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:

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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.

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Six days in Asturias

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

Thursday evening

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

She asked what I did for a job. 

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

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

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

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

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

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

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Friday

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

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

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

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

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Saturday

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

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

Sunday

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

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

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

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

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

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

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Monday

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

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

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Followed by dog and people watching.

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

Tuesday

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

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

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

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

A levels, love and waiting for the tribunal

A ‘day off’ from the GMC tribunal which continued in private today. Day three of deliberations to determine the facts.

A level day.  Early morning jitters (and humour) from Tom:
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He stormed it. We could not be prouder.

Funnily enough, a photo of Tom and Owen from 2012 popped up on Facebook. A day out in London months before Tom’s childhood was to change irrevocably. Owen, then 17, turned turned 18 the day before LB died. [I know].

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A friend messaged earlier saying congratulations and Tom has ‘done his part in saying ‘fuck you’ to the system and not allowing it to control’. Rosie, Will and Owen have also done their part in doing this. They have, in addition to the death of their beyond loved brother, endured home becoming a site of activism, anger, rage, despair, distraction, tears and more tears.

About a year ago now, at some particularly low point, Rich and I decided during an unusual weekend home alone that we would chuck in the towel on the fighting front. It was too much. It wasn’t fair on the kids. We were trying to climb a super smooth glass NHS mountain coated with a combo of pig grease, melted butter and olive oil.

We told Tom on his return expecting relief. A levels looming and all. He was shocked we’d even consider it. The love, concern, steadfast and unquestioning support and humour they have demonstrated over the last four years, mirrored in the actions and support of their partners and friends, is something we treasure beyond words.

These last few weeks have been particularly unpleasant. We’ve been shoehorned into even more extreme spaces by the careless fuckwaddery actions of the Nursing and Midwifery Council sharing our personal details and Mr P’s brutal and unnecessary cross-examination last Tuesday.

Wilful attempts to discredit without any relevance to the allegations under examination.

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On Wednesday we waited for the tribunal to begin again in public. A inhumane waiting even without the unchecked, salacious and unnecessary savaging. I lay on the settee, under my Routemaster blanket, refreshing twitter repeatedly. Bess dozed on the chair opposite. I took a pic of her on my ipad and tweeted it.

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#Waitingforthetribunal

This generated an unexpected and hilariously heartwarming set of photos; the pets of twitter. Waiting in solidarity for the tribunal. Including a plant (a groot?) which I can’t find now (sorry).

Names, spaces, commentary and love.

I’ve written about pets and health, we’re currently putting together a funding proposal with vet colleagues to further explore this area and yet I didn’t expect to find such solace in the sharing of photos of much loved animals on twitter. It made me chuckle. It was grounding. It was kind of reassuring.

Yep, I thought. These non humans could teach us a lesson or ten. If we would only start listening.

Late morning tomorrow (Friday) the panel are due to announce their determination on the facts (whether the doctor is guilty of the remaining charges she has not admitted to). The tribunal will then be rescheduled to continue at some point in the future.

We will continue waiting. Four years and six weeks on.

Being (in)sane in insane places… in four parts

Part I

Waiting for the GMC tribunal to come back from ‘in camera’ (secret) discussion today. It’s impossible to do anything constructive. Wait. Mope about in bed. Play Candycrush. Clean the floor badly. Answer a few work emails. Pace around the house. Play Candycrush. Poke at weeds for a bit. Mope. Back to bed. Wait.

Agitate.

Part II

We’ve waited four years. But the events of last week make it impossible to concentrate. The cross-examination brutality, the revelation that this blog was causing anxiety among consultants before LB was admitted to the unit and other outlandish arguments by the doctor’s barrister, RP.

Including his bizarre claim he had no computer access to produce submissions for the Friday morning. In central Manchester… sitting next to a colleague with a laptop.

There was incredulity and practical info on twitter.

The next morning RP circulated a set of handwritten bullet points ‘not in narrative form’:

He later argued:

Not all of us are au fait with narrative… You have to find a computer first and then go into free text…

Oh my. Did he handwrite a set of bullet points (a day or so after deftly destroying me as a reliable witness) to demonstrate the point that computers aren’t necessary to do a good job as a consultant?

