We’re halfway there: our Director John Macleod on reaching our halfway point

As I struggle to compose my seventh ARC blog, I should say straightaway that I was never a huge fan of hair metal in general, nor of Bon Jovi in particular. But at this keystone of our ARC’s arch, I have in mind a particular night in 1988. The Forrester’s Inn on Longmoor Lane in Fazakerley, me and a squad of 20 student nurses, who had felt sorry for me (broken heart – again) and had dragged me out with them to celebrate the midpoint of their professional studies.

Thirty months in, ARCs are at their own midpoint – half-way there. Which is why I remember that night in Liverpool. “Living on a prayer” coming on the juke box, all the student nurses going nuts, up on tables, hands in the air. And while I stared into my pint of snakebite wondering what the actual point of anything was, a rather insistent, overexcited and saucer eyed girl grabbed my hand and shouted,

“C’mon an’ dance ya miserable fucker!”

How can you refuse an offer like that?

No more than you can refuse Zoe, who with Lauren is putting the final touches to plans for the national “ARC Impact Showcase”, our celebration of half a lifetime. We at ARC West are showcasing something we’ve done that epitomises what ARCs are about. It wasn’t an easy choice given the number of candidates, but we have chosen ADViSE. ADViSE is the implementation in sexual health clinics of an approach used in primary care to identify people exposed to violence in their intimate relationships, and giving them effective help.

It grew from work started by our implementation lead Gene Feder, long before I bumped into Jenny Donovan at a photocopier in Canynge Hall and she persuaded me that I might be an ARC Director. It was nurtured in the CLAHRC by Gene, Jenny, Jeremy Horwood and many others, and the ARC continued this. We’re helping it spread now, with our partners at IRISi. Impact takes time, more than a five-year funding cycle, and this story is far from over. If you ever get the chance you should talk to Gene about it, and you should check out the campaign which runs from today until 1 April. The comms team have a table, listing the amazing things that all the ARCs have been doing in the past 30 months, inspiring stuff. And daunting because in the final column of the ARC West row under “proposed format” it says, “News story – and possibly more”. It’s that possibility of more that Zoe wants to discuss. “I was wondering if you could do another blog, giving you plenty of time to agonise over it!”

Oh Zoe, you’ll never know the hurt I suffer, and all the pain I rise above – inserts emoji of grimacing face crying ironic tears.

And as well as highlighting what we’ve achieved we are considering our ambitions for the next 30 months. Our main ambition is to make things better, because I don’t know about you, but in my view, things aren’t good at the moment. Make things better is not very specific, not very SMART – I’ll get to SMART in a minute.

I already told you about the resolutions, they’re going absolutely fine thanks for asking – well on the whole, or as Camus says, “in a way”.

No motorbike yet, June is still exercising her absolute right of veto on that one, but Mike Bell has offered to go to the motorbike shop with me, in case I do something really stupid. The mental health infrastructure thing is taking shape, again “in a way”. We met recently, predictable chaos, who’s chairing? Um, you I think, Hahaha laugh the academic theme leads, it’s like herding cats with us lot, isn’t it? Yup, try not seeming so pleased about it eh? But a plan is emerging – slowly. And Dad is out of hospital – with scabies. Mum is mortified, he must have caught it there… mindful of their already dismal CQC rating hospital deny this possibility, claiming he brought it in. She was last this “black-affronted” (Scottish colloquialism for the experience of extreme embarrassment) when at one of my several graduations I let slip to a fellow graduate’s parents that we’d lived in a caravan since I was eight. “Mobile home!!” hissed Mum, giving me the look. And the exercise is going great, only 30 minutes ago I collapsed purple faced in the shower with crushing central chest pain radiating to my jaw and left arm. “Call 111” I croak to June, before passing out. “In a minute” she says, “I’m just finishing Marina Hyde”.

But if you’re forcing me to get SMART about our ambitions for the next 30 months, I’m going to highlight two. First, make effective treatment for trauma related mental health problems available to care experienced children and young people. Second, make better use of data.

The second doesn’t sound very sexy does it, nor particularly SMART, but stick with it.  Back in 2019, ARC West were given a national leadership role for Applied Health Informatics. Nobody was more surprised than us (well Oxford perhaps). But we take this role very seriously. There’s not any extra money attached to it, but that doesn’t stop us doing stuff. We just need to be creative, and we’ve been very creative. But we’re not satisfied. We want to do more, much more.

