Cautious optimism and even going out again – John Macleod’s Autumn blog

It finally feels like Autumn, after the long Summer heat. Today, for the first time in six months, I shivered. And it’s been a remarkable six months.

The Queen is dead, undeniably the end of an era, the only era that most of us have lived through. We’ve had three health secretaries, two (so far) prime ministers, and changes too at ARC West. My fellow GPs Chris Salisbury and Gene Feder have both stepped down, both having put in incredible shifts. Nikki Walsh is our new lead for Integrated and Optimal Care, Sabi Redwood has taken the reins from Gene as Implementation lead, Fiona Gillison is now our Deputy Director. Team members, too many to mention here, are moving on. Thanks to all of them, they’ve all been great, and the warmest of ARC welcomes to our many new family members.

When my last blog dropped, I was in Porto with June, vivendo a vida louca, well walking the Harry Potter trail at least, first time on a plane in 28 months. We had our BRC interview in April, BRCs are a couple of steps before us on the NIHR translational trainline, our big sister. The interview was predictably stressful and unfortunately also something of a Covid super-spreader event. But it was my first time in London for 26 months, and luckily, I didn’t catch Covid. We had an ARC picnic in May, timed to coincide with Pippa’s Mayfest gig – world premiere of Terra Coda “a symphonic love letter to Earth – exploring hope and connection through the lens of the climate crisis and grief”. Pippa was on first flute. It was emotional, I even got reduced to tears by a woman with an amazing voice who sang,

“I’ll never hold you in my arms this way again Baby”

Bit embarrassing to be honest, there’s no fool like an old fool.

About that time Covid officially stopped, so intoxicated with freedom I went to see Flatworms at the Thekla and got Covid. Consequently, I missed the first face to face ARC Directors meeting in 27 months. This was a huge disappointment as it was Peter Jones’ last as our leader. Peter’s been an inspiration to me, particularly his ability to keep his head when all around are losing theirs, not because he’s misjudged the situation, but because he’s judged it perfectly. Nicky Cullum is our new leader, she’s an inspiration too.

James Nobles, one of the team who’s moving on, won the Montane Dragon’s Back Race. One week and 372km of Welsh Mountain hell. Mike Bell (our other king of the mountains) posted daily Twitter updates on our boy’s inexorable progress up the field, stopping on the way to help distressed fellow runners, rescue kittens from tall trees, point some spaced out stragglers from the Green Man festival in the general direction of Newport – WHAT A GUY! Whisper it, but maybe it’s just as well he’s leaving, a man can only feel so old and so inadequate for so long, and there’s probably only room for one alpha male in ARC West (Mike Bell, obviously).

Two more personally momentous events marked the first half of 2022 for me, involving two men who in different ways have shaped my life. Dougal Darvill retired from GP practice in Hartcliffe. I’ve described in previous blogs how much I’ve relied on Doug over the past 15 years. To be honest, we’re all completely bereft. Tristan Cork from the Bristol Post wrote a lovely piece back in April – I hope we did Doug the justice he deserves.

And my Dad is now in a care home. Mum just couldn’t cope anymore with his night time wandering, his regular falls and their orthopaedic consequences. We found a local place where the people seemed kind, and he’s sort of settling in. He moved there 70 years to the day from when he and Mum first met – weird, like they’d had their three score and ten years. When I visit, we talk about fishing, he’s got a pile of fishing books, and books about old Glasgow, back in the 50s, when him and Mum were first stepping out, the trams, the dance halls, the razor gangs. He gets a bit embarrassed when I clean him up after he’s been to the toilet (the staff are great, but there’s too few of them), but I remind him of the thousands of times he’s done it for me, which makes him smile. In the dining room his new pals, ask who I am,

“My big brother” says Dad

“What does he do?”

“I can’t remember” says Dad

Dementia is hard and horrible, isn’t it? “All those moments lost in time, like tears in rain.”

ARC West have just been given three new post-doc fellowships part funded by the Alzheimer’s Society. They’ll focus on measuring meaningful outcomes of interventions for people with dementia, better support for family and carers and particular needs of people affected by dementia in Black and Minority Ethnic communities.

