Atoms, falling stars and the passage of time: John Macleod’s latest blog

It’s such a cliché to remark on the velocity of the passage of time, a sign of growing old. Winter has turned to Spring again. Time does fly, then it runs out. But it aint over till it’s over.

Yesterday Pippa and I were reminiscing, saying how we couldn’t believe it was two years since she started as our new manager. Three years ago, we were still denying the reality of the pandemic, still making summer holiday plans thinking all we had to worry about was sourcing toilet rolls.

Our ARC time has just been extended, 18 months, funded. It’s a great opportunity to do even more and show how much we matter. Not that you’d necessarily know this if you were a fly on the Zoom when I recently met with our academic leads to share the news and agree a plan. In retrospect maybe Friday afternoon wasn’t the best slot, but sometimes the extraction of blood from a stone can seem easier than motivating this lot. Imagine trying to get a bunch of Hell’s Angels excited about a night out at the ballet. Pippa and Sabi look concerned at our post Zoom de-brief.

“That was tough, but they’ll come round to it – they always do” says Sabi, “You look like you need a glass of wine”.

“A glass of wine?? Mate I need a pint of methadone…”

We all met in Bristol the other week, face to face, our turn to host the quarterly ARC Directors and Managers get together. On the agenda, implementation and impact, how we do it, how we make and measure it, how we do more in our extra time. The meal the night before where John Wright from Bradford kept pulling my leg that I should make a speech, which I didn’t.

Instead, we chatted about our school days, how my complete ineptitude for any kind of sport meant that my games teacher always had to allocate me to a football team of disappointed classmates who would complain, “Aw for fucksake, we had him last week.” Val Mann from NIHR and me come from similarly impecunious working-class Scottish backgrounds of the same era. Turns out we also received similarly uninspiring careers advice. Aim low, avoid disappointment was the guiding mantra.

Since Val was good at science, she was encouraged to consider a career as a lab technician, sensibly she ignored this advice. I used to work weekends in a Spar shop (how else would I finance my blossoming and increasingly expensive recreational activities?). My boss offered to put me forward for a management training scheme, my careers teacher got wind of this and became quite excited at what she considered a once in a lifetime opportunity. I thought I’d rather have red hot needles rammed through my eyeballs.

“Actually, I thought I’d go to university” I told Mrs McGarry, “Oh, ‘The Professor’ wants to go to university”, she sneered disdainfully. I had a massive crush on her which made her dismissiveness of my dreams and visions even more poignant.

Our ARC meal ended with a minor crisis, the restaurant expected us to pay the colossal (but excellent value) bill there and then, no they couldn’t just invoice us.

“Shit, what are we going to do?” I asked Pippa, “I booked a holiday last week, my card’s maxed out.”

“I’ll call Lucy,” she says, not even remotely flustered. God she’s so capable.

“But it’s half eleven” I remark, thinking “Yeah but just phone her anyway”.

“She’ll still be up” says Pippa, already punching the number into her mobile.

Lucy is still up, she confirms the location of our corporate credit card, we retrieve it from the drawer of her desk in Whitefriars, we pay the bill (two attempts, that’s all Pippa needs to guess the credit limit on the instalments).

We have also contrived to book the same hotel as the whole Manchester City football team, fresh from victory in the FA cup. Forget anything you’ve heard about Bristol’s cutting-edge status, like its football teams it’s strictly lower league in terms of metropolitan sophistication, like Edinburgh without the castle. Not a proper city like Glasgow or Birmingham. And it’s not accustomed to this level of celebrity, the locals have turned out in force, it’s all over social media.

“Sounds exciting” says June on the phone, “is the hotel swanky?” She’s in Scotland with her sister.

“Not really” I say. “Liar” says June.

“Not as swanky as the one you got for my birthday” I reassure her.

“Well, that’s good” she says. “Get some sleep, good luck tomorrow.”

Nicky Cullum and I chair the meeting the next morning. It seems successful, Nicky is so effortlessly commanding, the “Wellbeing” vegan lunch is a big hit. Afterwards, Pippa and I go for a coffee and de-brief with Natalie Owen, Head of NIHR Infrastructure at the DHSC – the boss, in other words.