The day ended with this comment:

Part III

The GMC are keeping us informed about the timetable and process of this hideous process with thoughtfulness and sensitivity.

This is where we are at:

The panel are currently reviewing and considering the evidence given last week and need to agree the position on each charge that has not already been admitted and draft a full decision referring to the evidence, setting out their reasoning for each of the charges.  
 
The hearing will reconvene in public and the determination will be read out. Parties may need time to fully consider the determination then the hearing will move to the second stage. Further evidence can be called and submissions will be made on behalf of the GMC and the doctor in relation to whether the doctor is impaired. At this stage, the Tribunal meet alone again and need to make a decision on two matters: 1. whether the facts found proved are serious misconduct (the meaning of which is set out in various case law) and 2. if so, whether the doctor is impaired by reason of her misconduct.  It is not known how long it will take for the Tribunal to make this decision.
 
Depending on the Tribunal’s determination on impairment, the panel will consider the position of sanction. This would involve further submissions by both parties and another determination by the Tribunal.
Apparently the panel are unlikely to give a determination on the facts tomorrow.  The determination (the next step before the next stage) will likely now happen on Thursday. Coinciding with Tom’s A level results.
Part IV
This hearing has dominated the last few months for us. The Nursing and Midwifery Council (NMC) data sharing breach-too-far is bubbling on in the background. We’re less than four weeks from the Health and Safety Executive prosecution. We managed to polish off the personal impact statement yesterday, thank fuck. In less than a page.

You should include the fact you haven’t had a bath since LB died.” said Rosie. “And you loved them. I remember when we were little and we used to come in and chat to you. Sitting on the toilet…”

My definition of crap has taken such a battering I no longer have words for what we’re enduring.

We’ve been pushed into such an extreme space now that daily interaction with people is becoming difficult. Throwaway conversations in the street about the weather, summer holidays, dogs are hard to engage with. You can’t lay the shit storm we’ve been subjected to on any passerby or acquaintance. At the same time, saying, vacuously “Yeah, fine” is harder to say.

This led me to think about another layer to the campaign and social media activity; the sharing of rage, distress, incredulity and bafflement. The discussion and commentary. We know we wouldn’t have got ‘this far’ without social media. I hadn’t thought about how we would have personally been derailed months or years ago if we were experiencing this in isolation.

An hour into Mr P’s interrogation last Tuesday I was doubting myself.

It’s harder to doubt when so many others express sense, offer expertise (in any shape or form) and solidarity. And genuinely care.

 

‘I want to ask you a little about your blog…’

This blog has again loomed large. It did at LB’s inquest and again this week at the ongoing GMC tribunal. Dr Murphy’s respective barristers both presented it as a transgressive space/action that somehow underpinned or fed into what unfolded. It was a malign catalyst for something (I’m not sure what either barrister was trying to argue other than the blog damaged the relationship between some consultant psychiatrists and a patient’s mother).

How social media ‘feedback’ is ‘used’ by health and social care is the subject of considerable research, some of which is happening in our research group. A colleague has been interviewing people who document their health experiences online to explore why they do so.

When I started writing the blog back in May 2011 ‘online patient feedback’ was not a twinkle in my eye and possibly wasn’t even a thing. I wanted to capture the funny stuff that happened in an online diary. I didn’t expect it would be read beyond close family and friends (or even by them). In fact it became quite widely read and a few hundred people started to follow it. The fun focus sadly disappeared towards the end of 2012 and it became an account of trying and failing to get support for LB and subsequently the 107 days he spent in the unit.

This week the blog questions unfolded like this [RP is Dr Murphy’s barrister] :

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This was ground already thrashed out during LB’s inquest nearly two years ago now [VM is Dr Murphy talking about a community psychiatrist].

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A different view was presented by the Band 6 nurse during his evidence:

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I was told a few years ago that a STATT staff member was warned about LB’s imminent admittance four days before he was admitted. I thought this must somehow be wrong. I mean we didn’t know the unit existed until the day we took him there. It was almost in the realm of Mulder and Scully terrain to think that discussions were going on, without us, about a specialist unit we were to find out about from a mate on March 19th.

