The 12 days…

[Written on 16.7.15]

Two years ago today we buried LB.  On a baking hot July day.

He went from being a funny and beyond loved dude to an anonymous inmate in an ATU in the blink of an eye really. Pretty much stripped of his family, everything he understood and recognised, and then his life.

12 days after being found ‘unconscious’ in the bath in the ‘specialist unit’ (that had been taken over by Southern Health NHS Foundation Trust some months earlier), he was buried in a Routemaster bus coffin in a woodland grave. Aged 18 and a half.

I find it hard to think back to that time. Those spaces. The 12 days… The 107 days before. The two years since. Spaces of indescribable pain and horror.

I still remember LB though. Outside of all the shite. I realised this yesterday when I imagined him on holiday with us. I could still see him, hear him and feel his presence strongly. His (constant) commentary, facial expressions, enjoyment, participation and humour. I could see him, sitting cross-legged on the beach, sifting sand through one hand, eyes half closed, basking in the sun like a contented cat.

I wondered about this. On a windswept beach in Tenerife. One of my (many) fears was that I’d forget. That he’d lose shape, substance, being in time. His brutal and unexpected death would obliterate him. But it hasn’t.

What actually happens when your child dies a preventable death in an NHS hospital?

[Written 21.6.15]

After listening to Scott Morrish describe his experiences of what happened after his young son, Sam, died a preventable death in hospital (a depressingly, depressingly familiar account), I thought it might be useful to try to capture and summarise the process. What actually happens:

  1. Your child dies. Unexpectedly. Horrifically. Sometimes brutally.
  2. You are traumatised. Pitched into an unimaginable space of deeply intense pain, shock, horror, disbelief and agony.
  3. Your body expels anything it can physically; vomit, tears, shit, noise.
  4. And, from this point, for a potentially infinite period, you live a life that is, at best grey.
  5. The Trust responsible for the ‘care’ of your child will speedily present a ‘Shame but nothing to see here’ type line. 
  6. There may or may not be talk of an investigation or ‘root cause analysis’.
  7. You will probably start to ask more focused questions.
  8. The response to such questioning can be anything (or shift) from faux assurance that everything possible is being done to get find out what happened, to hostility or simply silence.
  9. The process seems to be continually delayed by the actions of the Trust. They fail to disclose documents or complete versions of documents. You become more concerned and continue to question.
  10. A narrative soon surfaces. You’re the problem. You, with your persistent questioning, your inability to ‘move on’. Your unreasonable actions are causing problems for others, including the staff involved. 
  11. There may be attempts to smear/discredit you through nuanced reframing or positioning of events or explicit blaming.
  12. If the investigation finds that your child’s death was preventable the Trust may apologise (probably publicly if the report is made public). The superficiality of this apology may become apparent when the Trust pitches up to the inquest with barristers and coached staff in an attempt to refute any real responsibility.
  13. The NHS, that cuddly British institution that you’ve grown up with warm fuzzy feelings and respect for, is not your friend when something goes catastrophically wrong.

Wow. Just bleakly bleak. With a load of bleak on top. Despite detailed NHS policy spelling out what to do. At the Clinical Human Factors Group conference that Scott was speaking at, one man told us about his experience after his wife died. The Trust were completely open, took responsibility for what happened and worked with him in investigating her death thoroughly and transparently. He emailed me after and said “I know that my journey was made easier by the commitment and personal philosophy of some staff in the hospital trust.”

So it can be done.

The big question is why does it tend not too?

[Three years on and no answers…]

The courier and the cornet

We now know the internally commissioned external investigation draft report* will arrive by courier on Saturday morning.  It’s good to know exactly when to expect it but this is an enormous thing to wait for.

So enormous, I’m not sure how we deal with it really. Not your usual post that’s for sure. I doubt the courier will have any idea of the importance of what s/he is delivering. Of this carefully crafted set of words relating back to last summer and earlier. To when LB was alive. If I open the door maybe I’ll mention it in passing as I sign the form. Or maybe I’ll hide in bed. Gnawing on my knuckles until it’s all signed for and in the house.  It’s tricky when you don’t have any reference points around ‘reading an investigation report into your child’s death in hospital’.