“Tell me about your world” says Natalie “What do you do, what are your challenges?”

“Don’t you know?” I ask her.

“Of course, I know”, she says “but tell me anyway”.

I hate being put on the spot like this, I should be more prepared. But somehow, I amaze myself, it all comes out, a stream of consciousness but oddly coherent, everything I’ve learned in the four and a half years since the summer of 2018, since Croatia beat England in the world cup and I walked back to my hotel across a subdued London littered with discarded flags.

“And another thing” I go on, hitting my stride, bloody hell it’s like crack, you start then you can’t stop.

“About these national leadership areas, I mean the ones that map onto national priorities are straightforward, you’ve got a focus and some funding. But ‘applied health informatics’, no focus, no funding, the thing they’ve just given HDR UK over seventy million to sort out, and you expect us to do it for free, along with everything else, is that a reasonable expectation? I mean it’s like being a GP in Hartcliffe.”

I imagine Natalie hears this sort of stuff all the time, she smiles sympathetically.

“And how’s it going?” she asks.

“It’s going great” I say.

“Good, because nobody said it was going to be easy, isn’t that what makes it fun?”

“Obviously” I say.

I should mention, that if you’re confused, even disappointed, at the lack of news here then see this link to our newsletter. This isn’t a newsletter.

It’s a reflection, a witness statement, a tonic for the troops as we stagger from the wreckage of the last three years. I’m on the road again, up and down the M5, M6, M74 circuit every other week, June’s been in Scotland a lot, her sister’s not well. It gives me a chance to drop in and see Dad.

And it means I’m often on my own in Weston, which I hate as I’m scared of the dark. Always have been, ever since I was a kid, used to sneak into my parents’ bed following some particularly graphic, gruesome nightmare. Used to drive my poor Dad spare, he was never the best of sleepers.

“For god’s sake he’s eight years old” he used to complain to my Mum.

We had great conversations though, me and Dad, before dementia melted his mind. We’d be sitting in the caravan (OK Mum, “mobile home”) on a Friday night watching Curse of the Werewolf, or something equally conducive to a restful kip. Dad’s thought processes were permanently addled, by a combination of the Diconal and Ativan he was addicted to, washed down with a glass of Old Vatted Demerara (prince of rums) if he thought he might have a cold coming on.

“See that settee” he’d ask me rhetorically, “what do you think it’s made of?”

I knew this was a trick question.

“Polyester” I’d suggest.

“Nope” he’d respond sagely. “It’s made of atoms. Do you know what atoms are like?”

Actually, I had a fair idea as my Nana had bought me a subscription to “All about science” before she died. But I thought, “Play the numpty” a strategy that has served me well all my academic life.

“They’re like solar systems” says Dad “With protons and neutrons in the middle like the sun and all these little electrons spinning round them like planets.”

“That settee is like a Universe, like millions of solar systems, imagine flying in your spaceship to the end of the Universe, and finding out you’d just got to the edge of the settee.”

Wow, totally weird, I thought, I can see me having a good sleep tonight.

Weird is a funny concept (no, really). As a human characteristic I imagine it arises from the interplay between genetic and environmental factors – maybe with a bit of rogue, epigenetic methylation thrown in for good measure, like most things.

What made me think about this was a memory of when I first met June. She told me about her sisters – three of them, not counting the two that died in infancy. They all had their own phenotypes. Moira – closest to June – was the brainy one “could’ve been a professor”. Wilma, next in line, was the quiet one, deep and unknowable. Then finally Gem, only two days older than me, the legendary beauty with an insatiable appetite for boys on motorcycles.

“How about you” I asked.

“I was the nutter, the weirdo” she told me. “Just like you.”

This took me aback to be honest and I protested my normality, how could I be a weirdo, I was a doctor for goodness’ sake.

“Rubbish, you’re a weirdo like me, we’re two peas in a pod” she laughed. “That’s why I love ya.”

But what makes us what we are across our life, weird or not weird, happy or not happy, healthy or unhealthy? What shapes us, how much is chance and mostly immutable and what’s amenable to change? These are the abiding concerns of the epidemiologist and questions extremely relevant to our mission in ARC West. Because two fundamental aims of that mission are to mitigate the effects of childhood adversity and to reduce inequalities in health. So, we need to try and understand how childhood adversity shapes health and what we might change.

