‘A terrible confusion…’

We were away last week and missed the Panorama programme about the death of Jack Adcock and the erasure and then reinstatement of Dr Bawa-Garba from the medical register. There’s a lengthy piece written by Deb Cohen, a medical journalist, here. I wasn’t surprised it’s biased because a previous article by Cohen demonstrates her support for Bawa-Garba. I am surprised it’s being touted as a balanced piece of journalism by (some) medics.

As usual, raising this on twitter generates some pretty low level insults/attack.

“…suggest Sara contacts or shuts up”.

Or this:

There’s also no dot joining with sense offered by other twitter peeps.

Ho hum. Here are some reasons why I think it’s not a balanced piece of journalism.

A poor start…

The article starts with a sweeping statement;

When a junior doctor was convicted of manslaughter and struck off the medical register for her role in the death of six-year-old Jack Adcock, shockwaves reverberated through the medical profession.

There were no shockwaves reverberating through the medical profession when Bawa-Garba was found guilty of gross criminal negligence nearly three years ago. The #IamHadiza hashtag probably emerged some time late last year as medics started to realise there may be implications for their own practice.

Differential treatment

Bawa-Garba is treated differently to other people referred to within the article. She’s presented as a devoted mother, daughter and doctor with elaborate descriptions like “writing till her pen ran out of ink…”

In contrast, mention of the Adcock family is perfunctory and largely brief other than a few paragraphs capturing some of the family trauma and Jack’s character.

This difference is clear from the first mention of Jack and Bawa-Garba in which additional context is offered about the latter.

Jack Adcock wasn’t himself when he returned home from school. He later started vomiting and had diarrhoea, which continued through the night.

Trainee doctor Hadiza Bawa-Garba arrived at work expecting to be on the general paediatric ward – the ward she’d been on all week. She had only recently returned to work after having her first baby.

When Jack or his mum are mentioned sentences are typically short and factual without much or any additional commentary or explanation.

The boy’s hands and feet were cold and had a blue-grey tinge. He also had a cough.

But they [parents] say they heard very little from the hospital. They were sent a copy of the Leicester Royal Infirmary investigation and invited to discuss it, but they didn’t want to.

Cohen repeatedly fudges and fills in the gaps for Bawa-Garba. She doesn’t do this for Jack or his family. They are left with a careless ‘didn’t want to’.

‘But…’

Liberal use of ‘but’ is sprinkled throughout the article in relation to Bawa-Garba. There are few ‘buts’ about the Adcocks.

Fewer ‘buts’ are arguably better in terms of journalistic (or broader writing practice) but the ‘but’ differential suggests Cohen falling off the balanced and informed journalistic perch. (The old ‘mistake’ creeps into the first example here with a dramatic, unevidenced statement.)

But she didn’t consider that Jack might have had a more serious condition. It was a mistake she regrets to this day.

Dr Bawa-Garba looked for Jack’s blood results from the lab. She had fast-tracked them an hour-and-a-half earlier. But when she went to view them on the computer system, it had gone down.

But Dr Bawa-Garba says she wishes she had given him antibiotics sooner.

Bawa-Garba is quoted in full throughout the piece. She isn’t paraphrased, a practice which introduces doubt over authenticity and validity. The Adcocks (and others) are paraphrased.

It was only then, the Adcocks say, they heard the “true facts” and “listened to the detail” about the errors that Dr Bawa-Garba had made.

The use of minutes taken by a family friend during a meeting with the Trust as evidence also suggests questions around the validity of the family evidence. Bawa-Garba however is given space within the article to explain, account for and/or have the accounting/explaining done for her by Cohen:

“I knew that I had to get a line in him quickly to get some bloods and also give him some fluids to rehydrate him,” says Dr Bawa-Garba. He didn’t flinch when she put his cannula in.

Dr Bawa-Garba tried a number of extensions before managing to speak to someone. They read out Jack’s results and she noted them down. She says she was looking out for one particular test result called CRP, which would confirm whether Jack’s illness had been caused by bacteria or a virus. She noted it was 97, far higher than it should have been, so she circled it. But she says she was concentrating so much on the CRP that she failed to register that his creatinine and urea were also high – signalling possible kidney failure.”