By way of background here’s a brief history lesson. In the last 70 years or so, observational epidemiology has enabled amazing progress in understanding the causes of illness, and the application of its methods in human experiments has allowed the discovery of effective treatments. Just 50 years ago, Thomas McKeown could convincingly argue that medical technology had a negligible effect on population health. That’s not true anymore.

Much of this progress comes from studies, and the data collected on people taking part in them. But people who take part in research studies tend to be younger, healthier, and better off than people who don’t take part in research studies. Sometimes this doesn’t matter much, other times it matters a lot because it makes the results of the studies misleading. But most people (aside from a couple of anarcho-hippies munching on lentils in a yurt somewhere near Machynlleth) have contact with public services, and those services collect data on them. If we could use the data in epidemiological studies, we might know better how to make people healthier.

But the problem is the data is messy, usually when it was collected the last thing anyone was thinking was “one day this might help an epidemiologist”. It’s unintelligible, it’s equivocal, it’s contradictory, stuff is missing and you don’t know why, it didn’t happen or nobody recorded that it happened and so on. It’s also hard to get at because of rules and regulations around the fact that some of it relates to sensitive stuff we might not want other folk to know about.

In this context it’s maybe not surprising that in the last 30 years, epidemiological research based on “administrative” data has made rather limited progress, with exceptions obviously. It’s not for want of trying. Some of the best minds in science have been trying very hard. And since COVID, literally millions have been thrown at it, and important things have been enabled, but it’s hard work. Perhaps the hardest work is getting useful information out of hospitals, the places where the sickest folk are exposed to the most expensive health technology (and people know how to work a ventilator).

I’m going to tell you a story that illustrates some reasons why. It concerns my amazing wife June; I’ve checked, she’s OK with it. Good job, means I don’t need to talk about me so much. Zoe never tires of telling me that I’m nowhere near as interesting as June.

“Nobody cares about your inner life John. More June please.” Here you go then.

It relates to her hospital records. When we first met, she asked me, “Could you get hold of a copy of my records, I’d be interested to read them?” We were sitting having lunch in the canteen of the old Infirmary. “They’re downstairs here, aren’t they?”

“No way, I said, that’s illegal, I’d get into loads of bother.” I imagined the extent of the “bother”: struck off, penniless in a gutter, probably with a needle in my groin – just as Mum prophesised.

“Suit yourself” she said. A few days later, she produced a brown A4 folder from her bag, it had her name on it. “How the fuck did you get those?” I said, feeling the cold sweat starting to seep through my shirt. “Wasnae difficult” she shrugged “Told the guy I was a ward clerk; I think he had a wee fancy for me.” Oh my God, I felt like I was in the middle of Tinker, Tailor, Soldier, Spy. “I need to put those back” I told her. “Sure” she said, “in a bit.”

As you can probably imagine they were action packed. We read them together in the bedroom of our tiny sandstone tenement flat on Brunton Terrace, the only place we could get privacy from the kids. They were an interesting historical document, particularly because much of them related to June’s adolescence in the early 70s. Things were different then. Doctors would write things in patient notes they wouldn’t dream of recording these days, the assumptions and prejudices of their class laid bare. So, in 2022 no doctor would ever write in a young woman’s notes anything like “this dirty little prostitute” or “clearly educationally subnormal”. But in 1973 they weren’t that shy.

And, like today, these hospital notes were nearly all on paper. And the notes on paper are generally unstructured, a mess of medical aide memoires, judgements, jokes, medico-legal back-covering and such. And paper is flimsy, it gets wet, it gets misfiled, lost.

Like the blue “casualty sheet” – May 1973. When she saw it, she remembered the incident it related to. Not long out of approved school, she’d met this boy in a launderette. Just some random youth. Turns out he was a bit of an entrepreneur – acid dealer. Drug-dealing was more of a cottage industry in those days, not the apex capitalism it is now. So, they’d got to the sort of sexual sparring that kids have been doing since nineteen-oatcake (more Scottish vernacular). He laid out his wares – somewhere between 70 and 100 black microdots stuck on strips of tape, trying to be impressive. “Dare me to eat them all” says June, proceeding to eat them all.  She says the last thing she has a clear memory of is getting on the back of his motorbike then something about lights in the distance.