I’ve already mentioned in previous blogs how the quest for clinically useful causal understanding through observational epidemiology is largely a futile one – “the Gloomy Prospect” as @mendel_random puts it. But undeterred, we battle on, what else are we going to do? Be realistic, demand the impossible.

And maybe because they have an intuitive grasp of the contingency and uncertainty inherent in much of what is presented to them as evidence, politicians, policy makers, commissioners and so forth tend to have a pick and choose attitude to the science they’re guided by. They love a good story. NIHR encourage us to tell them great impact stories, rather than just list our grants and publications.

These blogs are about stories, not impact stories so much, ARC stories, stories about me and the people I love. They’re stories about context, the context to the mission mentioned above. Today I’m feeling hopeful about that mission, must be the impending spring and summer, everything seems possible.

To return to stories, June and Moira had more than their fair share of trauma and adversity in early life. The details don’t matter, well they matter a hell of a lot to June and Moira, but they’re personal. They were once happy children, as far as you can tell from old photographs. Moira, with her goofy grin and her bunches. Then the shit happened and kept happening. They both raged against it, a rage that manifested itself as “delinquency” and “acting out”.

Remember June’s notes, her CAMHS ones from that period were extensive. I never saw Moira’s; I expect their content was similar. June told me that she thought if she created enough fuss, drew enough attention to the family, some socially responsible individual would conclude that something was seriously wrong and save them all.

It never worked out that way. Eventually, at the age of 12 she decided the only option was to escape so she ran away with her 18-year-old beau, a sailor boy. He got the jail, she got sent before the first of 24 children’s panels, who in the space of the next 4 years sent her to 24 different residential placements. The boy got out the jail when she was 16. She married him, another attempted escape, she’s a romantic. It’s a trait we share. We are all in the gutter but some of us are looking at the stars. At 17 she contracted Hepatitis B, in relation to a further “escape” attempt, broadly speaking.

It’s all in the notes,

“Presenting complaint – Feels like shit, eyes have gone all yellow.”

Her nickname then was “June the spoon” – I asked her if it was a reference to the paraphernalia that probably transmitted the virus to her.

“Can’t remember” she said, “I think it just rhymed with June.”

Before that she was “buggie” – anybody who was a working-class kid at a Scottish primary school in the 60s or 70s knows about two things. The belt and the buggie game. Every class had a “buggie” kid, unkempt, ill-fitting uniform, nervous smile anticipating imminent persecution, dad on permanent sojourn in the Big House, mum too fond of a drink. In the queue for assembly the other kids would deliberately bump into them and go,

“Eugh, I’ve got the bugs” then pass it on in a game of tig, “you’ve got the bugs now”.  When they started doing biology in P7 they changed it to “microbe”.

Not long after we met, we started talking about “the book” – the magnum opus, the misery memoir that would make us our fortune and allow us to retire to a BnB on Skye. It wouldn’t be miserable, it would celebrate resistance,

“Even though my world is a world of shit, I am still alive and I am not afraid.”

It would be both funny and educational, people would come away from it smiling and with a new understanding of health inequality. We’d call it “Dark side of the spoon” or “In spite of ourselves” after the John Prine and Iris DeMent song.

We still haven’t got round to it. June’s happy for me to practice. She reads all this stuff, censors it,

“Nope, that’s for the book take it out, you can keep that other bit.”

She wrote a play back in the day, Trade it was called, self-explanatory really, it had runs at the Netherbow and the Traverse and won prizes. June acted in it too, “Debbie” that was her working name, all the lassies have working names, keeps a bit of distance between them and the business. In the last scene, Debbie recalls how the men who couldn’t control their abusive impulses towards children would say that she could never tell and threaten her with terrible consequences if she did.

“I will tell” is the last thing Debbie says before the curtain comes down. Meaning, my story will be told, sooner or later, one way or another.

We’ll get round to it, I just need to retire first.