Then there are the decisions around how to read it. When to read it and where to read it. Rip it open and devour every page on the spot? Carefully make a cup of tea and settle down in a carefully chosen space (chosen on what criteria?) to carefully read these words (when?) that may provide an explanation about how what happened could possibly have happened.

And that’s the biggy of course. We kind of know this already. Having read every written record relating to LB’s care for the last six months and the CQC report. But what if there are other lurking horrors to discover? Nah. Surely not. There can’t be.

But then there’s the uncertainty around the outcome of the investigation. What we’ll do with whatever conclusions (if any) the report comes to. I have no idea. I’ve never seen a report like this. Will it be about LB? Or will it focus on ‘learning outcomes’? Is LB already consigned to the dustbin of ‘a lesson to be learned from’? (Or more likely tied up in the yellow hazardous waste his dirty clothes used to come back from nursery in). Or will the report be about him? Our dude. The legend.

Well there ain’t anything we can do about what’s going to be in the report on Saturday morning at this stage. So I’m thinking the advice from a lovely mate from earlier is probably worth a punt; try and think about it as a necessary step to get through in this process. A step forward. Unbearable but movement.

In that case, we should probably stock up on ice-cream and ginger beer. And have Keane lined up. Ready like old times.

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Garden state

DSCF4483 1

On holiday for two, possibly three, weeks now. Almost on cue after a weekend of NMC agitation, the panel delivered their decision around the impairment of the four nurses still in the ‘game’ at 10am this morning. Day one of annual leave. Week 13 of NMC hearings. Year 6 for the whole shebang.

None of the nurses should have faced serious disciplinary action. More a good old disinfect and reinvigorate with kick ass refresher training to blast away the sour notes of being embroiled in a languishing ‘service’ kicked into the long grass by a greedy and hopelessly inadequate new mistress/trust.

What this process has achieved is to make howlingly visible how unfit for purpose the NMC is. And generate dread, horror and anxiety.

LB’s key nurse (the one the panel inappropriately gushed over) was found ‘not impaired’ and released while the final three were found impaired in some ways. They will be told of their sanctions on Thursday at 10am. Funny how these panels can pinpoint how long something will take in advance. At least they finally discovered the Health and Safety Executive ruling over the weekend [cough cough].

Tom went to work. Rich and I wandered up to Headington Homewares to get something to oil the kitchen table. It’s been battered with over five years of non attention now. We came back and left the new ointment in the tin on the table. I read in the garden. Distracted by the recently shifting (small) terrain. There’s a raised slope in the grass with a 10 inch or so ‘dry stoneish’ type wall thing down the left hand side joining the slope to ground level.

A dip in the grass appeared a few days ago.

DSCF4415

‘Come and have a look, Rich,’ I called when I first noticed it.

He appeared, peered from the back door and said ‘Yep, it’s sunk a bit’.

Today I studied this dip every so often over the top of my book. It’s as if someone has pressed a space hopper down firmly on the slope and caused the low bank to spill out.

I ditched my book and started poking about the spillage with a trowel. Pieces of easily broken, thin, deeply rusted metal appeared just below grass level. I took some in to show Rich and Tom. Nope. No interest. They didn’t even touch them.

After another half arsed attempt at reading, I downloaded a metal detector app. Genius idea. I slowly waved my phone across the parched grass like I’ve seen people do on beaches. Red. Green, red, red.

Tom appeared in the kitchen. I told him about the app.

‘Mum, that’s never going to work’.

It does. Well it does if you get really close to metal. We used a fork to test it. Doubting Tom removed the fork hanging off the back of my phone and I went back to dig a bit more. It was hot work.

Rosie rang. ‘What’s this about you digging up the garden, mum?’

I told her about the app. We laughed and chewed the fat.

I went back to dig.

It’s hard work digging when no one digs with you.

I don’t mind. The mysteries of the past are soothing. And earthy.

The NMC and the fact free determination

This is going to be a detailed post as it’s important to highlight just how shite the NMC panel ‘fact determination’ about the STATT nurses is. This is about the hearing process rather than what the nurses did and didn’t do.

As background context feast your eyes on this:

Maintaining public confidence and proper professional standards is a bit of a stretch given the almost fact free determination. Instead, the 66 page document contains unsubstantiated assertions, conjecture and an erasing of evidence from previous hearings. I’ll present a few examples here to give a mcwhiffy flavour of the whole thing. The six nurses are referred to as Colleagues A-F.

