, and doing what matters.

I settled into a seat next to a woman wearing a round straw hat with her nose very firmly in a book. ‘Don’t talk to me’ she said without words. Comfy seat, space and big windows to beak through. A greyhound on the right side of shiny.

L1030458

There was chatter at first. People exchanging peculiar transient life fragments; where they were going, where they’d been. Why we were on that bus. The demographic was mixed with a hefty dose of young, scrubbed student types.  An older Greyhound-pro on his way to give an engineering lecture sat in front of me. He had a striking comfortableness with the process. Leafing through his newspaper he could have been sitting on a hotel balcony with a cup of coffee.

An hour or so into the journey the bus was largely quiet. People hooked into books, phones, tablets or dozing. There was weighty traffic as we approached the border and we inched forward slowly.

“Can you hear me?! I’m stuck on the bus. I’m stuck on the bus at the border. I don’t know what time. I’ll ask the driver.”
“What time will we be stopping in Brunswick?”
“We’re not stopping in Brunswick. This is an express bus.”
“But my ticket says Manchester.”
“You’re on the wrong bus.”

The promised border guard eventually appeared. After a brief chat Dave told the woman caller to get her stuff and wait for the next bus. The rest of us were get off the bus with our ‘on bus’ bits. Cases could stay in the hold.

“Is this yours?” said the young woman sit across the aisle to me. “It fell into my bag when you stood up”.

My red pear. From my hotel breakfast.

“Thanks…”
“You might have a bit of trouble with that pear. You aren’t allowed to bring fresh fruit into the US.”
“Oh.”
“You might want to lose it or declare it…”
“Lose it? Like leave it on the bus?”
“Mmm. That might make things worse. You should probably declare it.”

I got off the bus with the pear and a tub of grapes humming in my bag. We were herded into a new queue.

“Does anyone want a grape?” I asked.

The grapes went down well. I was allowed to keep the pear. Back on the bus we drove through spectacular countryside, had a break in torrential rain at White River Junction and arrived in Boston around 7pm.

 

 

Dave switched the lights on.

“Are you visiting Boston or do you live here?” asked the woman sitting next to me.

So much more than a ‘bus journey’.

I was taken back to this transport related piece of wisdom from LB.

Dog stuff and the Greyhound to Boston

L1030374

I’ve been in and around Montreal for a week now for work. This has involved a bit of time spent exploring a brilliant and friendly city, a shite Airbnb experience and an unexpected and wondrous Thanksgiving meal.

And the usual snapping.

L1030314 (1)

L1030186

Tomorrow I’m taking the Greyhound to Boston from Montreal. A 7 hour trip. Once I booked my ticket my wanderings became strangely more about dogs.

L1030415L1030442L1030396L1030443

A bus shaped space to think about LB. And maybe meet some interesting people.

 

 

 

They put their cameras down

On Monday Sloven pleaded guilty to the HSE (Health and Safety Executive) charges. It was a short hearing. The district judge referred the ‘case’ to Oxford Crown Court for sentencing. He stressed it was important that time was factored in for the crown court judge to carefully read the papers and for a full day to be scheduled for the hearing. He was deeply kind and sensitive, recognising how awful and serious it was that LB died. He made a point of acknowledging our family (my mum, sister Agent T and Tom attended).

We met with the HSE and their barrister, Bernard Thorogood, before and after the hearing. They explained the process and answered questions carefully and thoroughly. At the end they went to let the various press (including the BBC and ITV) outside know we didn’t want to be interviewed. We’d been filmed walking into the building.

They’re still outside. I’m sorry but we can’t do much about it. If you’re prepared to stay till 5pm or so they may have given up and gone… A bit of advice is to try and keep a fixed expression on your faces when you leave.

We grimly walked out of the Banbury Magistrates Court and passed the gaggle of journalists and camera people.

They put their cameras down.

And more…

It was an unexpectedly moving day. With the kindness and respect shown by the judge, the HSE and Bernard T, the media. Julie Dawes, Sloven CEO, attended.

The hearing date has yet to be set but will be in the next few months, possibly early January. Bryan, the My Life My Choice coordinator, emailed this afternoon:

The trustees want to attend on mass (probably 12-15 people) Oxford Crown Court for the SH sentencing.  They wanted to know how you might feel about this rather than them just turning up unannounced.