But in the meantime, there’s still ARC work to be done, plenty of it. I went to London a couple of weeks ago to talk about reducing health inequality. This is now an official mission apparently, not just because it’s the right thing to do, the moral high ground is the natural habitat of our ruling class after all, but because it makes absolute economic sense.

I mean think about it; the trouble with the underclass is not so much that they die early, per se, it’s that they get expensively sick before doing this during a worrying proportion of the most potentially productive years of their life.

It’s an odd one though, because when we talk about social variations in the experience of illness and premature death, we don’t generally talk about their most likely (the contingency of epidemiology aside) fundamental cause: social variations in wealth and power and the adversities that accompany these, alongside the variation they create in access to life choices and chances. Instead we talk about targeting risk, or “need”, a more tractable aim.

Look at Hartcliffe, no shortage of risk here. And targeting risk effectively could make a big difference to health inequality, as has already been convincingly demonstrated, 15 years ago, in a paper in the Lancet. If you targeted risk properly with the most effective interventions then available, you’d almost wipe out social inequalities in cardiovascular disease – still the biggest cause of health inequality.

So, what we should do has been clear for a while, it isn’t mysterious, unlike, love, happiness, the enduring popularity of the idea that Transformer is Lou Reed’s best album – those are genuine conundrums. But health inequality is no conundrum. It is tricky though, partly because of what Julian Tudor Hart, a GP in South Wales, called the “Inverse Care Law” which states:

“To those that already have and that need the least, shall be given the most”. The basic rule of advanced capitalist “meritocratic” societies.

“Poor people, pretty much fucked” is another way of putting it. The paradox is that effective care, the thing we’re all trying to make, tends to create not reduce, health inequality because it gets used most effectively by the people who need it least. Early in my academic career I encountered the inverse care law. My first foray into field epidemiology concerned Chlamydia, the commonest non-viral sexually transmissible infection. Probable cause of substantial misery, mainly experienced by women, costing the NHS around £100 million a year – in 1996 money. Chlamydia is easily treated with cheap antibiotics, but many folk don’t know they’ve got it till it’s too late.

So as a pilot for something bigger we randomly selected 200 adults aged 18-45 from the list of a GP in central Bristol, kids were an ethical minefield, and we figured anybody over 45 was unlikely to engage in any intimate relations, we were young then. We sent them all a questionnaire about sex and a pot with a prepaid envelope to send us a pee sample for Chlamydia testing. About 35% responded first time, another 10% to another letter, then 10% more to phone calls. I visited the rest, traipsing round Bristol with my A-Z and a rucksack full of questionnaires and sample bottles, like some mad Avon lady.

“Hiya, I’m John, I’d like to talk to you about sex and get a pee sample, can I come in?”

Amazingly, many folk said yes, all the lonely people I guess. We got our response rate up to over 70%. The results were interesting, and we confirmed them in a much bigger study. The main risk factors for having Chlamydia were having sex with lots of different people (STI risk associated with sex, shock) and being more difficult to engage in Chlamydia testing. The harder it was to get you to be tested for Chlamydia, the more likely it was that you had Chlamydia, the inverse care law.

That’s the backdrop to our ARC national priority programme on health inequality, which is great by the way, I’m behind it 100% – one of the best things we’ve done together as ARCs. It supports my much-loved project led by Rachel Hiller on trauma focused CBT for care experienced kids. But we’re all pushing against the tide of the inverse care law. Where does Rachel find it most difficult to recruit study sites for our project? Have a guess, the places where need is greatest and Children’s mental health services are on their knees.

And it’s not just mental health problems, increased risk of most health problems you can think of is strongly associated with the experience of childhood trauma. The set of cancers related to bad behaviour is a prime example. You don’t need to have been traumatised to behave badly. Some people just do it cos they think it’s fun. Nothing much traumatic ever happened to me, I got half my face sliced off in a car-crash when I was 10 but Mr Mustardi – ace plastic surgeon at Seafield Hospital in Ayr – sewed it back on, good as new. But I wouldn’t claim to have been significantly traumatised. Though I have behaved badly,

“I’ve no led a blameless life” a patient once told me. A traumatic childhood is neither a necessary nor sufficient precursor of bad behaviour, but it certainly helps.