We’ve just appointed Helen Baxter to lead on impact and knowledge mobilisation with our extra mental health funding. I’ve said it before, but impact is complicated and often unpredictable. Some public contributors recently remarked that participation in co-production had been sold to them on the basis that they would be helping change things for the better, “But nothing seems to have changed, where’s the impact?”

Things don’t change much for many reasons. Evaluation of new things can come to negative or equivocal conclusions. Which can mean that nothing appears to change. That can be positive, even if it feels unsatisfying.

For the past six months, Pippa, the team leads and me, have been touring our stakeholders trying to consolidate engagement, get ideas of what works and what doesn’t, what are the new priorities. All this to inform our application for the next life we hope ARCs will have beyond September 2024.

It’s an interesting experience. With many partners the person we speak to is relatively new in post and clearly only has a partial picture of who we are and what we could do with them. Pippa sends them briefing documents summarising these things. Generally, they compliment the summaries, appear to have read them, and talk positively about our future collaboration.

Our more switched-on partners have more specific expectations, and with them the job can be one of managing the disappointment that we only seem to be addressing some of their priorities. It’s tricky, but I’ve had plenty of experience both personally and professionally. Disappointing people, one way or another, is something I’ve been doing since around 1977 and an everyday aspect of life as a GP. So I’ve had time to get my story straight. Less about pointing out to people that their expectations were never entirely realistic, more about promising to try harder and use mistakes as learning opportunities. We’re all works in progress, after all.

And times are tough right now and set to get tougher as Winter sets in. Our recently departed Chancellor, with his kinder, gentler machine gun hand. What’s he like, eh? Only Oxbridge can give you that ironclad confidence. And there’s still a war on, rolling media updates. Dashcam footage of a car driving down what could be any street in any town, then the road ahead erupts in a fireball.

Times are always more tough if you already live close to the edge – hope may not be sufficient, but it’s necessary. Remember the boy you met last blog. Incredibly (what I mean is I’m hesitant to believe it) things seem a bit better for him right now. We went fishing last weekend, caught nothing and broke my beach caster but it was great. He’s in a supported living set up about 20 miles away, got a wee job, he’s so proud of being a working man, he seems hopeful, and as ever he’s kind, sweet and thoughtful.

“I don’t know what to get June for Christmas” he tells me in the car, “I thought maybe some flavoured vapes” – he remembers the last time he saw her.

“That’s a great idea” I say “but they’re a bit expensive and she’s trying to give them up. What about a box of chocolates – she loves a Malteser.”

Fishing is my number one therapeutic intervention for kids, because it teaches you most of the most important life lessons. Patience, the magnificence of nature (Chesil beach, the full moon rising over Abbotsbury, the red sun setting over the ragged cliffs of Lyme Bay), life and death and the fine line between them, the importance of hope and the reality of disappointment. The post fishing experience is special too, the long drive home when kids start to talk about the things they don’t normally talk about.

At ARC West we’re starting to talk about the next ARC, what it might look like, how it should work, what our priorities should be, how we can do something useful, how we can have the most impact. People talk so much guff about impact, but we all want to make a difference don’t we? It’s why we get up in the morning. When foster daughter two first started at the Fortune Centre she used to run away all the time, middle of the night, “the ponies will keep me safe, they talk to me”. Eventually the cops would find her and bring her back. Me and a staff member were trying to talk it through with her once, trying to understand her motivation.

“You know what gets me up in the morning” he told her, “The chance to make a difference. What gets you up in the morning?”

“My alarm clock” she said, no irony, just concrete thinking.

We’re thinking concretely about a future ARC and future priorities. Right now, I only hear about two priorities when I talk to my colleagues in the Integrated Care System. The first is the “front door” problem, which is also called the “back door” problem or the “no criteria to reside” problem. This used to be called the “bed-blocker” problem, I’ve just been in a meeting when somebody used that description and a public contributor complained.

“Do you know how crap it feels to be called a bed-blocker?”