This week it became apparent that Dr Murphy and other consultant psychiatrists had discussed LB’s potential admittance to STATT (unrecorded discussion) in the weeks before it happened. I spoke with one of the consultants from back in the day earlier today and it turns out that my blog was known about before LB was admitted to STATT. My blog (and my aggression or forthright communication depending on where you sit) generated strong emotions, anxiety, irritation and distrust. There was, as JC said ‘an irrational fear of the blog’.

Social media activity like this was unprecedented and no one who was bothered about it knew how to deal with it. Appeals were made to senior Oxfordshire County Council (OCC) levels to somehow close it down. These were robustly rebutted by a redacted person who, like JC above, suggested that it created an opportunity for engagement.

I appreciate the frank discussion which happened with no notice today. I was also shocked that consultants could be so discommoded by the blogging of a parent, that none of them were able to read, discuss or engage with what was being written in a constructive way. I’d been carefully documenting the complete lack of health and social care support for an increasingly anxious and unwell young man for three or four months by then, or possibly longer.  This is remarkably similar to the Blog Briefing Sloven circulated the day after LB died in which concern focused solely on reputation and professional pride.

I wonder if my writing style somehow added to the fear and distrust. The irreverence and liberal swearing. If I had written a more conventional and ‘polite’ account would it have been better received? I suspect not given the consultant I spoke with denied actually reading it. This was irrational fear.

I’m baffled that not one of these consultants was able to speak to me about their concerns. (Interesting we could have an open discussion today… I assume the toxic mother label is finally shifting as Sloven failings are finally recognised.) I’m deeply horrified we were oblivious to this consternation about the blog when we admitted LB. As the GMC argued this morning, it was Dr Murphy’s responsibility to talk to me about LB’s treatment. It was also the duty of these consultants, surely, to share their concerns with me about my blog?

I suggested to the consultant that the extreme response at the time was generated by the lack of actual challenge to medics by patients or families who are too easily silenced in different ways. The blog created a space of challenge but instead of being used to improve practice, or even engage with and consider the limitations of practice, it was despised and I suspect had an impact on how LB was treated. The veneer of professionalism can be shown to be very thin when ‘transgressional’ activity takes place.

There is some irony that #JusticeforLB is now used in health and social care learning and teaching. The blog also created an unusual contemporaneous record of what happened. The power of the posts that reviled or worried staff before LB died formed part of the evidence at his inquest. The typically disempowered position family members occupy when their testimony is dismissed as ‘anecdote’ differed here. Lowly families aren’t allowed the defence of ‘I did it in my head’ like Dr Murphy has used this week at the tribunal but I had written it down.

There is much to think about, discuss and chew over here in some ways. In other ways there ain’t. Health and social care professionals should be engaging with patients and families in different ways, at different times and in different spaces. They should be encouraging comment and feedback. I hope our experience is already historical and within the ivory tower of unassailable medical practice medics are learning to be more humble and take public accounts of patient experiences as opportunities to better understand the consequences of their actions, or non-actions, and the interaction between the various individuals involved. These accounts should be treasured not vilified.

 

 

 

Writing trauma

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I want to write this post as close as possible to giving evidence at the General Medical Council (GMC) tribunal investigating Dr Murphy’s fitness to practice. To capture the essence and rawness of the experience.

The unnecessary and unchecked brutality. And destruction.

It’s a pretty and long detailed account. That is writing trauma.

[I also acknowledge our GMC solicitor and colleagues who have done what they can to try to ease this journey.]

Weeks of dread led to Rich and I setting off to Manchester (earlier than planned) by train on Monday. Summer holiday travel. Young kids and families. Excitement and crisps.

Our summer has been blighted by the timing of this tribunal.

Rosie decided to come too after I was unable to speak to her on the phone on Sunday evening (after writing this post). I simply couldn’t speak.

Stirring up the horror of what happened four years ago now is, as you’d expect, deeply distressing. LB died. He died. The shite we accepted or were made to endure back in the day is harrowing. And increasingly baffling as we grow further from the cosh of typical learning disability offerings.

Following the @JusticeforLBGMC twitter feed on the train we were surprised when Dr Murphy accepted 28-30 of the allegations raised. Not the Dr Murphy we’d so far come across. With so few allegations left to deal with our thoughts turned to the apology I would probably receive when giving evidence the next day. An apology four years in the making. But an apology.