The lights were actually an island that June had decided she needed to swim to from the beach where she’d ended up with the boy and some pals. She’s not a strong swimmer, could barely manage a length of the Commonwealth pool. Only blind luck that she didn’t die; and if she had I doubt it would have been recorded as ICD-10 T51-T65 “Toxic effects of substances chiefly nonmedicinal as to source”, more like W65 – W74, “Accidental Drowning and Submersion”. Death certification is notoriously unreliable. The new pals took her to A&E.

“16 yr old female presents having ingested unspecified large quantity of LSD and alcohol c. 4 hrs previously, agitated and incoherent, companions prevented attempt to swim to Inchcolm Island, deep cuts to L arm, ? glass, ? intent. Limited history from patient, wanted to “cut badness out”, states needs to go home “to look after sisters”. O/E deep lacerations x 3 L forearm, no apparent damage NVT, CNS grossly intact (uncooperative) other obs NAD, brief collapse with generalised shaking, no tongue biting, no incontinence, no evidence post-ictal, not seizure, glucose 5.4. Steristrips and 4/0 vicryl x 5 to lacerations, ATT. Imp – acute intoxication, ??emerging psychosis, probable ongoing SH risk, no apparent insight, psychs to see.”

That’s from memory but you get the gist. And it’s not that different from the literally hundreds of casualty sheets I wrote myself 20 years later. Trying to capture the essence of a complicated situation and a plan to manage it. I remember another young woman. Came in blue, barely breathing, seconds from respiratory arrest, and after I’d given her the naloxone and she’d spewed methadone green sick all over me, she seemed more pissed off than grateful (nice, I thought, I just saved your bloody life). But I still put my best professional sympathy face on and asked, “so were you trying to hurt yourself?” Intent doesn’t influence the immediate management pathway, but it shapes the subsequent one. “Nah ya dick,” she answered grumpily, “I was trying to get monged”. OK, so we’ll call that “recreational intent”.

But you can see the health informatics challenges. All that highly sensitive but potentially highly informative data. If only you could collect it on the thousands of people presenting in Accident and Emergency Departments in similar circumstances.

In Bristol we tried to make a start with a “self-harm register”, systematically collecting a standard list of information on everybody coming to our casualty departments after a deliberate act of self-injury – as opposed to just youthful high jinks gone a bit wrong. People tended to present at times when the psychiatrist that should have assessed them wasn’t on site, they’d often gone before the psychiatrist arrived, so they didn’t get assessed and they didn’t get followed up. Based on this, the hospitals changed the psychiatrists’ rota – more people got assessed and helped. Simple stuff, but it made things better.

The self-harm register is just one of a number of “data assets” derived from the million citizens that live in Bristol, North Somerset and South Gloucestershire, that we’re trying to bring together in a Trusted Research Environment – hospital data, GP data, social care data, education, police, ALSPAC – in a jigsaw of our people and how they interact with our public services, what this costs, what impact it has. You might call it a Learning Integrated Care System. We just call it Healthier Together. It’s a work in progress but we’re making progress and we’ll make more in the next 30 months. They’re trying something similar up in Liverpool. We’re going there soon to see what we can learn. First time I’ll have been back in 32 years. I might even go for a pint in the Forrester’s Inn.

So, our other ambition, making things better for care experienced kids. We’re going to realise this one, I’ve absolutely no doubt. Why? Because we’ve got a grown-up in charge. Rachel Hiller totally rules our project meetings, no herding cats here, absolute control. She’s got “completer-finisher” written all over her. I love Australians, they’re like Scots without the baggage.

I blogged about Rachel’s project a year ago – it’s about making earlier, appropriate, diagnosis of PTSD possible in young people who’ve experienced public care, then giving them better access to evidence-based, NICE recommended treatment. It’s about implementing new care pathways, and ensuring professionals know about them. It’s just starting now in multiple sites across England, including right here in North Somerset. And I told you that one of the reasons I felt such personal affection for this project was because of June and my experience as specialist foster carers. “Specialist” doesn’t imply any special expertise by the way, you just get paid a bit more to care longer term for the craziest, most lovable, hardest to place kids. “Get you”, you probably thought, “what a boastful virtue signaller”. Bloody right, you need to be proud of something. That’s what we tell all the kids, do something that makes you proud of yourself. It works for some, not others. It worked for foster daughter 2, the pony lover, star of previous blogs. She’d come home from school and say, “I’m pretty proud of myself today” because she’d resisted the temptation to thump her mate Hannah, even after she threw a chair at her. “Might is never right” I tell the kids, “Look at Putin”. “But sometimes you need to fight for what you want to be,” counters June. I saw her head butt a student who’d groped her arse in a bar once. Smashed his nose, wiped that smirk of smug entitlement right off his stupid coupon. “You’re fucking lucky I’m a pacifist,” she told him.