Apologies predictably followed, with thanks for the important contribution. And I’m not sure that being seen as having no criteria to reside would feel any better, might find yourself on a one-way flight to Rwanda, after all.

Call it what you like it’s all the same problem. Too many people in expensive hospitals, with no objective need for expensive hospital care but no safe place to go. People like my Dad. This is the problem that leads to the ambulance queues and the chaos in A&E departments. The solution is communities that can care. What can we do as an ARC to help? Well one small but important thing is we can evaluate new models of community social care. It’s got to be a step on the way we need to go. Sabi is about to submit a programme grant application.

The second problem is part of the first problem, it’s called “workforce”. There aren’t enough people to provide the care that people need. You hear it suggested that technology will solve this problem. Look, I love technology, how on earth did I live over half my life without a smartphone and the interweb, having to make do with sex and drugs and rock’n’roll – and libraries. But my suspicion is that technology will only ever be part of the solution. Skill mix might help, more care from people who are slightly easier to train and cost a little less than doctors. But the truth is, everything that might work, might not work. Having bright ideas is easy, finding out if they’re really the right idea is hard. Our NIPP project (don’t ask me what NIPP stands for – nobody knows) is evaluating the role of Advanced Nurse Practitioners in primary care. It’s another small step.

The trouble is that so many people are just so pissed off. Even here in Hartcliffe, a great place and a great team, people are leaving. Another GP told us she was going this week. A great colleague who’s been a completely solid team player for nearly 10 years. She wants to spend more time with her family, I can’t blame her for a minute. And pay matters too, the only people who ever say, “there’s more to life than money” are people who’ve never had to worry about money. Our front desk crew, the frontline, have got bills to pay, families to feed. Stacey and Terri have both left, Stacey’s managing a garage, Terri’s gone back to college. Sam is the latest one to call it quits,

“You can’t leave us Sam” I wail to her one night, “Four hungry children and a crop in the field!”

I’m trying to make her feel guilty, which is completely unfair.

“Who could possibly be better to work with, who could love you more than we love you, what could anybody else offer you that we can’t offer you?”

“Two quid an hour more than you can offer me” says Sam.

I’ll miss her, so will the patients. One evening recently I saw someone who described the mental health crisis they were in the middle of as hitting them “like a fucking missile”. Drugs have serious limitations as a long-term solution to most of life’s more complicated problems, but I confess that I gave them a prescription. They looked so lost and lonely, not looking for trouble, just looking for love. I felt so useless when they started crying in the waiting room. Sam gave them a hug and a hankie, then a lift to the chemist and then home. Obviously, you’re not meant to do that, it’s against all the rules. Sam’s never been big on rules, she just can’t help being kind.

The patients miss Doug as well, some of them don’t even hide their disappointment when they get me instead. You do get the odd compliment. A woman kissed me once, she did ask me first, though didn’t give me time to say, “I’m sorry that wouldn’t be appropriate” before snogging me full on the mouth. Another patient told a colleague they thought I was great, adding, “can’t understand a word he says mind”. We’re invited to share patient compliments in our annual appraisal.

As I’ve said before, you need to have hope, or at least the hope of hope, you may as well give up otherwise. Yesterday we had a partnership strategy conference for our new Integrated Care System. They held it in Weston, at the pier, last time I was in that conference hall was in 2014. There’s a photo of me, foster daughter two and the then director of children’s services on the fridge door. We’re holding a certificate, celebrating foster daughter two’s achievements in the previous year. As always, those achievements sounded emphatically impressive, we made bloody sure of that. Foster parents can be just as competitive as any parents.

It was a beautiful Autumn day yesterday, the sort of day when even I couldn’t be grumpy as I walked down to the pier, through Grove Park under a brilliant blue sky. I sat at the back as usual, Sarah Purdy next to me. Sarah’s another GP, she directed ARC West for a year in between me and Jenny. The slide on the screen at the front of the room had a list of priorities, five of them, don’t have too many priorities we were advised. Some management consultant gave us the obligatory “Just So” story about Blockbuster – how they never saw Netflix coming. Don’t be a Blockbuster appeared to be the take home message, be prepared to embrace change. The other priorities were (I’ll paraphrase): reducing health inequality; childhood adversity; mental health; prevention and targeting need. We were invited to discuss these on our tables with a facilitator. I thought, “OK make one point” might as well make it the “data” point. My chance came when the talk turned to targeting need.