The next morning, we gathered in the hotel minutes from where the tribunal was being held. George and Charlotte left for the tribunal just before 9.30am. I switched my internet off. Witnesses are not allowed to hear witness evidence and LB’s neurologist was due to give evidence before me. Rich, Rosie and I sat around. Anxious and agitated. Rosie followed the twitter feed passing her phone to Rich every so often. It’s fine, they said. Looking grim. The GMC solicitor called to say the 10.30am start for my evidence was looking on time.

Rich answered the phone. I was on the toilet. Again.

We walked up the road. A couple of men with television cameras at their feet were outside the building chatting. On the 7th floor, we were shown to an inevitably bleak witness room. The GMC solicitor and barrister came in and described what to expect.

We waited. There was an unexpected delay of about 45 minutes as the tribunal panel questioned the first witness.

We flicked through photos of LB on Rosie’s phone.

 

“So cute…”

“Look at that baguette he’s holding!” [sob]

IMG_2810Then it was time. The clerk took us into the tribunal room (left). Rich and Rosie sat in the public bit at the back while I was taken to a large desk facing the tribunal panel. It had a white arch level file with over 1000 pages of documentation, glass of water and microphone.  Before sitting I had to read an oath from a laminated coloured sheet. I couldn’t read it without crying. I couldn’t at LB’s inquest. I don’t know why. Maybe it’s such a stark reminder of the horror that is this (public sector generated) experience and the layers of utter shite that have been woven through it since.

The panel chair introduced the people around the table. The GMC barrister checked I’d signed and re-read my two statements which were in the front of the white file. Then it was over to Dr Murphy’s barrister, Mr P.

There was no apology. Our naive optimism was instantly crushed. Mr P asked me to turn to page x in the file and began a meticulous questioning that involved turning backwards and forwards between my two statements in the front of the file and medical records 700 or so pages towards the back of it.

He had a skimpy pile of the relevant pages laid out in front of him. He didn’t have to lob wedges of 1000+ pages backwards and forwards over a metal lever arch file bridge and leaf through numerous pages to find the relevant page, and section of text.

Briefly scanning through pages of painful words about LB’s horrific last few months.

His lightness of documentation and organisation of the ‘cross-examination’ meant he effortlessly lined up question after question after question. I felt I was being repeatedly sliced open with such a sharp knife there was no trace left on the blade.

“If you could turn to page x… Dr J is summarising his thoughts here, in this paragraph. Did he share them with you?”

“He made a phone call to Dr M. Can you remember how long that call lasted?”

“Turning back to page y. Do you recall Dr Murphy introducing herself in this meeting? In your statement on page j, you said…”

“If you could turn to page z of your statement. CTM meetings were held every Monday, you describe them as 10min meetings. Dr Murphy recalls the meetings being much longer…”

“Turning to page a, another meeting you did not attend, the notes state…”

A masterclass in something.

Over time, photos can become defining memories of particular events as the broader context fades away. Under Mr P’s questioning, on the 7th floor of that imposing building on Oxford Street, Manchester, LB’s medical notes became photo-like. It became impossible to think about and answer the questions that kept coming. To think beyond the words I was being directed to on different pages at different ends of the lever arch file. My heart started to thud so hard and erratically I thought it would knock me off the chair. Black edges creeping around my vision made it harder to find or read the notes. I became fearful of fainting and began to doubt my ability to answer questions truthfully.

“I don’t remember.” “I’m not sure.” “I just don’t know…”

Mr P continued asking questions. Apparently at ease with an approach that unsettles,  distracts and confuses. Seemingly oblivious to my distress. No one intervened. I had no representation.

“On page j of your statement you describe Dr M as dismissive, arrogant and distant. Do you think that’s a fair assessment of Dr M’s conduct or is it coloured by what happened?”

“It might be coloured by what happened but I was expecting a knight in shining armour from a lead consultant who would do something.”

“It’s very upsetting for Dr Murphy to hear any patients’ relative describe her as such…”

Something stopped. An almost powerpoint presentation (and I fucking hate powerpoint) started to run through my mind. LB holding a giant piece of baguette on holiday. The indescribable pain of his death. What we’ve endured over the past four years. Dr Murphy suddenly admitting 30 odd failures in LB’s care a day earlier. Rich and Rosie sitting behind me listening to this inhumane and barbaric form of questioning with no recourse to action.

