[I’m revisiting unpublished blog posts this week. Sorry I started firing them into the public domain earlier without making that clear or realising that blog followers would get a glut of email post notifications. I’m going plod through them over the next few weeks and add commentary where appropriate in bold without changing the original text. Some may be half finished (sometimes without a title) like this one. Written 19.2.15.]

Blimey. Days away from the anniversary of the publication of what we now call Verita 1. The official start date of #justiceforLB. How awkwardly awkward is this? A young dude with epilepsy made worse by medication, has his medication changed in a specialist [howl] NHS secure setting, experiences increased seizure activity noticed by, er, his family. Is left to bath unsupervised within spitting distance of four members of staff (while the other other four patients allegedly slumber) and drowns. Not surprisingly, the independent investigation into his death was damning.

I went to Banbury today for the first time and, in a fresh setting, couldn’t help noticing the tiny manoeuvres parents do to keep their kids safe from obvious hazards like busy roads. Simple stuff.

It was an exemplary fuck up situation.

And?

And?

There is no and. A year later we’re waiting for an inquest, an outcome of a police and HSE investigation, Verita 2 and a Mazars death review. Oh, and staff disciplinary action.

If LB had full citizen status and died in some other way; a road accident, street attack, drug overdose, whatever, the justice process would typically be sorted by now. Another young person, Martha Fernback, died locally around the same time as LB. Someone was found accountable for her death nearly a year ago. A year ago? I read her mum’s book in which she mentions seeing LB’s freshly dug grave in the woodland section of Wolvercote Cemetery that July. When she was choosing a spot for her daughter [howl]. Her daughter who fell into the mainstream justice stream. Without this murky NHS connection.

Not only are we getting no closer to any sniff of accountability for LB’s death, but the ongoing reviews are becoming increasingly meaningless to us. Sloven board paperwork carelessly records that the mortality review [Mazars death review] will be published late summer. Eh? I was reassured only a week ago by NHS England that this was met).

[Published late summer… Gawd. We were so blinking naive. I thought the non action was ‘awkward’ back in the day. That the obviousness of the failings around  Connor drowning in an NHS bath, highlighted by an independent review, would generate kick ass action. [Howl] This is the plan. The long game. A slow smoking out of bereaved families using dirty tricks like ‘not knowing’, endless delay, state funded stinky Pete counsels and the juicy button of ever present, dazzling pain to press and harm. 

The Mazars review was eventually leaked to the BBC ten months later on 10.12.15.  ‘Officially’ published by NHS England (NHSE) a week later. The day parliament went into recess for Christmas. NHSE pulled a repeat stunt this May with publication of the leder report. Attempting to kick unsavoury findings without commitment to action into the long grass. In 2015, Jeremy Hunt answered questions about the Mazars review in the Commons. Hollow answers but ‘answers’ of a kind. This May he simply left the chamber when the leder review was raised.

There’s palpable optimism and resistance in these unpublished posts. It makes me feel an odd combination of sadness and a raging ‘fuck you, you fucking bastards’. So many years passing. So much billy bullshite. Still.

Over the last few weeks in meetings or chats on social media, the ‘high profile’ of #JusticeforLB has been raised. Anecdotes shared. Email comments. A range of people who now know Connor’s name and what happened.

“#JusticeforLB is a social movement. An unprecedented capturing of the humanity of Connor and so many other people. It’s given families the confidence and strength to challenge the death of their child or sibling…” 

Good. Brilliant even.

Revisiting these unpublished posts has made me reflect how easily they could be written today. 

I don’t remember going to Banbury.]

 

Being LB’s mum

Being LB’s mum. I wanted to write this before ‘being LB’s mum’ changes into something unrecognisable. Which I’m sure it will. Because it already is in some ways.

Being LB’s mum. What a maelstrom. What an identity. What a full on, brilliant, intense, raging, frustrating, hilarious, difficult, intense, relentless, remarkable, time eating, pointless, rich, extraordinary, despairing, delightful, fearful, life changing experience.

