The afternoon before the hearing

 

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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.

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Imagining a guilty plea

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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:

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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:

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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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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.

 

 

 

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.

 

 

 

 

 

 

 

 

“Breathe before clicking…”

Three possibly related developments in the last week or so. [One] The Sloven annual report published last week included a paragraph about the ex-CEO and her pay off:

‘Independent capability reviews’ had determined Percy was fit to lead. Blimey. That’s  interesting. What do these reviews say?

Well, a capability review was carried out by YSC for a cheeky £116k excluding VAT last year. A report that has never seen the public light of day despite FOI requests by ex-governor Peter Bell. It apparently gave the board a clean bill of health in the summer of 2016.

One year later, not one executive or non-executive director remains in post.

Now I ain’t no mover or groover in senior NHS circles [cue the eye leaking emoji] but I can’t help thinking that purging a Trust board of every executive and non-executive director is a pretty serious move.

Percy is apparently exonerated by this [secret] capability review while two prosecutions for failings under her watch are pending. Just extraordinary. I mean I can only imagine/hope one prosecution against a Trust is a pretty serious and rare gig. While two…?

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In the same week, I received an email from a journalist scamp with a warning to breathe before clicking. [Two] Percy is back and touting for business  with some toe curling claims. These include inspirational and visionary leadership, creating an open, accessible and energised culture, and successfully delivering a major acquisition of services.

[Three] As the last few Sloven staff transfer over to Oxford Health or limp back to Hampshire, the door is finally closed on the grim and grotesque acquisition process Percy led back in 2012. I think it’s fair and reasonable to say that using the word ‘successful’ in relation to this process and the devastation that followed, is one of those stretches that should never have been a fleeting thought in a careless moment, let alone typed into a Linkedin profile.

I want to flag up here that I have no personal vendetta against Percy. I have no interest in her as an individual outside of what she, her actions and the ‘official responses’ to her actions reveal about the murky of murkiest corners of the NHS.

There are, clearly, serious questions generated by these latest unfoldings which should be of concern to all of us.

Not least, why do the various NHS layers – Jeremy Hunt, the Department of Health, NHS England, NHS Improvement, the CCGs, the Sloven board – allow, enable or facilitate these narratives of delusion and erasure to stand unchallenged, and the continued channelling of scarce dosh into insalubrious pockets and pots?

UPDATE: The PriceWaterhouseCooper audit clearly summarises the failings the bulk of which occurred under Ms Percy’s leadership. Deary, deary me… Something is Stinky Pete around here.

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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.

 

The pigeon in the chimney

Nearly two weeks ago now, we had a pigeon in our chimney, in the bedroom. It took ages to come down, bringing years worth of chimney shite with it. The fireplace has one of LB’s bus pictures in front of it and once it landed, the pigeon just calmly poked it’s head round the side of it. Rich was ready with a cloth to catch it and release it out of the window. It did a massive loop around the houses then flew away.

Ten minutes later, the Health and Safety Executive rang. They said they will be prosecuting Sloven under Section 3 of the Health and Safety Act. Tears. The following day, Fran rang. She had been at a meeting with Oxford Health and commissioners where it was confirmed that, after quite a battle, the Slade House site would remain with Oxford Health. She said there were tears. More tears.

Jim Mackey, NHS Improvement, told Andrew Smith, MP:

“Southern Health will not receive a cash consideration and will record a non-operating ‘loss’ item in its accounts.”

I think that’s pretty much it now. Other than a shindig at the Oxford Magistrates court when the prosecution is held.

Thank you. I think we all did a bloody good job, as Connor would totally expect.