“To target need you need to be able to see it,” I said, trying not to sound like I was mansplaining Brexit to a nine-year-old with a mild to moderate intellectual disability – something I’ve done. “Then you need to be able to see what happens after you’ve targeted it.” Stunned silence that I took as broad agreement, no explicit dissent. Job done, can I go and visit SEE Monster now?

Next up was health inequalities. Old hands like me and Sarah could be forgiven for rolling our eyes. People have been talking about health inequalities since before I was conceived. They were busy burying the Black Report when I first went to university 41 years ago. Sorry if I’m a bit skeptical about the sincerity of the levelling up agenda. But in the spirit of hope I’ll park my doubts, and there was plenty of hope around the table, embodied in postcards with a quote from the King’s Fund:

“Following several decades during which the emphasis was on organisational autonomy, competition and the separation of commissioners and providers; Integrated Care Systems depend instead on collaboration.”

“Think of a recent example of when you really collaborated effectively?” we were asked. Everybody had the same answer, the same thing we were nostalgic for, the first three or four months of the pandemic. Amongst all that awfulness, that pure terror. In Hartcliffe we all assumed that some of us would die, seriously, it seemed inevitable, let’s get it now while we’ve still got a half chance of getting an ICU bed, we used to say to each other in late March. But in that chaos, there was common purpose. Sometimes a bit “Gung ho” but you know what that means in Chinese, “Work together”.

After I got back home, unusually, me and June had a night out in Bristol. We went to a book reading in the crypt under St Paul’s Church in Southville, lit by candles. The author was Mariana Enriquez, she’s Argentinian and she writes horror stories. I discovered her by accident down some internet rabbit hole in those early few months of the pandemic. “Horror stories” doesn’t really do her justice – stories about horror, think Lovecraft, Ramsey Campbell. Just read her, it could change your life. These days I’m only interested in art that might change my life. She talked for two hours, completely enthralling, then questions.

I asked her about the feeling of a nightmare many of her stories have – how did she do that. Despite sometimes claiming to speak Spanish, I thought best not to chance it. Last time I tried to say “nightmare” (pesadilla) in Spanish I got mixed up with the phonetically similar – when you’re drunk and extremely nervous – “breakfast” (desayuno). A Chilean trade unionist I was looking after was giving an account of her torture by Pinochet’s goons to a meeting of the Socialist Workers’ Party.

“My god, what a breakfast!” I said to her, she took it pretty well, all things considered.

Mariana’s English was flawless in any case and her response to the nightmare question was that it depended, sometimes she took acid, then applied that feeling to some standard horror tropes.

“You ever do that?” she asked, I think her tongue was slightly in her cheek.

“Umm” I said.

June jumped in to save my embarrassment, “He doesn’t get out much, he’s led a sheltered life.”

The next question was about the universal madness of teenage girls, its role as a creative force.

“Absolutely” said Marianna “I was completely crazy when I was a teenager.” June was nodding in vigorous agreement. I could see them being best friends 4Eva by the end of the evening.

We got a pile of books signed, Christmas sorted, then had a happy, hopeful conversation on the drive back to Weston. Young people are great we agreed, some of them kind of got lost in the 90s and noughties, got sidetracked by consumerism, apathy and just getting loaded. Getting loaded is what kids do, has been for as long as I’ve been around, can’t see that changing in my lifetime, so long as someone’s around to catch the few that fall, just getting loaded is a bit limited though. But kids today seem angry again, and so they should be. Like those schoolgirls in Iran, telling the cops to get lost, we’d rather die on our feet than live on our knees, Oh bondage, up yours.

I think maybe that should be our new ARC West motto. As much as change we should embrace our inner children.