What do we feel? What a bloody brilliant  idea!

Let’s make it big. Let’s make it colourful and let’s mark this milestone in the lives and deaths of learning disabled people in typical #JusticeforLB chaotic and love coated fashion.

Who knows who may turn up.

 

 

The afternoon before the hearing

 

old-pics-2-2

I spent the afternoon with Tom trying to get photos from an old mac that’s been gathering dust and more upstairs. Eventually, after exemplary focus and persistence by Tom, and a few chuckles along the way (yep, yep, my computer smarts are shite, I’ve a desktop that demands a cone of shame and I’ve not updated anything since about 1749), 451 pics from the (g)olden days are now on my desktop. (A fair few have an alarming luke white question mark but we can save that battle/puzzle for another day).

Above is LB ploughing his own path up a hillside holding tightly onto to his i-summat music player. The gadget he produced myriad playlists on, back in the day. Each with one song on.

It was our last family holiday in 2010. He did what he typically did; stuff (the day out in the Black Mountains with a makeshift picnic) in his own way, own time while breaking nonsensical and meaningless rules along the way. So what if he was far behind? He got there in the end.

Before we got stuck into this task Rich and I walked into town to get a hard drive. On the bus home Julie Dawes, Sloven CEO, rang in response to my email from Friday. Good for her for calling back. I want to present the gist of our conversation here because I think it contains or flags up important elements/ingredients for the relationship between Trust staff and bereaved or harmed families.

The Sloven board apparently made the decision that no board member would attend the Health and Safety Executive hearing at Banbury Magistrates court tomorrow for ‘various reasons’. This was because they decided it would cause us further distress and it was ‘usual’ to send the communications manager to such hearings.

Julie Dawes rang me out of the blue on Friday because she was worried about the distress their planned press release would cause us. We weren’t asked whether the attendance (or non-attendance) of a senior exec at the hearing would cause us distress. This suggests that baby steps of improvement (concern about press release distress) remain coated in relentlessly longstanding concern about Trust reputation. And an accompanying lack of really understanding what is important to families.

You can’t assume distress in one area (attendance at the hearing) while checking it in another (press release content) without raising questions about what is actually ‘important’ here. Our feelings as a family or Sloven comms/reputation.

And when you’ve endured the extraordinary through Trust actions like we, and so many other families, have the ‘usual’ is irrelevant and obscene.

It’s really time to start walking up hills using the example of LB (and others) if you mean business around changing practice. Chuck out the grotesque, the turgid, the meaningless, the offensive and step up. Demonstrate the ‘impact’ a patient’s death has had on your organisation with actions. Not talk. [As an aside, and a frankly unapologetic plug for my book, one of the things I learned from early readers was ‘show don’t tell’.]

Think about the thin arguments you’re making and challenge them yourself. Instead of sending the comms manager ‘as usual’ (I struggle here with what ‘usual’ is in such circumstances), make sure a board member pitches up, even if you anticipate a five minute hearing. LB wasn’t given the chance to live. Don’t show further disrespect or worse by thinking it’s only a ‘five minute hearing’, or because you want to downplay the importance of the hearing.

Stand up publicly and show you fully understand and recognise that your organisation is responsible for the preventable death of a patient. Until you do this, no other fucker is going to.

Julie Dawes said on Friday she wanted to offer any personal help she could. It turns out this was distinct from arrangements around the hearing tomorrow and board decisions about attendance. A revealing comment (which is not to knock the offer of help which we appreciate). For families ‘the personal’ is too often the process. And the obliteration of humanity through that process.

By the end of the conversation I think we were sort of on the same page. I appreciate her sticking her neck out by ringing earlier. I hope productive discussion followed our fraught conversation. And I hope some respect will be shown to our beautiful boy who died in the cross hairs of a greedy, arrogant and failing Trust, local authority and CCG, tomorrow.

He deserved so much more.

OLYMPUS DIGITAL CAMERA

 

 

Imagining a guilty plea

L1029589-2

The Health and Safety Executive (HSE) prosecution against Sloven is scheduled for 2pm Monday at Banbury Magistrates Court. If the Trust plead guilty it will be a short hearing adjourned until a sentencing date in the next few months. This is a criminal prosecution. A guilty plea is pleading guilty to a crime. A crime that caused LB’s death.