Batting for the nurses

The bias throughout the document is quite simply breathtaking. Here’s the description of one nurse. The same nurse who refused to answer a question at LB’s inquest on the basis of self-incrimination (evoking Rule 22).

The panel fall over themselves in a smorgasbord of judgement and conjecture which makes ‘the dog ate my homework’ seem a reasonable excuse. The extent of this bias is beautifully captured in the following extract.

The expert witness clearly states a risk assessment should have been done and patients with epilepsy should be within physical reach at all times. This reiterates the expert witness evidence from LB’s inquest and the GMC hearing. The panel attempt to bury this unassailable evidence in a set of absurd and discrediting sentences. Under some pressure… declined to express a view… She could not say…

How can she say what the outcome of an assessment might have been when it wasn’t done? Putting her ‘under some pressure’ is also a chilling comment.

A very partial engagement with ‘evidence’

The pesky facts that get in the way of the chosen panel narrative are ignored or buried as we saw above. They argue at length that the nurses could not have known LB was having seizures in the unit. That I told them LB had a seizure in May is erased. The fact [this is a fact] that I emailed the unit three days before LB died to say I was concerned he had been drowsy at the weekend is dismissed using evidence from the CTM notes.

This handily ignores the RIO notes where staff reported LB was subdued and red-eyed over that weekend [more facts]. A few paragraphs later the RIO notes are used as (quote) ‘positive evidence’ to show that a nurse made a verruca care plan for LB. The determination (see what I did there) of the panel to rule out any whiff that the nurses should have done anything differently because LB’s epilepsy was ‘well controlled’ is undermined by the fact [yep, another one] that they all knew he had had a seizure in January. Just a few months earlier. This document is more about annihilating actual facts than determining them.

The old language giveaway

There is a littering of language which demonstrates the lack of panel objectivity. I don’t know if this is typical of an NMC panel determination but sweet baby cheesus I hope not. Tom has been an employee at Yellow Submarine for 8 months now and his work involves writing reports. He knows you have to be objective with the language you use. A quick google shows the panel chair has been doing the job for way more than eight months (and I suspect is considerably older than 19) so I can only assume using words like ‘unsurprisingly’ must be commonplace among NMC panel determinations.

A further example can be seen in the following two paragraphs.

The first sentence is again absurd. How could there be evidence of something that didn’t happen? Then there is an emphatic ‘precisely’ underlining apparent good nursing practice. This is followed with a mealy mouthed ‘may have been incorrect’ in the second paragraph which makes me want to gouge my eyes out it’s so deeply offensive. It was incorrect. That’s why LB is fucking dead. [Howl]

Blame, blame and more blame

Blame rears its ugly head again. Particularly hideous given the judgement in the HSE criminal prosecution stated there.was.nothing.more.we.could.have.done. Blaming us again is astonishingly cruel.

Without any apparent reflection the panel say that “the undisputed evidence before the panel is that it could be very difficult to engage with Patient 1″. Undisputed evidence. Just a quick reminder that these nurses are specialist learning disability nurses. All they could get was ‘a grunt and a nod’

‘It would appear’ appears throughout the document in defence of the nurses. In the following extract ‘it would appear there was limited additional information that could otherwise have been sought from the family’. How can they possibly make this judgement? One bit of evidence (that destroyed part of my already savaged heart) underlined how little understanding the panel (and nursing staff) had of LB:

In his oral evidence, Colleague B confirmed Patient 1’s fear of gangs of youths and his reluctance to go out alone.

He didn’t go out alone. He never had. This is a pretty substantial piece of information the nurses were missing.

We though (‘they’ ‘they’ ‘they’) could have/should have done more.

We visited too much (‘virtually every day’) and there is a juicy third hand suggestion that I was so difficult the unit had to introduce a telephone triage system to cope with me.

Venturing further into the realms of the absurd

The final example takes absurdity to a new level. Yep. It is possible.

One charge was that the nurses didn’t make a planned referral to the epilepsy nurse. It turns out the person they all thought was the epilepsy nurse (Miss 12), wasn’t. [I know]. With a palpable flourish, the panel dismiss the charge. There was no epilepsy nurse to refer to. Do you hear me? And this is a fact. A fact I tell you. The over-use of the word ‘fact’ in this paragraph kind of suggests the panel know they are on flaky ground.

