[I’m revisiting unpublished blog posts this week.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.