Katrina Percy, then CEO, consistently distanced herself from the dire happenings she presided over between 2011-2016 with the apparent blessing of those who should know better.  Even after the jury at LB’s inquest found serious failings:

kp1

An ‘absolutely tragic failure’. I don’t know what these words mean. Other than it was nothing to do with me guv. But no one (no one) who should have, challenged them. For Percy, the unit and not her leadership was to blame. Before and during LB’s inquest, the argument was LB died of natural causes and it was my fault. The difficult mother and the pesky blog.

Sloven smeared here and they smeared there. Across the years. Embarrassing briefings outlining the wrongdoing of #JusticeforLB campaigners. Hacking, trolling and persecuting hapless staff members. And more. Blaming staff. Blaming everyone but themselves. There was no looking glass among the Sloven senior exec. Or Oxfordshire County Council and the Clinical Commissioning Group. No reflection whatsoever.

A tawdry soup of typically self-serving, smug, arrogant and sometimes nasty individuals. With inflated salaries and no understanding of what it is to be human.

Percy took her massive pay off, disappearing in to the early winter sunset last October. Waiting in the wings to re-launch herself as a leadership consultant on Linkedin.

Meanwhile, the new and remaining board members took it upon themselves to exonerate her in the recently published (and now suddenly removed from their website) 2016/7 annual review. She displayed neither “negligence or incompetence” apparently “during her time with the Trust to the extent that would warrant her dismissal”.  Despite two prosecutions underway.

Psst… board members – past and present – do you really not understand that patients have experienced serious harm or died under Percy’s leaky leadership?

Really?

Imagining a guilty plea

Just imagine. A guilty plea from a Trust who have forced us to fight every step of the beyond distressing way for accountability. Full pages of black redacted pages while other people leaked key quality reviews, briefings and more. Lies, more damn lies and non-disclosure across 51 months to us, to the coroner, and I assume to the police… Smears, delay and prevarication. Desperate attempts to prevent an Article 2 inquest and jury.

Valerie Murphy recently sharply shifted from a four year blanket denial of failings to partial admittance at her tribunal. Will Sloven, having steadfastly trawled through the darkest of dark practices, suddenly shift to a guilty plea?

If they plead guilty what does it mean? Can we can expect an apology for everything we’ve endured since LB died? The mother-blame shite. The staff witness statements with their ‘my relationship with Dr Ryan’ sections. The #fuckingpest commentary from the Berryman board member’s son. Will the abusive caller acknowledge I wasn’t a vindictive cow…?

Will there be recognition that we were collectively trying to get accountability for LB’s death?

Will Oxfordshire County Council and the Oxfordshire Clinical Commissioning Group hold up their hands and finally admit their role in commissioning and enabling crap care on their watch?

Will people/organisations actually take responsibility for LB’s death and their subsequent actions?

An unexpected call

On the bus to work this morning, my phone rang. It rarely rings. Sloven CEO, Julie Dawes. Ringing to update me about Monday. She wanted to run her statement by me, given we’ve been upset about earlier Sloven statements. Reflecting on our upset over previous statements is good. The statement she read out was an improvement on previous Sloven statements. More heartfelt and human.

It was missing any reference to the impact of Sloven’s actions on us since LB died though. What they forced us to endure. Walking through Cornmarket I tried to explain to Julie what it was like to listen to the Sloven barrister argue that drowning was a natural cause of death during LB’s inquest. Just one example of the slippery dishonesty the Trust demonstrated. I tried to explain how damaging this process has been.

Julie listened and said she’d try to reflect this in the statement. She said she wouldn’t attend the hearing on Monday ‘for various reasons’, she recognised how distressing Monday will be be and said if there was anything she could do to help I should get in touch. She reiterated this a couple of times. She asked if I was going to read out my witness impact statement on Monday. No, I said.

I thanked her, hung up and an hour or so later wondered why she, or the board chair, weren’t going to attend the hearing. It’s a criminal prosecution and most people don’t get to not attend ‘for various reasons’. If nothing else, it’s a simple sign of respect.