I can almost sense weariness from Mr Hoskins (who I assume is the NMC barrister). Such twisted, twisted logic.

I got as far as p18/66 with this analysis. It continues in the same vein. Grim, biased, childish nonsense. I’m sickened that this could be considered to be of ‘proper professional standards’ in any way shape or form. When you add in the fact [yep] this has taken five years and during the interminable process the NMC shared our personal details with all six nurses and their counsels twice, it’s very clear this body ain’t fit for purpose.

Sharks on the rooftops

I went for a wander round Headington late afternoon earlier. In part to practice taking photos with my new camera and because I remain so blooming upset/agitated by the description of LB in the NMC hearing ‘determination of (un)facts’. How dare a fucking ‘panel’ of a nurse and two lay people who never met LB and have done nothing to try to understand anything about him be so callously disrespectful of who he was.

No doubt they will argue their determination is based on evidence but evidence is not statements like so and so ‘seems to suggest that…’

Distressing, unnecessary and cruel.

In the late afternoon sun I wandered past the Co-op where LB smashed doing the shopping back in the day. Still makes me chuckle. On to Posh Fish, a go-to chippy for 20 years though our visits have dropped to rarely as the kids have grown older. My mum and dad took Rosie, Tom and LB there for some nosh on the day of my viva at Warwick in 2006. Rich and I pitched up later to have a celebratory beer with them. Such a joyful day. Posh Fish rocked. Reach for the stars stuff it seemed at the time.

Sharks on the rooftops.

Then round to the other Headington shark. The one we used to go and look at when the kids were tots. Rosie was convinced for years it had been a fish and chip shop. I think maybe as a way of trying to make sense of an enormous shark apparently falling head first from the sky through the roof of a terraced house.

At the end of the shark road is the funeral home LB was in before his funeral. Well in and out of because of the balls up over his post mortem. Behind the side window is the ‘viewing room’ or chapel of rest. It’s just a room really but a room completely and devastatingly not like any other room.

[For geography nerds, the John Radcliffe Hospital is up the road there on the left.]

As I waited to cross the road directly opposite a coach went passed blocking my view. Oh my…

Angel Executive Travel. No.fucking.way.

This coach passed me on the day of LB’s funeral. Walking in distress and agitation in the park across the road (the same road). A different type/flavour/density? of distress and agitation.

I didn’t know whether to laugh, cry or punch the air.

I’m taking air punching.

At the end of a week in which professional sharks (not our local fun and quirky ones) have once again been circling for blood and behaving like fucking spunktrumpetweeblewarblers we’re not going to let LB’s memory be sullied in a crass, ill-informed and deeply biased report.

On Friday we’re back to London to fight the fucking fight that never, ever seems to end; to try to establish the humanity of our fun, quirky and beautiful children.

‘A grunt and a nod…’

The Nursing and Midwifery Council produced its determination of facts yesterday. Six nurses referred by Southern Health who also decided the psychiatrist had done no wrong. (We referred her. She was eventually suspended for 12 months by the Medical Practitioner Tribunal Service panel last November, saved in part from being struck off because she worked in ‘the difficult field of learning disabilities’.)

The difficult field of learning disabilities

The NMC hearings have been going on for a few months now. We boycotted them. We didn’t think the nurses should have been referred (and the NMC sploshed our personal details to them and others). It turns out the NMC panel is as unenlightened as the MPTS panel.

The determination is 66 pages long and deeply repetitive as charges and evidence overlap. I seriously hope a dedicated and brilliant doctoral student will one day meticulously analyse the content of these disciplinary hearing documents which are laden with assumptions, snide judgements, some pontification and ignorance.

The most distressing part (these documents always rip your heart out, punch it repeatedly and intricately slice it with a Stanley knife seasoned with chilli and lime) is the callous dismissal of LB as someone ‘too difficult to make a care plan with’.

No one is too difficult to make a care plan with.

A sort of peripheral (that is, never engaged with him because he wasn’t ‘assigned to her’) learning disability nurse giving evidence said LB ‘didn’t verbally communicate a lot, he’d sit and listen and you’d get a grunt and a nod but you wouldn’t get much to go on’.

