Category Archives: Campaign stuff

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

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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.

The victim statement, party and pond re-activity

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In May, the Health and Safety Executive asked if we wanted to write a Victim Personal Statement that would be shared with the judge in the prosecution against Sloven. They offered support to write it while acknowledging we probably wouldn’t need it. At the time I thought it would be a ‘minor task’. I mean I write, howl and rage on an almost daily basis.

Eight weeks later the statement remains unwritten. Well that’s not strictly true. I circulated a brief draft to Rich, Rosie, Will, Owen and Tom last week. Rosie fed back it was pretty rubbish and contrived (in less brutal words than these).

“Can’t you use an old blog post…?” she asked.

We said we’d talk about it this weekend because we’d all be together for Tom’s 18th party.

The party was on Friday night. It was pretty raucous with a lot of laughter, food and drink. Late evening with the dodgy disco light doing its thing, a Bowie track came on and the room of lively, loud and exuberant 18 year olds became a bit blurry. Rosie was there with a hug. The family grief morse code working as it seems to.

On Saturday morning after a brief party debrief and some groaning about sore heads we talked about the statement and I jotted down notes about what it should contain. This was largely a checklist of Sloven crap actions. We didn’t talk about the impact of Connor’s death on us which is what the statement is supposed to be about.

Later that day, attention turned to the disappeared pond in the front garden. Owen and I dragged the second of two monstrous plants out of the pond and left it sitting upright on the grass overnight. A solid, giant mass of roots, smelly black sludge and detritus with an enormous crown of green fronds that wouldn’t look out of place on a Doctor Who episode.

Rich dug the pond with the kids about 12 years ago now. It was a major operation based on serious pond research. Considerable depth in parts, different levels, shallow shelves for inhabitants to clamber in and out of, grey blankety stuff underneath the rubber sheeting and a couple of plants from an aquatic garden centre in Wheatley. A pond was born.

Life went on. Pond life flourished. We kept the weeds at bay for several years and children from the local primary school visited to see the frog spawn and tadpoles.

The two plants grew. And grew. Life took an unexpected turn. The pond disappeared under the foliage and was largely forgotten about. Apart from a hilarious dog sitting experience a year or so ago when Ned, a husky-cross, went for an unexpected stinky black cool down.

On Sunday morning, I was outside drinking coffee and studying the beached plant which was almost as tall as me and twice as wide. A woman stopped and said primly:

Ah. You’re attacking the jungle. Good! Have you just moved in?
Er, no. We’ve lived here for sixteen years…

She wandered off.

Owen and Tom set up camp in the afternoon for a couple of hours with music, borrowed footwear and gloves, an axe, spade and pair of shears, and the plant eventually disappeared into various bins around the neighbourhood. They later threw themselves into topping up the pond with a hose too short.

It’s incredibly hard to write a ‘personal victim statement’. The impact is unimaginable for each of us in different ways, at different times, in different spaces and with different people.

The fabric of family life continues to be brightly woven with people who didn’t meet LB. Partners, a baby due in November. Life goes on. My camera continues to capture delights. And they are delights.

The moments in between, and occasionally during, remain filled with an unresolvable ache that feels like a rock at the back of my throat or my chest being crushed. I don’t know if people’s hearts actually ache but for me it’s a throat/breathing thing which seems to have a direct line to tear production.

I just miss him.

We all do.

“Breathe before clicking…”

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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

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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.

 

 

Death, dosh and what the CQC knew

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An update to this post.

The CQC knew.

The ‘incident’ referred to here involves a man diagnosed with autism and epilepsy who drowned unsupervised in the bath in April 2016. He drowned. Alone, unsupervised in a bath.

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The CQC re-inspected the ‘home’, found various failings and referred to Elric Eiffert’s death as an ‘incident’. They found inadequate, or no, risk assessments around epilepsy:
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They took no formal action despite identifying risks to life that ended in death.

Instead asking the provider to:

send us a report that says what action they are going to take.

