21 January 2021
ARC West Director Professor John Macleod on what is giving him hope during this dark covid winter, including vaccines, the new ARC West Manager and wearing scrubs.
Right this minute there doesn’t seem much reason to be cheerful. I reckon even Ian Dury would struggle. Covid-19 case numbers have risen inexorably, the NHS is creaking, daily deaths have topped 1,000 – even more than the worst of April. “Only three lockdowns till next Christmas” goes the gallows humour. And it’s dark outside.
Remember the original “Mission Impossible”, the fizzing fuse, the self-destructing tape,
“Your mission, should you choose to accept it…”
“We need another blog, people need cheering up, we’re all miserable, do something.”
It’s OK, I know my place. ARC West is a family, and my role is essentially parental. I have parented teenagers so I know the drill: shut up, we’re talking; show me the money; sort it out now; under no circumstances dance.
Knowing your allocated role in life is one thing, knowing how to fulfil it is another. How on earth could I complete this impossible mission, today on the 44th of December 2020 when everything was so objectively awful? What could puncture the gloom in this gloomy setting? The physical characteristics of Hartcliffe Health Centre are as dispiriting as all the people who work there are utterly fantastic. The building reminds me most of a Central American police station (I worked briefly in El Salvador in the 80s) – the squat grey structure, the razor wire, the front of house staff in balaclavas with Armalites clutched to their stab vests (OK, not the Armalites – PPE now). Whenever we plead for more resources (like to fix the ever-leaking roof) we remind the NHS that we are the most deprived practice in England, South of Liverpool (sorry Liverpool, sorry Bradford, sorry Newcastle) and in the bottom 10 for children’s deprivation. It makes no difference; the roof still leaks.
I look to the endless spam in my inbox for hope. Sleaford Mods (ever the optimists) are planning to tour again, the Whisky Exchange (how on earth did they get my address??) want me to embrace “Try January” by sampling their reasonably priced single malt. The boundless ingenuity of free market capitalism, I might just take them up on that.
But as Camus says in La Peste
“stupidity has a knack of getting its way; as we should see if we were not always so much wrapped up in ourselves.”
He also says something much quoted recently about the importance of duty and just getting on with the work at hand. It’s the same point; gloomy introspection is all very well but there’s work to be done and it won’t do itself – so you better man up (or person up), put a smile on your face and get on with the job.
ARC West have spent the last year both getting on with the immediate job and discussing, iterating, co-creating and crystalising the coming job over the next nearly four years. We’re almost there, a workplan has emerged and we’ll be presenting it at our Showcase on 15 March. Between now and then the agenda of priority questions agreed by our theme-based Research Oversight Groups (ROGs) of stakeholders and our Research Advisory Panel (RAP) of senior academics and system leaders is being transformed into projects with our methodological theme leads and our wider group of public contributors (all our ROGs involve public contributors). This is mainly our post-pandemic workplan. Our blueprint for how we hope to help the health and care system “Build Back Better”, as President Biden likes to say (he’ll be President by the time you read this, assuming the fascists in fancy dress haven’t got another prank up their sleeves).
Our work to directly support the strategic response to the pandemic continues in parallel. Germ Defence has been rolled out nationally and we will be evaluating its impact mainly through looking at infection rates and care use in health records. Evaluation using electronic health records is also a large part of CoMMinS, Caroline Relton’s study on mitigating the impact of Covid in schools that both ARC West and our NIHR Health Protection Research Unit are collaborating on. And in RAPCI, Mairead Murphy and Jeremy Horwood’s joint NIHR SPCR/ARC co-production we used GP data to map the disruption to primary care caused by the pandemic, when in April remote consulting rose from 30% to 90%, emergency hospital admissions halved as did diagnoses of new conditions. We are now exploring whether this picture in the West was replicated nationally, and if it was what the impact was for patients, through our collaboration in Nishi Chaturvedi’s Longitudinal Health and Wealth, Covid-19 National Core Study.