You fucking what? [Howl]

The panel accepted this statement without question and thought it important enough to regurgitate in the determination. It will be on public record, ironically demonstrating where serious nursing issues lie. With no comment or reflection.

How can an NMC panel be so complicit in denying LB’s humanity?

Why are these panels so fucking ignorant?

Why? As LB would ask, repeatedly.

The determination goes on to consider the charge that we were unjustifiably restricted from visiting LB by having to ring and ask permission to visit him in the unit. [There were advertised visiting times.]

I dunno.

Phoning to ask permission to visit a patient? Within visiting hours. Daily. For 106 days….

Ahhh. Difficult mum stuff again. They really can’t help themselves. Dismissed at LB’s inquest, publicly retracted by Southern Health in June 2016, and summarily dismissed at the Health and Safety Executive hearing in March 2018 (below), mother blame is back again. And again…

Tsk, said the panel, oblivious to this history. Oblivious to LB dying. [He died.] Oblivious to any understanding of what this experience must be like. Oblivious to anything. Including an almost complete lack of off site visits and therapeutic sessions that family visits could ‘clash with’.

The charge was unproved. (“difficult”) Relative A clearly misunderstood the point of having to phone and ask. This was no (quote) “unjustified” restriction. It was justified given the frequency of the family visits.

We visited too much.

A new coating of mother-blame assimilated into these disciplinary hearings without reflection. Do panel members ever venture out into daylight? Christ. Are these panels linked to the anonymous ‘panels’ that make decisions around budgets and other stuff when our kids turn 18? Who are these panel people? How do you become one? Are they middle class (typically white) people with exclusive life experiences?

Does anyone scrutinise panel membership?

There’s no logic, sensitivity or apparent thought underpinning this latest determination. And no dot joining between the evidence from other hearings (or around the deaths of Edward, Richard, Danny, Thomas, Oliver, etc etc etc). Each person is singled out as an atomised being, subjected to different, unfathomable, barbaric rules, actions and judgements. Without any apparent recognition or awareness by ‘panels’, coroners, ‘independent investigators’…

Why are these dots so hard to join?

Ordinary people (and juries) get it.

A death anniversary distraction. In two Acts.

LB’s five year ‘death anniversary’ is slowly, oh so slowly, approaching. A now familiar tangle of dread, sadness, unexpected tears, and more sadness. With a sort of ‘five year’ incomprehensible label slapped on it. I’ve been snappy, irritable, weary, overwhelmed by the enormity of it all. Sad. So fucking sad. Tomorrow is five years to the day I last saw LB alive. I’ve been obsessively counting back for the last couple of weeks. Dipping into my blog to see the slow denouement captured in what was ‘real’ time at the time.

I’ve learned that death anniversary distractions are important, and almost impossible to identify in advance.

Act 1

On Saturday I had a meeting with the INQUEST Family Reference Group to talk about a new photography project they’re plotting. It was held in Lauderdale House, Highgate. I caught the Oxford Tube to London in the morning, reflecting on past journeys with LB (all hilarious). I functionally picked and plotted my way across London using a combination of Google Maps and my Oyster card. Hot, hot and hotter. Notting Hill to Tottenham Court. Out of the Northern Line steam bake to brilliant sunshine at Archway. The 20 summat bus up Highgate Hill.

I got off in one of those ‘drops of paradise’ spaces that exist in pockets around London. A beautiful, old white house on the edge of Waterlow Park. Parkland, lakes, a wild meadow, dips, low hills and easy like summer sunshine activity. BBQs, blankets, bunting and laughter.

The meeting was productive, moving and over (for me) by early afternoon. Walking back to the station I suddenly wondered how close Highgate Cemetery was. A cheeky Google in the shade showed it was a mile diagonally across the park.

Highgate Cemetery. Two sites divided by a road. The West side was guided tour only. The tour was about to start.

The next 70 mins was an exemplar in grief anniversary distraction. Stunning, idiosyncratic, unexpected, mystical, and enormous. Deliciously cool, green and death related. I devoured names, dates and stories on gravestones and learned various death nuggets.

A broken pillar signifies a death cut short.

After the tour I wandered round the more tamed east side of the cemetery, clocked Marx’s tomb and others before heading home. Distraction job unexpectedly and brilliantly sorted.