I gripped the edge of the table and asked the panel chair for a break.

The clerk took me to a room on the other side of the building. By this time, I was sobbing and repeatedly asking “How could they do this?” without expecting an answer. She was very kind but couldn’t ‘talk’ to me. I was left on my own with a glass of water and tissues for five minutes. There are no words for how I felt. They don’t exist.

Walking back towards the tribunal room with the clerk the blackness came back and I briefly stumbled. ‘Do not pass out’ I steeled myself. The thought of delaying this foul process was too awful to imagine. There was a delay before going back into the room as the tribunal were deliberating something. I stood in a section of the corridor with Dr Murphy and her legal team. Rich, Rosie and other members of the public were waiting in a different section of the corridor. I stared out of the window. Half seeing the Manchester skyline, Oxford Road rail station. The clock tower. Grey and threatening skies.

We were allowed back in the room.

Mr P started:

“I was asking about personality side of things and dynamics and wanted to ask you a little about your blog…”

And so it went on. The same questions that had been asked, answered and dismissed during LB’s inquest. Pages to manoeuvre. Notes to look at. Mr P didn’t miss a beat.

After two hours it was finally over. We left the building ignoring the television cameras outside and walked back to the hotel.

I can’t make any sense of experiencing harm in a medical tribunal. One held to explore the fitness to practice of our son’s responsible clinician. How on earth can this be possible and apparently acceptable?

And Mr P? You have taken crapshite to a new low.

Postscript: After Valerie Murphy spent the entire day giving evidence (well worth a catch up at @JusticeforLBGMC with a blood pressure warning for being chillingly shit) it became clear my evidence contributed nothing to the defence case. Nothing whatsoever. It was the equivalent of a kicking down a dark alley by a gang of thugs.

Grotesque.

 

 

A pre-tribunal Sunday in August

 

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The day before Dr M’s GMC tribunal starts. Weeks of dread, horror and such deep sadness. A chunk of today listening to a Keane playlist. And re-reading the various tribunal documentation. (Regular readers will know that Keane were LB’s favourite band for about two years before he moved on to drum and base.) I thought about how six years or so ago now he would probably have been lazing out in the garden if it was sunny, listening to Walnut Tree and the like. Over and over and over again. And then again.

My mind wandered into an unusual space earlier; an imagining space. Imagining LB had received good care at the unit. Imagining that he had been treated with care, respect and professionalism…

Rich and I spent several hours in A&E two weeks ago after I had a couple of dodgy breathing episodes over a few days. The care, attention and kindness demonstrated by everyone we came across in the John Radcliffe Emergency Department was exemplary. Around 2pm on the Sunday, watching the men’s Wimbledon final in the waiting room and waiting for various test results,  I said to Rich

Not being funny but I feel an unusually peaceful sense of wellbeing right now…

It was beyond comforting to be looked after by dedicated professionals after four years of brutal treatment. Early evening the consultant said it was anxiety, my GP would be in touch to discuss and we could go home. I’d said hours earlier that I was under immense stress. Information that was parked by staff who spent the day carefully testing for heart related and other nasties regardless.

This was, arguably an anti ‘diagnostic overshadowing’ experience. I don’t like this term but it’s the idea that health/social care bods can’t see beyond the label of learning disability or autism to offer effective care. Rich last week said it’s just neglect really and my A&E experience supports that. Even with an obvious explanation, staff did a thorough investigation.

Some of the detail that may unfold over the next two weeks of the hearing will be bewildering or shocking to many people, health professionals and others. Or it should be. Perhaps some medics will switch off when they hear the learning disability label. Thinking explicitly or implicitly that LB’s death wasn’t ‘premature’. Certain people die early… weak stock and all that.

There is no reason under the stars, planets and to the moon and back that LB and I received such different NHS care. I was treated with respect, care and a deep level of professionalism in a space that people typically pass through in a few hours. I pitched up out of the blue. LB, with a ‘footprint’ (I dunno what else to call it) that should have screamed serious attention and care is needed, was treated with contempt on admittance to the unit, restrained, sectioned and then pretty much ignored for 107 days until he died.