Given the earlier offer of ‘anything she could do…’ I thought I’d call her back to ask her. Number withheld. She could phone me, generating distress, but I couldn’t call her back.

I’m left wondering how much of the call this morning was driven by an underlying concern about reputation and managing comms. I mean if the Trust seriously wanted to demonstrate evidence of change the CEO or Board Chair would attend the hearing on Monday. And I wouldn’t be asked if I’m going to read out our victim impact statement.

The day after LB died Sloven wrote ‘Mother’s blog may cause a risk to the reputation of the organisation’. Over four long years later the only risk to this organisation remains themselves. And their actions.

 

Trivialising trauma

I revisited the letter from the Oxfordshire County Council commissioner this week. Christallbloodymighty. The 9 page letter sent to a disability rights activist a year or so after LB died and passed on to us just before his inquest in October 2015.

With increased incredulity, rage and distress, I googled her. Blimey. A more recent local news story. Mrs Cross of Oxford. Sent a free lesson at a now closed leisure centre. She seems more outraged by this than what happened to LB.

The first part of section 10 of the letter begins:

vmletter2

So much so fucking wrong.

  • The erasure of LB.
  • The diminishing of what happened to one ‘frustration’ (of many?)
  • The removal of agency; I’m out of control, irrational, hysterical.
  • Blaming the blog
  • Checking people are still alive [howl]
  • Blaming admin
  • Prioritising the absence of a particular colleague
  • Erasing LB.

Sending a letter to a patient who died a preventable death on your watch is more than ‘crass’, ‘upsetting’ or ‘unfortunate’.

Writing this letter and bleating about a random promotional freebie exercise class to a local paper screams so much so wrong with values.

Has (the audacity of) publicly documenting poor provision on ‘the blog’ and the light shone by #JusticeforLB turned senior public officials into monsters?

Or just exposed reams of rubbish wrapped up in ‘No one will ever know about or expose our inadequacies’ complacency parcels?

‘Upsetting’

I’m struck by the use of the word ‘upsetting’. In Josh Halliday’s Guardian piece about the tribunal, the MPTS responded

We are sorry to hear how upsetting Dr Ryan found the process of giving evidence to the tribunal.

An extraordinary trivialising of trauma.

‘Upsetting’. They heard how upsetting I found it? How? Through Josh’s questions? From MPTS staff present? From jibber jabber by the coffee machine?

From the clearly upset clerk who led me into that vicious den, removed me from it for a few minutes and then returned me to it?

Upsetting. What is ‘upsetting’?

LB missing his beloved Olympia Horse of the Year Show because of whooping cough. [We both had whooping cough, as did Fran’s son, James. I have a tear inducing fondness/nostalgia remembering those whooping cough weeks]. I was upset that LB missed the horse show.

Upset seems to relate to missing things. An event, a job, an exam pass, a promotion, a ticket, an opening, a closing, a dying plant, a building, a pub, a writer, an actor.

But it ain’t receiving a letter addressed to your dead son telling him how well the hospital he died in is going to care for him in the coming year.

Or being forced to answer a battery of nasty, credibility shredding non-questions for two hours in front of a tribunal panel and the clinician responsible for your child’s care.

As time drags on, space emerges to reflect more clearly on what happened. To make reflections, sense or no sense. There are clear similarities between the responses of the commissioner, Murphy, Percy and others.

Cut from the same cloth. Cloth woven with a thread that obliterates humanity, reflection and recognition of people and their families. No remorse, no genuine sorry, no regret, no nothing. Just blame. The mother, the blog, the frontline staff.  [Dip into the Katrina Percy reply for an extraordinary letter with 40 or so mentions of ‘I’, ‘me’ and ‘mine’ in just over two two pages.]

I’m wondering how far the stain of this model of ‘leadership’/senior NHS staff spreads. Are commissioners, learning disability psychiatrists, Trust CEO’s typically petty minded, self obsessed and ignorant of the lives and love of the families they are supposed to be serving? Is this unchecked or even encouraged by their peers/the culture of the senior tier?

And to those of you still monitoring this blog with a defamation lens. In case you still ain’t got it. Our beautiful boy died. He died.

L1029396