Act II

We’ve got a velux window above the sink in the kitchen which has hosted a false black widow spider (FBWS) for weeks, maybe months, now. High up in the corner. Balanced with kick ass authority in a tangled, sort of mussy looking cotton wool web set up. We’ve discussed this spider with vague concern (me and Tom) while it’s grown chunkier.

I’m not a close up spider fan. I regularly peer up to make sure it’s showing no dropping down signs when I’m at the sink.

This afternoon a small party of flies and one if those look-alikey wasp things were mashing it up in the window space. At one point the wasp flew directly into FBWS corner.

‘Christ’, I thought grimly, ‘game over’. After a determined shake with some sass, it pinged free and bounced to the other side of the window.

I got the mop handle. This wasp deserved to live. Within seconds, I’d opened the window and it flew free. I went back to the kitchen table to chop some lettuce and felt the lightest tickle my neck. Yelp (yep), flick and leg it to the living room to tell Rich. Let’s just say he was underwhelmed.

I returned to the chopping board.

Movement on the tea towel on the bench below caught my eye. The spectacular, shiny, brilliantly skull decorated FBWS.

I did a mangled scream/shout/’oh my fucking god’ holler combo [I know]. Rich immediately captured the spider in a plastic cup and took it outside.

“Are you sure you got it?!” I asked, “I mean how the hell did it get across the kitchen like that? Did it… [shudder] jump?”

“You do know it’s nearly the end of one of the most exciting World Cup matches so far..?” he replied.

Life.

Death.

Distraction.

Don’t poke the beast…

The footies on. Somewhere. Everywhere, it’s so damn quiet. Home alone with Bess. Listening to music. Head spinning from so much happening and not happening. LB’s five year death anniversary speedily approaching. The day before NHS 70th birthday celebrations. I feel queasy already. Hunt and NHS England remain silent about the leder review. Bouncing back FOI requests as too expensive. Refusing to comment.

An extraordinary level of engineered wilful disinterest.

Non-disclosure

I put in a Subject Access Request a month ago asking to see Valerie Murphy’s statement for the MPTS hearing. She read my statement. Her barrister commented on it during his illness inducing cross-examination.

The answer came back today:

“I do not believe there is information that is disclosable under the DPA”. Oh. The GMC will however disclose extracts relating to LB if I sign a confidentiality agreement.

Murphy had no such restrictions. She can say whatever she wants about my statement. To whoever she chooses.

And so it continues..

A week ago a bizarre comment was posted on justiceforLB.org:

The answer to George’s question was this:

Spencer and Murphy studied at the same university at the same time.

Oh my.

[Howl].

We know snarky (or worse) and largely unchallenged discussions go on behind the password protected doctors.net (and I’m sure other forums). These started within weeks of LB’s death. Mother (and other) blame has had a remarkably unremitting purchase in health, social care, education circles for decades now. Noted and discussed at length by families. A steely silence (apart from the odd dissenter) from professionals who must recognise this shite for what it is.

These random, unexpected and typically incoherent attacks are pretty hard to endure. Our boy died. He died. You just don’t seem to understand this. He was 18. Can you imagine your child dying a preventable death in the ‘care’ of the NHS?

A beloved and beautiful child. Dying. A preventable death.

Can you begin to imagine?

Why don’t you fucking try to imagine?

 

 

 

 

 

 

 

Five years and four months

Time.

Approaching five years since LB died has been weighing heavily. Five years. Half a decade. Mostly taken up with a brutal fight for accountability. Leaving us barely standing at times. Irreparable, inexcusable damage and destruction.

Five years.

Five years since I last hung out with, touched, talked with, loved with my eyes as well as my heart, my beautiful, extraordinary boy.

Five years.

The Williams Review

Today the rapid policy review ‘Gross Negligence Manslaughter in Healthcare’ report by Norman Williams was published. Four months in the making. A ‘rapid policy’ route. Four months…

Four months.

Four months of hearing from ‘many individuals and organisations. Bereaved families, healthcare professionals and their representative bodies, regulators, lawyers, investigatory and prosecutorial authorities, as well as members of the public…’

A review conducted, written, signed, stamped and published within four months.

Four months.

Shorter than the length of time NHS England sat on the leder review before sneakily publishing it in May.

Four months.

And five years.

#bastards