June’s experience of fostering predates mine. Foster daughter 1 was already with her when we met, an extended kinship care arrangement, the girl’s Mum a mate of June’s, whose life had got a bit complicated. The girl had asked if she couldn’t just stay with June and her 15-year-old son. June said OK. Social care were pretty relaxed about it. This was the instant family I inherited, a year out of med school, pretty much a kid myself, clueless about parenting. We got off to a bad start when I suggested we might not be able to pay for the girl’s school trip to Euro Disney. Stupidly, I used this as an opportunity to get all fatherly on her ass.

“We couldn’t afford trips to France when I was a kid” I told her sanctimoniously, “It was a day trip to Largs. I was 22 before I ever set foot on a plane.”

“What?” she sneered. “Was powered flight even invented when you were 22?”

She was only 14 years younger than me but liked to pretend I was ancient, clueless, and ridiculous, essentially the role of the parent. Things didn’t improve when she found the dead pike in the bath, she was a militant vegan in those days. I’d wind her up by telling her that tests had shown that over 80 per cent of MDMA seized in Southeast Scotland was heavily contaminated with animal fats – “might as well eat a bacon sandwich hen” I’d say. “No, it isnae” she’d mutter under her breath. The short version of the pike story was that it involved a humanitarian act, and the fridge wasn’t big enough. She was pure raging, “That fish probably had a family” she seethed, “or at the very least a mate”. Her big brother (12 years younger than me) was more the strong silent type, on first meeting me his only advice was “Mess with ma Maw and I’ll fuckin kill ya.” Thanks, noted.

Thirty years have passed, who knows where the time goes? My angry, fiercely loyal, and protective son is a wise old man, with a dodgy knee, dogs and chickens and a son of his own. The girl has two crazy beautiful kids. She’s a senior social worker now, with her own team, she’s bloody amazing, I’m so incredibly proud of her. I don’t tell her enough, mainly because we’re still too busy arguing and winding each other up. She told me last birthday I’d better write a will, “what with your heart”. The arguments are less about pike and holidays these days, more the appropriateness of compulsory care orders or the cultural significance of electronic dance music.

You’ve probably noticed that these blogs are not very informative, I mean they don’t give you much news. Look, if you want news read our newsletters, go on our website, check out our twitter account. Lauren and Zoe do a fantastic job, leave it to the professionals I say. I think of my blogs as being more light relief and morale boosting for the troops, I see myself as basically the Vera Lynn of applied health research.

That doesn’t mean that I’m not serious.

“Every man who has reached even his intellectual teens begins to suspect that life is no farce; that it is not genteel comedy even, that it flowers and fructifies on the contrary out of the profoundest tragic depths of the essential dearth in which its subject’s roots are plunged. The natural inheritance of anyone who is capable of spiritual life is an unsubdued forest where the wolf howls and the obscene bird of night chatters.”

Henry James wrote that to his sons, you can imagine how thrilled they must have been – lighten up Dad, FFS.

Sometimes stories, like the ones I’ve just told you, have happy endings – in a way. Sadly, not all endings are happy, one reason why Rachel’s work is so important.

Social workers call public care “corporate parenting”. Fair enough but the term’s a bit misleading. I mean many social workers are imaginative, hardworking, diligent professionals. But they’re not your parent in most meaningful senses. They won’t love you unconditionally, they won’t prioritise your needs over their own because if they did it would be unprofessional. Sometimes things rub your nose in this brutal truth, like one evening recently. June and I were about to go to bed when there was that scary bang of stone hitting glass, our front window, luckily it didn’t break. I went outside to investigate, nervously. Outside, standing soaking in our front garden, was a boy we know from way back – when we were his respite carers. He’d pitched up homeless. Since he’s only months past his 18^th birthday, children’s social care has no longer any responsibility to meet his needs. Those needs were recently so complex that they could only be met by specialist residential provision costing several thousand quid a week. He had a transition plan, but it didn’t work out. He has local family but again, up till a few months ago contact with them was felt to be so dangerous that it was prohibited under the terms of his care order. None of this detail will help you much in identifying him because his story is so bloody common. He could be any one of thousands of kids.

