The afternoon before the hearing

 

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I spent the afternoon with Tom trying to get photos from an old mac that’s been gathering dust and more upstairs. Eventually, after exemplary focus and persistence by Tom, and a few chuckles along the way (yep, yep, my computer smarts are shite, I’ve a desktop that demands a cone of shame and I’ve not updated anything since about 1749), 451 pics from the (g)olden days are now on my desktop. (A fair few have an alarming luke white question mark but we can save that battle/puzzle for another day).

Above is LB ploughing his own path up a hillside holding tightly onto to his i-summat music player. The gadget he produced myriad playlists on, back in the day. Each with one song on.

It was our last family holiday in 2010. He did what he typically did; stuff (the day out in the Black Mountains with a makeshift picnic) in his own way, own time while breaking nonsensical and meaningless rules along the way. So what if he was far behind? He got there in the end.

Before we got stuck into this task Rich and I walked into town to get a hard drive. On the bus home Julie Dawes, Sloven CEO, rang in response to my email from Friday. Good for her for calling back. I want to present the gist of our conversation here because I think it contains or flags up important elements/ingredients for the relationship between Trust staff and bereaved or harmed families.

The Sloven board apparently made the decision that no board member would attend the Health and Safety Executive hearing at Banbury Magistrates court tomorrow for ‘various reasons’. This was because they decided it would cause us further distress and it was ‘usual’ to send the communications manager to such hearings.

Julie Dawes rang me out of the blue on Friday because she was worried about the distress their planned press release would cause us. We weren’t asked whether the attendance (or non-attendance) of a senior exec at the hearing would cause us distress. This suggests that baby steps of improvement (concern about press release distress) remain coated in relentlessly longstanding concern about Trust reputation. And an accompanying lack of really understanding what is important to families.

You can’t assume distress in one area (attendance at the hearing) while checking it in another (press release content) without raising questions about what is actually ‘important’ here. Our feelings as a family or Sloven comms/reputation.

And when you’ve endured the extraordinary through Trust actions like we, and so many other families, have the ‘usual’ is irrelevant and obscene.

It’s really time to start walking up hills using the example of LB (and others) if you mean business around changing practice. Chuck out the grotesque, the turgid, the meaningless, the offensive and step up. Demonstrate the ‘impact’ a patient’s death has had on your organisation with actions. Not talk. [As an aside, and a frankly unapologetic plug for my book, one of the things I learned from early readers was ‘show don’t tell’.]

Think about the thin arguments you’re making and challenge them yourself. Instead of sending the comms manager ‘as usual’ (I struggle here with what ‘usual’ is in such circumstances), make sure a board member pitches up, even if you anticipate a five minute hearing. LB wasn’t given the chance to live. Don’t show further disrespect or worse by thinking it’s only a ‘five minute hearing’, or because you want to downplay the importance of the hearing.

Stand up publicly and show you fully understand and recognise that your organisation is responsible for the preventable death of a patient. Until you do this, no other fucker is going to.

Julie Dawes said on Friday she wanted to offer any personal help she could. It turns out this was distinct from arrangements around the hearing tomorrow and board decisions about attendance. A revealing comment (which is not to knock the offer of help which we appreciate). For families ‘the personal’ is too often the process. And the obliteration of humanity through that process.

By the end of the conversation I think we were sort of on the same page. I appreciate her sticking her neck out by ringing earlier. I hope productive discussion followed our fraught conversation. And I hope some respect will be shown to our beautiful boy who died in the cross hairs of a greedy, arrogant and failing Trust, local authority and CCG, tomorrow.

He deserved so much more.

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The lost day… Helsinki way

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Up at 5am today to catch the 8am flight back to Gatwick after a wonderful weekend in Helsinki. My supersaver flight. £30. Such a blinking bargain. The airport bus was full of sleepyheads.

“Ah, I’ve found what I’ve been looking for…!” announced the driver after 20 minutes or so. “The airport. I stop at Terminal 1 first and then Terminal 2.”

The bus emptied out at Terminal 1. I waited on board wondering what all the fun was at 1.
“Er, excuse me,” said comedy driver getting back on board. “Where are you going?”
“Terminal 2”, I said.
“This is Terminal 2. You’d better get off or I’ll take you back to Helsinki…”
Blimey. Where was Terminal 1? The check in machine spat my booking reference out and told me to go to the help desk. I queued for ages with a few other people who had also fallen foul of the machine. When it was my turn, the woman looked completely perplexed and called for help.

“Is there a problem?” I asked.
“No, no. Not at all. The system is very slow, that’s all.”