Send us a report…

The CQC knew.

At the same time they knew LB drowned in a hospital bath three years before. A death that should have been, by then, high profile enough to make any provider or NHS Trust pay close attention to bathing risks for [‘”vulnerable”‘] people diagnosed with epilepsy.

The CQC knew.

At the same time they were conducting an investigation into the way in which NHS Trusts respond to unexpected deaths. The irony. The wanton, careless, unjoining of dots that demand to be joined. That scream to be joined. How much money is wasted on this shite? While people continue to lead impoverished lives or worse?

The CQC knew.

Today #7daysofaction launched a campaign focusing on the profit made from the incarceration of learning disabled people in assessment and treatment units.

Dosh or death. Death and dosh.

The CQC knew someone had drowned in the bath when they inspected that place on April 28 2016.

Tribunal torture

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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:

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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.

 

A missing ‘apology’ in five parts

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Part I.

Michael Buchanan (who I suspect bereaved families across the country are developing serious love for) continues to fight the good fight of uncovering and shedding light on brutal NHS practices. He did a piece about the decision of the Health and Safety Executive (HSE) to prosecute Sloven for BBC News on Tuesday.

At one point, Huw Edwards, introducing the story, said:

“The Trust earlier apologised to the family…”

I nearly dropped my glass of cheeky and chilled vino.

“Eh? Did you hear from Sloven today, Rich?”
“No.”
“Neither did I. What apology?“

The next morning, a local journalist rang and mentioned the apology.

“We ain’t received an apology, mate.”

I looked on the Sloven website. Maybe they’d issued a statement. [Putting an apology in a statement is not the way to apologise to a family, mind. I was curious about where this ‘apology’ was].

Nothing.

I continued to hear about ‘the apology’ as the day wore on. With no sign of it. Then bingo. This, on twitter:

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Ah. The apology was part of a statement the Trust were sending to journalists. A fake apology extraordinaire.

Part II.

In the same way that the Trust response to LB’s death was to write and circulate a briefing document about my blog to protect their reputation, their response (and this needs to be read within the context that three board chairs, a CEO and a complete set of non-executive directors have now been replaced)  to the HSE decision was to tell the British public, via the press, that they have, once again, offered their ‘unreserved apologies’ to us.

Now Julie Dawes, and your merry band of (shit and/or remaining) executives, here’s the rub:  this is no apology. It is nothing resembling an apology. It is so much worse.

What you have done is:

  • compound the barbaric treatment you have relentlessly dished out to us (and many other families).
  • Make visible the insincere, formulaic and performative ingredients of an NHS ‘apology’.
  • demonstrate you have learned nothing despite saying you have.
  • treat us with further contempt and disrespect I didn’t think possible.
  • show us you remain incapable, either wilfully or otherwise, of understanding basic humanity and decency.

Part III.

The statement is pure spin. A closer look at the wording:

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The HSE has “informed the Trust of its intention to prosecute in relation…” [Prosecute who?] “Connor’s death whilst in our care…” [It could have happened to anyone, we just happened to be holding the parcel when the music stopped.] “Could have been prevented…” [Introducing uncertainty into the findings of the independent investigation and the inquest.] “We would like to…” [But we ain’t going to.] “Once again…” [We have apologised to this vexatious mother relentlessly.] “Offer our unreserved apologies…” [A prize for us to take with grateful hands.]  “To his family.” [Family for PR purposes, ‘the Mother’ for every strategic opportunity to stick the boot in.] “Continues to do everything it can…” [Apart from actually say sorry].

Part IV.

You didn’t get in touch with us to say sorry. You got in touch with the press.

Minutes after finding the ‘apology’ on twitter, I received an email from your administrator. On behalf of you and the Board Chair, Alan Yates, about meeting up with the group of families you have treated like utter crap.

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You can email me about a meeting (to benefit you) but you can’t say sorry.

You didn’t get in touch with us to say sorry. You got in touch with the press.