All these projects are great examples of the exceptional potential of applied health informatics – the theme that ARC West are responsible for leading across all 15 ARCs. I mentioned in my last blog that we work with HDR UK in this context. On 10 December we held a joint workshop with HDR UK to consider applied informatics in the context of social care, rather than health care. This is something of a “Cinderella” space in applied research, though the current disaster in care homes and growing recognition of the additional vulnerability of already vulnerable children to the pandemic’s collateral damage has created some momentum to change this. Over 150 delegates took part in a great day and the presentations we heard are on the ARC West website. Our delegates were very patient with the teething problems of the flash new online conference platform we (in hindsight perhaps unwisely) decided to try for the first time. Note to self – stick to Zoom.
For me the abiding message of the day came from Debbie Keatley, an HDR UK public contributor. We use the term “routine” data to distinguish the information referred to from data explicitly collected for use in research as opposed to data whose research use is a secondary application. But this information is anything but “routine” to the person it relates to; it often reflects intimate aspects of their life, their adversities, their struggles, sometimes their death; suggesting this is “routine” can alienate people. To be honest I use the term “routine data” frequently but I’m now looking for an appropriate alternative. Administrative? I’m not sure that cuts it. I’m open to suggestions.
It’s also been satisfying in the past few weeks to see papers from some of my favourite CLAHRC projects finally emerge. As well as being fine examples of co-produced applied research, they are reminders of different times. IMPACT-PC where we handed over the management of common sexually transmitted infections diagnosed by GPs to specialist nurses at the end of a phone-line. Patients loved it, they thought it was great to talk about their STI to someone who had time and who seemed to know what they were talking about (as a GP, that stung!).
And DUSSK, co-produced with street sex workers struggling to escape the legacy of a lifetime’s trauma along with the life limiting impact of their current drug use. Nikki Jeal made DUSSK with women who were part of the One25 project, my involvement was completely peripheral. But DUSSK was close to my heart for another reason.
My introduction to the possibilities of improving health through partnership with people whose health was at stake but who found using conventional health services “challenging” came nearly 30 years ago in Edinburgh. A group of ex and current street sex workers in Leith had started an initiative they called the Centenary Project (because they got their start up grant from funds raised as part of the centenary of the Leith Womens’ Guild – about £100K; that’s a lot of jam and Dundee cake!). Their initial remit was to befriend women working the streets around Leith docks, to provide mutual aid and a safe space at their base – a flat in Henderson St. After about a year they decided they wanted to employ a doctor for one session a week, they looked hard for a woman doctor but couldn’t find one so, simply for reasons of lack of a suitable alternative, they employed me.
June Taylor was the formidable project coordinator in her tartan mini-kilt and eight-hole Dr Marten’s (it was 1992!). I had seen her on the telly, and in the Daily Record when it ran stories on the project always referring to her as “ex junkie, vice-girl” (for those of you who aren’t Scottish the Daily Record is like the Sun but without the commitment to quality journalism). June Taylor made it clear to me that I was on borrowed time and needn’t bother getting comfy. As soon as they found a female doctor, and that time couldn’t come soon enough as far as she was concerned, I’d be out the door. But in the meantime, with immense kindness and patience about my cluelessness (what do I know about sex work? In fact what do I know about anything), the women accepted me into their family, just as ARC West did 30 years later. I heard some of their stories, like how it feels to come home with your kids to find that someone has spray painted “AIDS slut” on the front door of your flat, and all the rest. And it took them nearly two years to find a female doctor who fitted into the family (like buses two came at once, the amazing Pauline Lynch and Charlotte Porter). So I stepped back, but during those two years I made some of the most enduring friendships of my lifetime, became godparent to children who still come and visit, even though I live 600 miles away. Oh, and I married June Taylor.
Nostalgia is perhaps inevitable at the moment; the present is so grim and the future so uncertain. But there is also light at what might be the end of the Covid tunnel. Part of the light is obviously the vaccines; I got my armful of Pfizer-Biontec mRNA super juice having been called at 30 minutes notice to a practice in Bedminster that had a spare on the shortest day of the year. Goodness knows when or if I’ll get a second dose since we moved away from evidence towards public health pragmatism (a move I’m all for) but already I’m feeling supersonic. This sense of invincibility is probably dangerous and mindful of that I’m still doing my lateral flow tests twice a week and logging the results on the gov.uk website.