The second woman called for a third woman as the queue behind me got longer. I turned round at one point and did a ‘Sorry guys, some sort of system error’ shrug to the grumpy looking passengers. They blanked me.

After a few more minutes and a lot of heated chatter and jabbing the screen, the third woman cracked the problem.

“This ticket is for yesterday” she said, triumphantly.
“OMG. No way. What date is it today..?” I yelped, looking around for a floating calendar. She flourished the ticket at me.
“Look.”

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November. Not yesterday. Not even close.

The three women, clearly relieved their system wasn’t faulty, pointed me in the direction of the Norwegian Air hidden service for losers who can’t book flights properly, two floors below ground level. In the dark space I found two guys with Norwegian Air logos on their t-shirts playing Pokemon (don’t) Go. They politely told me to get lost. There is no standby on Norwegian Air.

Back above ground I had to suck it up and buy a single ticket home. Flying with SAS. Leaving nine hours later via Copenhagen. A five hour trip.

From Terminal 1.

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A brighter moment from yesterday: the Sibelius monument.

Postscript: It turns out the cheapest flight back was business class. Luckily an eagle eyed SAS guy noticed some marking on my boarding pass and told me. I’ve now been in the SAS lounge for 8 hours and 20 minutes now. With cheeky white wine on tap. Funny times.

Those husky dogs and Devon days

“Do you remember those husky dogs we saw running wild a while back, Rich? Loads of them… Where was that?”
“That holiday in Devon. Remember we were walking back from a pub lunch along some trail. The kids went back on the other track…”

This was on Sunday morning. In bed. I lay there in the half dark feeling like my breath had been stolen. Wrenched from me by being unexpectedly pitched into a memory I hadn’t meant to seek out. That long ago? Really?

I remembered the rain, the fresh air, the fun, the boredom, the lack of sun. I remembered us all just being. Chittering, bickering, bantering and loving. Hanging out. Chunky Stan took to swimming in the sea having been resolutely opposed to getting wet until then. I told Rosie off for using my umbrella to collect sea water for a sandcastle she built with Tom in between showers. We had fish and chips in Appledore and chuckled a few years later when we watched a documentary about The Jacksons house hunting there. And we squeezed into the little living room to watch the Olympics when it was simply too wet to go out.

Lying there I felt intense grief. I call it grief but that’s just a label. A word. I felt an intense agony, a feeling impossible to describe. There are no words. I’d forgotten about that pub lunch. About the walk back when we watched the kids running along, in the distance. How they made sure LB kept up. And the huskies that randomly overtook us. Making a bolt for freedom.

I missed LB so much I wondered how I would ever get up again.

I think about him constantly, in a sort of ‘careful’ or maybe self managed way. I have a whole set of (almost) distractions and strategies to make living bearable. This was unguarded thinking. Laying bare the reality of living after the death of a cub. One who died in the careless and relentlessly brutal hands of the state.

Being thrown momentarily back into that space made me realise how I’ve got used to living with pain over the last two and a half years. A pain made so much worse by the actions of Sloven, Oxfordshire County Council and now NHS England. The health, social care, commissioning triumvirate. Taking it in turns to kick the boot in. There’s still no publication date for the Mazars death review. Delay, after delay, after delay. Any talk of candour or transparency, of listening to families, of mortality review functions, of a shiny new independent (NHS) investigative body just makes me want to weep. And rage.

‘Stop talking shit,’ my brain snarls. ‘Just stop making it so much worse.’

I had an email from the police this afternoon. An email that was thoughtful, straightforward and kind. No messing, no prevarication. Just human.

Like those Devon days.

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A commotion in the ocean

Sticking my toe back in the holiday thread. So many memories. Sigh.

Richy Rich regularly took a selection of the kids camping.  One time he had three of ’em, aged 6, 4 and 1.5.  On the Sunday, he took them to the beach at Highcliffe, near Bournemouth. They walked down the cliff path to the beach, dumped their stuff and ran into the sea. Instantly a big wave knocked Richy’s glasses off and swept them away.

Now Richy is like Vincent van Gopher without his glasses.  He can’t see squit-diddly.  This is not a good situation to be in with teeny tiny kids in the sea.

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The H word.

Holidays. Shudder. Even the word makes me feel queasy.  Going on holiday was like taking a bunch of pups off to some new park, full of smells, the hint of the odd rabbit and plenty of trees to piss against.

Plus, of course, the real hounds who delivered their own brand of disruption effectively most trips.  (Little aside here to mention the infamous time that Stan decided to have a wee on Petey’s designer sweatshirt on the beach in Pembrokeshire. Sigh).

So a gentle, informative, visual start to this new thread…

1. Find space.

 

That’s it.