I find this unforgivable.

Part V.

Rich and I have felt pretty low since the HSE news. People have been saying it’s remarkable that the campaign has achieved so much. It is. Bryan, from My Life My Choice, earlier reminded me of the time I sat in his office a year or so ago, dejectedly saying we didn’t have a craphole chance of achieving our aims… particularly around making sure Sloven didn’t profit from the sale of the Slade House site and a prosecution against the Trust.

The trouble is, of course, LB remains dead; our beautiful son, brother, grandson, nephew, cousin and friend, is forever absent and, within a shifting family landscape, newer family members will never meet their quirky uncle LB, brother in law, second cousin or potential godfather. We know this. Any bereaved family knows this.

What your latest ‘unreserved’ non-apology beyond shiteness this week has shown, is that you have zip all understanding of this, and that you couldn’t give a flying fuck. You have been beaten into a corner by a remarkable, and unprecedented, collective brilliance, and you’ve learned nothing.

Still.

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The pigeon in the chimney

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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.

Branch, burial or crematorium…

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“Darling, I’m sorry but the undertaker wants to know if we want a burial or the crematorium…”

“I’m just filling in a HSIB Patient Safety Awareness form.”

“A what? What’s HSIB?”

“The Health Safety Investigation Branch… Some government thing.”

“We need to make  a decision. Apparently  the cemeteries are pretty full around here.”

“Sorry, I’m stuck on this question: Why do you think HSIB should investigate your incident?”

“What incident?”

“Jimmy’s death.”

“Christalmighty. He died for fucks sake.”

HSIB was launched this week. Led by Keith Conradi, an air safety expert and pilot, with over 40 years of experience. The new branch is allegedly independent despite being called a branch, based within NHS Improvement and funded by the Department of Health.

I’m sure Conradi is an ace guy. I’m sure he knows his air safety stuff. Patient deaths and bereaved families?  Not so sure. The ‘its’ and ”relatives of incidents’ on the HSIB website suggest not.

The gig is that HSIB will investigate 30 deaths a year using a Human Factors approach. There is a set of criteria for selecting these deaths; outcome impact, systemic risk and learning potential. Your daughter, father, brother, sister, mother has become a learning tool and the bigger the potential learning from their death, the more chance they have of making the cut.

If you understand the various hoops on the website and get through them, you eventually (after two pages with an identical ‘get started’ button)  reach a link to the Patient Safety Awareness Form. The potential gold ticket. This kicks off by asking:

When did the problem you want to share with us happen?
I kid you not. The problem... The incident. Relatives of the incident. Human Factors bods take the non-pursuit of blame to a level that doesn’t translate well into health care. Reducing death to ‘a problem’ will probably send most bereaved families who have got this far into further pieces. If they limp through to the final page of the form, they are expected to produce a coherent justification as to why the death of their loved one reaches the criteria for investigation.
I don’t know. There is something different about approaches to safety in the airline industry and safety in the NHS. Dragging Human Factors from the former to the latter (without some reflection, understanding, empathy and commitment to adapt the process to the very different context) clearly necessitates an erasure of the human and focus on nothing but systems. But health care is necessarily messy, interactive and drenched in human. It involves patients who die in a many different ways, at different times. In the airline industry I assume (please tell me if I’m wrong) that a plane crash generates an instant grouping of deceased passengers, and their relatives, who have some shared experience of this catastrophic event or happening.
On twitter tonight I was introduced to the concept of “second harm”. This is:
Blimey. Second harm. This is so important (and makes me want to scrowl given the battering we, and so many other families, have experienced because our beyond loved children, parents, sisters or brothers died in the ‘care’ of the NHS).
The information on the new HSIB site is offensively phrased, not accessible and the process of ‘referring incidents’ is exclusionary; it assumes particular levels of understanding, articulation and engagement. And, as importantly, ignores grief and humanity.
It has, in short, considerable potential generate more second harm. Classy stuff.
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