I hope the pages on this blog (pre-2013 entries) capture some of this.

I think about LB all the time. Pretty much every waking moment. These thoughts jumble around in, as yet, uncategorised, spaces. I hope, as time passes, I might be able to tag them a bit and park em in a bit more of a coherent order. Maybe. Maybe I won’t.

Maybe the breathtaking pain will continue. Maybe it will become something different. No sign of that yet. But maybe. Maybe it will reduce.

At the moment, I just miss LB. My head spins out of control trying to understand why he’s dead.

Our campaign

The #justiceforLB campaign is taking hold.

Good. And a big up to the many people who are supporting it and driving it.

LB’s death remains non-national headline news? Kind of totally jaw dropping. Given the context. An example of what the hell, consigne to the rubbish bin of life’. Worthless. Meaningless and unremarkable.

But, hey, how many “learning disabled” people make the news?

Who really cares?

I loved an earlier tweet  suggesting we were a “bit too real and honest for delicate sensibilities” (@NitramNotram). I agree. We (talking on behalf of a brilliant, passionate group of varied individuals) aren’t constrained by using delicate language.  We tell it like is. We try break through layers of indifference, shake up the lacklustre or misplaced focus of  big charities and cut through the bullshit,

There has been a shedload (decades) of research, policy making, focus on the provision of “support” and “services” for learning disabled people. Talk of personalisation, direct budgets, choice and autonomy. And? Other than the odd dude, most people I know and know of, in “independent supported living” are being short changed, constrained, bullied and experiencing less than acceptable life expectations. Their parents, if they are still involved, are experiencing an ongoing battle to try to improve or maintain the level of care offered.

Completely shite provision/nonsensical, unwieldy, un-person centred, costly systems rule.

Check out Mark Neary’s blog to get a whiff of this in action.

LB died. He is dead. [Some word could feature here but I don’t have any]

We, as family have to try to make sense of what has happened on a daily basis. In agony, pain, distress, senselessness and outrage.

At the same time. Bizarrely, we’re ‘released’ from having to either schmooze or fear some (typically crap hole) service provision.

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.

ryan5-38

“Don’t call me crazy”..

Watched the second part of this tonight on BBC3.  I’m seriously developing a reaction to BBC sub-standard, crapshite, sensationalist, exploitative, poor, cheap, shoddy, myopic, tedious [feel free to toss in any descriptors here, they’re bound to tick em all..] type programming.

Wrong. In so many ways.

I’m claiming an insider perspective to comment on this particular series, though I don’t want to review it in a formal type way. I’ve spent enough time (informally hanging out in the lounge/unit/LB’s bedroom) and formally (in the notorious community team meetings) in a mental health/learning disability unit, to offer some insights into the process of incarceration into these spaces.

The footage of the ‘senior team’ meetings was depressing. And familiar. An emphasis on “fake findings”. That is, kind of meaningless findings, that are just non findings. Er, he/she is ‘er, hearing voices’ that ‘er, may or may not be’, ‘er, potentially life threatening’.. Or made up, gleaned from the latest favourite programme, part of an elaborate setting..’ The tendency of ‘professionals’ involved to seize on what they recognise from their training, rather than engaging with what they were hearing from the young people talking to them, was crap.

I’m weary of tripping around being the mother of a child/young dude like LB. There is no space to say to say ‘this is shite, don’t waste our time’. Even though it often is.

Investigation and observation fuelling/feeding off/creating/generating issues. Common sense ditched in favour of sensationalist/overblown/salary endorsing nonsense that painfully left family members at sea and ‘patients’ lost. Experiences were framed in a pathological/medicalised way that left no space for creativity, originality, difference despite constant background footage of community, engagement, enjoyment and sociability.

A set of beings and behaviours packaged into a tight, awkward and wrong fitting set of parameters.

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.