But aside from the vaccines, Spring is on the way which ever since I stopped having to do exams at the end of May has always been my favourite season. And this Spring there are particular reasons to be cheerful. In my last blog I mentioned our general distress at the poaching of our manager (she whose name must never be mentioned, but whose face still disconcertingly appears in random places on our website, ready to be stumbled upon when one is casually searching for weblinks to illustrate one’s blog – it’s too painful, I need to have a word with our web editor) by HDR UK. But we have a new manager, and she’s one of the family. Pippa Craggs is manager of PReCePT, probably our most famous project, the one that other ARCs are most likely to have heard of and be really jealous of. Pippa is starting officially on 1 March, St David’s Day, the first day of Spring. She’s going to be fabulous, sometimes you just know that.
And on 4 March we’ve got our NIHR site visit, we’re not nervous in the slightest (!!!!). We know we’re wonderful, we’ve got a great story to tell, nothing can go wrong and if it does, we’ll create a distraction (Gene Feder and I will start a fight over the relative contributions of Proudhon and Kropotkin to anarcho-syndicalist theory and practice. I have an advantage, having seen him talk at the Free University in Glasgow. I once sent Noam Chomsky a smart-Alec letter making some arcane point about self-determination and power. At the time I thought it was very clever. Chomsky sent me back a polite postcard advising me to read Kropotkin’s Mutual Aid – wow, anybody who wants to get their head round co-production should do the same).
Did I mention that I work as a GP in Hartcliffe? I probably mention it too much, I can’t help it. Apart from the building which is rubbish, everything about working in Hartcliffe is so great, and it has an ARC connection – Jenny Donovan got me the job, her kid went to the same school as Dougal Darvill’s. As Roy Robertson was my old primary care guru, Dougal has been my new one, for the last 13 years. Faced with some apparently insolvable clinical conundrum? Don’t waste time googling it, just Dougal it! In primary care, including in Hartcliffe, the pandemic has precipitated change, mainly a suspension of prevention and active chronic disease management and a pivot away from face-to-face encounters towards remote contact. We described this change in RAPCI as I mentioned above. Much of these changes potentially lead to cost savings. Small wonder then that policy people and commissioners are now talking in terms of “beneficial change” – in fact this is the focus of a substantial new ARC/AHSN national initiative.
“We mustn’t go back to our bad old ways” goes the narrative.
“Actually, we’re feeling quite nostalgic for our bad old ways” goes the whispered response from exhausted frontline staff.
I am all for genuinely beneficial change. For me the most beneficial change of the pandemic has been the move to scrubs – I never, ever want to have to wear a suit to see a patient again. I never ever want to wake up at 5am on a freezing wet Wednesday and grapple with dilemmas like,
“What the hell am I going to wear? What’s clean??”
Scrubs are ace, I would live in scrubs. Now I just get up, grab my scrubs, stick on a pair of jeans and a t-shirt (if time drink coffee, brush teeth, shave in that order of priority), drive over the desolate Covid blasted landscape to work, change into scrubs, co-produce health with the coolest people on the planet, stick scrubs in washable bag, change back into jeans and t-shirt, drive home, throw scrubs still in bag into 60 degree wash cycle, collapse – job done!
That’s the theory in any case, practice can be more hazardous.
Last Wednesday I finished with my final patient and filed my final set of results around half past seven – phew!!
Took my scrubs off in my consulting room, stuck them in scrubs bag, unfortunately neglecting the crucial step of locking consulting room door.
I have always said that the true heroes of the pandemic are the real frontline key workers, the delivery drivers, the checkout staff – and obviously the cleaners. I’m not sure who was more surprised when she opened the door, me in my boxer shorts and nothing else or the cleaner, luckily in her full PPE. Nothing shocks a cleaner in Hartcliffe, they might as well have done three tours with special forces in Afghanistan, they’ve seen it all, they’ve got the thousand-yard stare. Having briefly checked me out from head to toe, my colleague’s only response was,
“Are you finished yet?” then as an afterthought, “Have you lost weight?”
Obviously, I haven’t lost weight. Despite years of 5 and 2 diets the last time I lost any substantial amount of weight (for recreational reasons best not gone into here) was between the ages of 18 and 23. But at that brief moment a rainbow appeared amongst the grey skies over Hartcliffe and I remembered, life is sometimes beautiful. It’s the little things that count.