I’ve little doubt that June’s sister Moira’s life-long career of bad behaviour originates in her traumatic childhood. She was completely shitfaced first time I met her, pinned me against the fridge in her kitchen, hand down my jeans, tongue down my throat.

“You picked the wrong sister, mister” she told me, before we were interrupted, and I escaped.

“Your sister just sexually assaulted me in the kitchen” I told June.

“Oh, get over yourself and stop being dramatic for fucksake” she said,

“That’s just Moyz, she won’t even remember in the morning.”

Like I said, from the old photos Moira and June looked like happy children. Then some men murdered their childhood.

Moira was diagnosed with advanced oesophageal cancer late last year. She has no plans to go gently into that good night. You can bet she will rage and rage and rage.

She started her chemotherapy just before Christmas and on New Year’s Eve a blood test said she had an Acute Kidney Injury. June and I took her to the Western General.

When she’s nervous, Moira talks twenty to the dozen. In the 10 minutes it took the young female junior doctor to clerk her in, Moyz had admired her tattoo (“Is that Celtic?”) told her I was a doctor (just a GP mind, not a specialist like you), confessed her commitment to continue smoking weed (“Marry Whanna” when the girl looked confused) and asked if she ever felt oppressed by the male, white, patriarchal hegemony that dominated her chosen profession.

“Must be hard, I’ll bet?”

“She wasn’t a specialist” I said when the doctor had left, “She was only an F2.”

“Don’t I get a fucking consultant?” says Moira “Not on Hogmanay, Moyz” I told her.

“Right, I need to go for a smoke” she announces, “Get me a wheelchair.”

June and I wheel her through the hospital, Moira clutching her stash purse, like a lifebelt. The empty hospital corridors are like the Overlook, I keep expecting blood to come gushing out the lifts or for us to bump into a pair of malevolent twins.

It’s blowing a gale outside, and two young lads are already in the doorway, the one in his own wheelchair doesn’t say much and has only one leg. His pal is more talkative, they’re sharing a joint.

“Awright boys” says Moira, “mind if me an’ mah sister here join yous for a wee smoke?”

She cadges a lighter off them, I’m feeling furtive, expecting to be arrested any minute. “Just ignore him” Moira advises them.

They all exchange stories, the boys are from the Infectious Diseases unit, “Should have stuck tae the weed eh?” the talkative one remarks.

“You having some of this then?” Moira asks June.

“Aye, go on then, why not” says June.

“Goody two shoes willnae be wanting any will he?”

“Who cares” says June “He’s no getting any, this is just for us.”

Then the pair of them start singing,

“Don’t drink, don’t smoke – what do you do, you don’t drink don’t smoke what do you do?”

Doing the jazz hands, the boys laugh.

I can see the young girls they once were, smiling, like in the photos, before all the shit happened.

Like the snowfall in the river the moment passes. Moira indicates she’s ready for us to wheel her back, but before she goes the boy with two legs says,

“Hang on a minute missus, here take this” and presses two thumb-sized balls of compressed herbs into her hand,

“That one’s kush, the other’s cookie dough, enjoy them later” they all smile in solidarity.

“Be lucky missus” says the boy.

“Aw son, I think mah luck ran out” Moira responds,

“Dinnae say that missus, it aint over till it’s over.”

Sometimes you find love and kindness in the strangest and most unexpected places.

I had my 60^th birthday last month. How on earth did that happen.

“Don’t worry, it’s the new 50” says June, yeah right, at least I get bowel cancer screening, and free prescriptions.

The day before my birthday, June gave me a piece of paper with a postcode on it.

“Get in the car and drive” she says, “We’re going on an adventure.”

The adventure takes us to the poshest, swankiest hotel I’ve ever stayed in, East Devon, other side of the estuary from Salcombe.

On a freezing clear night we’re sat outside, clutching a bottle of champagne, looking up at the milky way, all those tiny andromedas, the great settee in the sky.

A star falls, like a tracer bullet. We used to watch them over the volcano on the outskirts of San Salvador, bright flashes where the bombs were dropping, Operation Phoenix.

“Make a wish” says June “but don’t tell me.”

I bet we both made the same wish. It aint over till it’s over.