The transitions team will do what they can to help care leavers, including finding them somewhere to stay. But when you’ve come from a highly structured residential regime, coping on your own in a council flat in an area where nobody else wants to live (that’s why it’s available) presents some challenges. You might have “floating support”, that’s a mobile phone to me and you. And when your day-to-day reality is relentlessly horrible it’s not so surprising that you might occasionally, or even always, feel like taking a chemical holiday from it with anything you can get your hands on. Don’t worry, I’m not about to talk rubbish about drugs, there’s enough people doing that. Quick statistic though, in Scotland during 2020 there were over twice as many drug-related deaths amongst folk under 65 as deaths from COVID. Over half of deaths amongst homeless people are drug related.

But, meanwhile, I’m back with the boy, wondering what on earth I can do to fix this, or just make it a bit better. He’s a diamond by the way, witty, polite, loving, kind, creative – he just can’t see it. Like a 16-year-old girl, still in care, l once asked to share with me what she was good at, what talent anyone had ever complimented her on. It was meant to be affirmative, I thought she’d maybe say dancing, or drawing.

What she actually said was, “Well, I give good gobbles”. I don’t want to sound square or uptight, but it did strike me as a bit depressing that a sixteen-year-old might think that their best attribute was an aptitude for oral sex.

The boy names a place he wants to go, it’s miles away and it’s pissing down. “I’ll walk if you won’t take me” he says. So I take him.

A week later June phones me at the end of an evening surgery. “He’s turned up again, he’s just got out of hospital, I can’t get hold of the duty team.”

I see my last patients and phone the out of hours number. I leave what I hope is a clear message. I emphasise the “Dr”, I spell out his social worker’s name, I say the time and give my mobile number, I emphasise the urgency. Somebody phones me back 30 minutes later. The duty worker is doing her best but she’s pissing on a blazing bonfire. She’s covering a population of over a million souls, too many of them lost. She can’t get him a bed because of his history, she’s sorry, his own team need to sort him out tomorrow. What about tonight? She doesn’t know.

He’s sat at the kitchen table with June when I get home. Showered, she’s given him food and some money, and one of her vapes, told him not to smoke so much weed, he’s wearing some of my clothes.

“John’s going to take you to your sister’s” she tells him (his sister is semi-sane.) “Then you need to see your social worker tomorrow, I love you, remember what I said.” She hugs him, and we go, he barely talks in the car, same car, same seat where he used to bum dance to the music we both loved 10 years ago – Ty Segall, Slaughterhouse. And foster daughter 2 in the back would shout, “Get that crap off!”.

June’s still up when I get back. “You’re angry with me, aren’t you?”

“No, I’m not”

And I’m not, but I am scared, I don’t know how this is going to end.

“Fuck you, it’s not his fault,” she says. “What was I meant to do?”

She’s so much better and braver than I am. I guess she sees herself in him, nearly 50 years ago in 1973, another lost kid. I love her so much.

“I’m going to bed,” she tells me. “There’s stuff in the oven”.

You have to hope, or as a girlfriend told me over 30 years ago you have to have the hope of hope. She was rather prone to melancholy, this girl, and self-destruction. Bit like me then, maybe that was the attraction, that and my shoes. “Groovy shoes” she said the first time we met, nodding at my feet. “You dancer”, I thought, “I’m in here”. Of course, she was only doing it to annoy my ex, they had some frenemy thing going on. I understood, it was fine, and it was fun while it lasted, not that it lasted long. But the importance of the hope of hope was the life lesson she left me with, the hope you have that you will have hope again, even when things are completely hopeless, like Pollyanna. It was her gift to me. I met June about a year later.

I can’t sleep, so I go for a walk, down to the water. Under a full moon, line after line of breaking waves is rolling in off the channel, smashing against the wall of Knightstone Island. I love Weston, it’s nothing like Bristol. Back home, I switch on the telly, Russian tanks, burning buildings. 25 years ago, June was in Odesa with UNAIDS, helping set up an outreach project with “working lassies” in Ukraine’s biggest port. I wonder what those lassies are doing now. May they be happy old women, may their kids and their kids’ kids be safe.

Hope is a dangerous thing for people like us to have, but we have it, always, the hope of hope.