Inexcusable failings like missing the significance of blood results are buried in words. Unsubstantiated words that offer flimsy excuses or explanations. Bawa-Garba was concentrating so hard on something else... Cohen almost trips over herself with excuses, explanations, ‘buts’ and the downgrading of what is basically shite practice to ‘mistakes’.

Dr Bawa-Garba had been on call for more than 12 hours when an emergency call went out for a patient who had suffered a cardiac arrest on ward 28 and doctors and nurses rushed to help. In the morning, Dr Bawa-Garba had had to intervene to stop doctors from trying to resuscitate a terminally ill boy who had a “do not resuscitate” order. She assumed it was the same boy. What she didn’t know was that Jack had subsequently been moved to the same ward as the boy who had crashed in the morning – ward 28.

A terrible confusion was about to follow.

She is seemingly oblivious to a doctor basing her medical practice on assumption and guesswork and ignoring the evidence in front of her. Ironically, Cohen seems to be doing a similar job in this article.

A terrible ‘confusion’…

Only one of the numerous failings Jack experienced that day is prefaced with a fanfare ‘failure’ statement:

It was at this point that another failing in Jack’s care occurred.

Any guesses which failing? Yep. The administration of enalapril by Jack’s mum. Cohen includes the inquest evidence that Jack’s mum acted responsibly doing this and that the impact of this drug on Jack’s condition is inconclusive. Despite this evidence she still positions this failing differently.

The inclusion of micro detail at times speaks to a determination to funnel out any whiff that Bawa-Garba did a poor job.

She asked one of the doctors in her team to chase up the results for her patients, and took on some of that doctor’s tasks.

Within this reification of Bawa-Garba’s medical ability, the work of medics is kind of lost. Work is work. Bawa-Garba was doing her job like other staff present were doing their jobs. The guilty manslaughter charge was based on the layers of exceptionally poor care Jack received. Bawa-Garba remains guilty of this charge. A vague statement about taking on some tasks does not mitigate this.

And the unsaid…

There’s so much unsaid within the article I can almost hear tumbleweed blowing through it. While I understand constraints on what can be written in terms of length/word count what is left unsaid is deeply problematic.

Cohen mentions the crowdsourced legal fees by medics which raised over £300k. She doesn’t mention the Adcocks remortgaged their house to cover their legal fees.

She refers to the negative commentary Bawa-Garba has received from members of the public on and offline without mentioning the negative commentary Nicola Adcock has experienced (blaming her for the death of her son).

She speaks to various medics and includes tweets from medics in the article. She doesn’t include interviews with, or commentary from, the wider public. She doesn’t include tweets by non-medics. Presenting ‘us’ and ‘them’ is clear in intent and execution. This is about a ‘wronged’ medic and her rattled peers. A medical guild. There is no ‘public and patient involvement’.

Cohen ignores various inconsistencies; medics belatedly joining Bawa-Garba’s fight, denouncing scapegoating while scapegoating, talking about a ‘no blame’ culture while blaming, ignoring the proceedings of a lengthy trial and appeal process, ignoring the nursing staff.

She doesn’t comment on unchecked inappropriate commentary from some medics circulating on social media.

Or how public confidence must be dented by this demonstration of arrogance, refusal to engage with evidence and self-preservation.

She doesn’t make the link to evidence around the premature deaths of learning disabled people or ask why Jack was the recipient of such exceptionally poor care

In short, Cohen has decanted and deliberately funnelled a particular version of events. In doing so, she’s captured the (medical) sediment and lost the oxygen, the life, the flavour and basic humanity. Cohen had an opportunity to demonstrate skilled, balanced and informed journalism. To explore what happened to Jack with his family, Bawa-Garba, Theresa Taylor and Isabel Amaro and relevant others. She chose instead a route of overly-sensationalising what happened or didn’t happen and erasing other parts. Perhaps feeding on or being being fed by the agitation of a group of medics who appear to have lost sight of what constitutes evidence in their determination to protect themselves.

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…]

[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.