I type these words with a jangling, raging, fucking maelstrom of incredulity…

George Julian will attend the two week Manchester based GMC hearing daily and live-tweet the proceedings. There has been a remarkable response to a funding call to cover her expenses to do this; recognition that making these processes transparent is a public service. It ain’t an easy gig to live tweet anything, let alone complex legal cases and the LB’s inquest twitter feed she produced remains a remarkable example of live and open justice.

For us, as a family, we could not be more appreciative that George is prepared to take on this task with a professionalism too often lacking. To know that we don’t need to ‘police’ this tribunal; to be confident that the process will unfold transparently with commentary from a diverse number of people. This is simply priceless.

 

 

 

 

 

 

 

 

The bleat action continuum

Over two years ago now I was writing about ground elder and the #LBBill. I’ve moved into the front garden recently, leaving the elder battle in kind of easy truce [I failed]. The front garden has tall ‘weeds’ with yellow tops which grow to middling head height every summer, leaving columns of snappable woody stems in the autumn.

Turns out these fuckers are worse than the ground elder. They have incredibly dense interconnected knotted lumps of a main root with shaggy swathes of stringy roots. Each one involves a hefty dig, more digging and almost full body wrestle to remove it from the ground. I can almost hear the earth breathing as they are lobbed into the brown bin.

Today we were due to hear the outcome of the Nursing and Midwifery Council (NMC) investigation into how they could possibly have shared personal details to the six nurses under investigation and their counsel.

Given the General Medical Council (GMC)* tribunal into Dr M’s fitness to practice starts on Monday in Manchester for two weeks and Rich and I are on extreme stress settings, I naively hoped that the NMC would be in touch early on in the day to limit the stress. We’ve had way too many 5-5.30pm Friday disclosures over the last four years.

The day dragged on. I punctuated work tasks with patches of root wrestling. Still nothing from the NMC. By 4pm I drifted onto twitter. It was impossible to concentrate. There was some discussion around what time we might expect to hear from the NMC and recognition that the Friday afternoon ‘disclosure dump’ is clearly modus operandi for public sector organisations with no heart or feeling. I resorted to tweeting the CEO about the cruelty of this delay.

The email pinged into my inbox. At the very outer edges of the allocated time.

Tip: Because you say an investigation is going to take x amount of days doesn’t mean the investigation has to take x amount of days. Focusing more attention on a complete balls-up to reduce the time the investigation takes and the accompanying stress for the family is the least you can do in a situation like this. Particularly if

  1. you had an additional 15 days between discovering the data breach and bothering to contact one of the four people affected.
  2. you have previously and publicly spent £250k redacting documents requested by another bereaved family in a breathtaking self protective act.

One of the numerous shite practices we’ve noticed over the past four years is the tendency for senior public sector staff to bleat ‘It was not our intention to do x, y or z’ despite doing it. Or ‘On reflection we should have done…’ when they didn’t.

What this really means is senior staff act with intent (and speed) when it involves their (organisational or own) reputation/skin and don’t when it doesn’t. The briefing on my blog circulated the day after LB died is an exemplar of this bleat action continuum.

The NMC letter outlined how sorting out the return of our personal data (first shared in November 2016) is shambolic. A mix of returned data, alleged destruction of data and outstanding information about copies made.

About as unreassuring as you could get.

And then, in a move not worthy of being written into a cheesy, made for tv movie, it turns out that after discovering the data breach in July 2017, they re- shared my personal details with three of the nurses. Yes, you read that correctly. Re-shared. Nine months after first carelessly tossing them around. But only [bleat] the same information (minus my bank details) to the same people…

There is nothing like heavy handed, dosh drenched redaction when it ain’t your reputation under threat. Nope. Nothing like it.

Fuckers.

*The GMC have been exemplary in the approach to this: clear, detailed information, communication and organisation.

A breach too far

I’ve spent the day since talking to the Nursing and Midwifery Council (NMC) at lunchtime shaking uncontrollably, swearing and raging, laying on the settee in silent tears and, for the last two hours, drinking beer and now wine. ‘Luckily’ we are on annual leave so I can do all these things.

I think it’s fair to say that since Connor died we have been treated in a remarkably consistent and appalling way. We’ve had no equivalent of a police liaison officer to help us pick our way through the wreckage of his death and our shattered lives. We’ve had no support, kindness or understanding from any of the organisations implicated in his death (the Trust, the county council, the clinical commissioning group, NHS England or NHS Improvement).

Instead we’ve been smeared, pissed and shat on in extraordinary ways.

In addition, we’ve been expected to attend numerous meetings with the ‘great’, good and mediocre to try to improve practice. All at our own expense, all in our own time and not one single meeting held in Oxford where we live. We have been chewed over, sucked dry and spat out.

I think we’ve behaved pretty well in the circumstances. I’ve only started using the word cunt regularly in the last few months or so. It trips off my tongue now. Rich has stormed out of the odd meeting or raged down the phone to the odd Chief Inspector or two, but in the circumstances small fry really.

We’re a family, like so many others, who have experienced the worst possible happening; the preventable and brutal death of a beyond beloved son, brother, grandson, nephew, cousin and friend within the hallowed walls of the NHS. A young man with his whole life ahead of him, discounted as human because he was labelled as learning disabled.

We’ve sucked up delay after delay, obstruction, deceit, denial and mother-blame on a scale that is more than enough to generate long term mental ill health. We’ve battled on with remarkable support from many people. Dealing with the death of a child is horrific. Dealing with the accompanying shite and recriminations that come with the bullying, defensive and self obsessed practices of public sector organisations (and individuals therein) which have failed, is simply brutal.

Today I was told, after an opening filler of no substance whatsoever, that the NMC had ‘accidentally’ shared our personal details with the six nurses under investigation back in November 2016.

There was no whiff of an apology until I asked for it.

A couple of hours later, when I was able to speak, I found out that this data breach involves:

Our home address, my mobile number, email and bank details, my mum’s name and phone number, Connor’s date of birth, NHS number and his dad’s name and phone number.

 

The redaction policy of redacting personal information had been ignored when it came to our personal information. There were other redactions. From this, we can only infer that we, like Connor, were discounted as human. How else can you redact some personal information and not others?

This apparently came to light on June 26 2017. Over two weeks ago. Five out of the six nursing staff (or their counsel) were contacted by email on Monday with a request to destroy or return the disc containing this information. Four out of the five have apparently acknowledged receipt of the email with no accompanying action. The sixth staff member who only has a postal address hasn’t been contacted yet. The NMC haven’t bothered sending a letter.

Our personal information is still out there live and kicking.

The senior member of the fitness to practice team I spoke to after the first call spouted root cause analysis and learning shite after a delay of an hour between calls while she bothered to get the relevant information to hand to answer my questions.

I can’t articulate this violation other than in tears. A flood. The level of contempt and disrespect is generating weeping in a way I thought we’d kind of crawled beyond. A return to the Sooty tears. Almost worse in some ways because it is so fucking wanton.

The basics here – like don’t leave a patient with epilepsy to bath alone in a locked room and redact the personal details of the dead patient and their family when sharing information –  don’t need investigation or root cause analysis.

And the tears kick in again.

 

 

Tribunal torture

This post builds on Five tribunals and a dress code. Sadly.  A few weeks ago I had a three hour (yes, three hour) interview with General Medical Council lawyers. This grilling (they warned me in advance it would be) involved a barrage of questions in tortuous, micro detail.

It was grim. Documentation (and this blog) had been mined for any inconsistencies.

As I’ve banged on before, staff have legal representation at these tribunals and these barristers can ask anything they want of witnesses. Witnesses (including bereaved families) are not allowed representation. During the interrogation, in a hotel meeting room in North Oxford, I scrawled this:

IMG_2704

I went home afterwards, instead of to the work meeting I was supposed to attend.

This morning the Nursing and Midwifery Council (NMC) called to update me on the six nursing tribunals due to be held this summer/autumn. A preliminary meeting was held last week apparently and the independent chair agreed to:

  1. Lump the tribunals together to make one long one hearing.
  2. Postpone this until May 2018.

Apparently the NMC opposed this delay but staff representatives disagreed with a possible January 2018 date.

So, another year and another tribunal to dread. The brutality of forcing us to revisit what happened for at least another 12 months.

We had no one at the meeting to draw to the chair’s attention the utter inhumanity intricately woven into this process.

We simply don’t count.