8 October 2020
Do I feel lucky? That’s the question Harry Callaghan used to invite the hapless miscreant he was about to assassinate to consider as he loomed over them, .44 magnum in hand. What on earth did boys like me ever see in “Dirty Harry”? The question about luck however, is one I’ve been asking myself as we wander tentatively out of lockdown, masks on our faces, alcohol gel in our back pockets. Luck seems to be the only thing that might save us, as our Covid Spring turns slowly to Autumn and case numbers rise. But the coming of October also means that ARC West is one year old: happy birthday to us!
Last November Gene Feder, our implementation lead, and I went to a meeting in London. What different times. You could sit on a crowded train talking to colleagues; you could eat a finger buffet safely. Chris Whitty was on good form. Somebody asked the question that all ARC Directors wrestle with. How do you keep your academic partners onside when co-producing research in response to the needs of your local health and care system seldom gets you a paper in Nature Genetics? I can’t remember his exact words, but the gist of Chris’ response was, it may not get you an FMedSci but your grandchildren will respect you. Hear, hear, though I’ve no idea if my grandson David respects me. We were on holiday with him aged about 6 and in answer to a question he’d asked some guy, he replied “You better ask your Daddy about that”. David’s incredulous response was “He’s no mah Daddy, he’s mah Papa!!” – telling me as an aside “you don’t even look like a parent!”.
I wonder what Chris thinks of those carefree pre-pandemic days. Eleven months ago, when nobody had heard of Sars-Cov-2, he spoke to us about his hopes for the ARCs. One of these was that we would make better use of data. David Seymour from Health Data Research UK (HDR UK) was also at the meeting and invited the ARCs to work more closely with his organisation. As national lead for Applied Health Informatics we took up this invitation. In my last blog I told you about our interview for a Better Care partnership – the day after lockdown was announced. We got it and have started a programme of applied data science that brings together the best of ARC West, Pen ARC, the University of Bath, and the Bristol Biomedical Research Centre. In December we are jointly hosting a national workshop with HDR UK to showcase this and other work where it relates to priorities in social care – from the response to adverse childhood experiences to the need to make care homes safer. Sadly, there has been a downside to this new intimacy with David and his colleagues. Lara Edwards, our marvellous manager, is leaving us to manage HDR UK’s Data and Connectivity National Core Study. “It’s not you, it’s me” she tells us as she strides into the future never looking back. “Don’t go!” we plead plaintively “we can change”. But the world turns and ARC West sails on – good luck Lara!
I think by February this year, the last time that all the ARC Directors and Managers met face-to-face, most of us had realised that something bad was “in the post”. Despite this we were still able to joke about not shaking hands or hugging each other and I took a tube train from Paddington to Charing Cross noticing nobody was wearing a mask and wondering if perhaps they should be. Our first year workplan seemed to be going splendidly. Jenny Donovan, my predecessor, the woman who made ARC West and CLAHRC West before it and who gave me the opportunity to do this great if sometimes scary job, asked me how things were going. “Really well” I told her in a moment of uncharacteristic optimism (this ARC lark was a doddle; I mean how difficult could it be?). “If you ever think things are going really well it’s time to worry” Jenny told me. She was not wrong.
I wrote my last blog in April – just after the world had changed for ever, when people were still clapping for carers. But if anybody deserves a round of applause it is our team at ARC West. I am immensely proud how we’ve worked together since everything changed on the 23 March. I titled that last blog “Life during wartime”. People who’ve experienced real wars might see this as being in poor taste. I’m sorry, I didn’t mean to trivialise violent conflict. But if this last six months has, in some senses, been a war then I think it’s fair to say that ARC West have had a “good war”. Seventy per cent of our first year projects kept going and as well as that we met the immediate strategic needs of our system partners through our rapid response research service. We continued to formulate our work plan for years two to five with the coalition of stakeholders that contribute to our research oversight groups (ROGs) and we started to build some important collaborations within the ARC national priorities.
Based on our well-established reputation, entirely built by Zoe Trinder-Widdess, as the “A team” of CLAHRC/ARC communications, we applied to take on responsibility for national communications across the whole ARC network. This application, led by Zoe, was successful. We’ve since appointed Lauren Hoskin to join Zoe and Rachel Skerry in our comms team with a focus on the national picture. One of Lauren’s first jobs was to collate and highlight evidence of the response to Covid 19 across the 15 ARCs. The team continue to do a fantastic job.
Is all this boasting just virtue signalling? “Using words, actions, or symbols to indicate to other people that you are a good person or that you hold certain values”. I hope not, because this definition implies that the stuff boasted about has no real value beyond demonstrating virtue. I hope that what we do has value beyond that. I believe it has. Of course, value is a slippery construct. Demonstrating value in the context of applied health research requires evidence, typically evidence of a measurable change in a meaningful outcome. Not straightforward.
Consider the four pillars of ARC West – our four priority clinical themes. “Healthier Childhoods” is one of these, led by Esther Crawley. A key aim of our work in this theme is to make the future better for kids that have very difficult early lives. To discover and change the elements of this adversity that ruin their futures, to uncover insights about what makes them resilient. Having rich parents is surely an important protective factor – it’s not a panacea, some rich parents behave abominably towards their children, and it’s not easily amenable to manipulation through intervention. Another important protective factor is being lucky. My colleague George Davey Smith touched on this in his essay on “the gloomy prospect” (subtext “why epidemiology is generally a waste of time”). Milan Kundera called it the Unbearable Lightness of Being (read the book, skip the film). Sometimes it’s hard to be an epidemiologist but we persevere. Our workplan in Healthier Childhoods includes a project ambitiously titled “Making the business case for interventions in Adverse Childhood Experience”. In post-Covid austerity commissioners feel they need this evidence to convince sceptical finance departments to support future investment in services that pre-Covid seemed essential. So we need first to put a price on the risk of all the bad outcomes in later life we believe are attributable to childhood adversity, then we need to put a price on interventions with good evidence of modifying this risk. Hugh McLeod, our ace economist is on the case.
I think of some of my personal highlights of our first year – our greatest hits. Inevitably this selection is subjective and contestable – I’m bound to forget something, and others might disagree with my emphasis. I’ve already mentioned our Better Care partnership and our Covid-19 rapid response service. Then there’s our collaboration with the NIHR School for Primary Care Research – RAPCI led by Mairead Murphy and Jeremy Horwood – looking at how frontline primary care changed to fight the pandemic and the collateral effects of this for staff and patients. Loubaba Mamluk and Tim Jones produced a rapid review of evidence on the disproportionate impact of Covid-19 in BAME communities and the possible mediators of this. This work has since shaped the national strategic response. Our Mental Health and Evidence Synthesis teams (Paul Moran, James Nobles, Julian Higgins, Jelena Savovic and too many more to fit on a page) have conducted comprehensive “living” reviews of Covid-19 and psychological well-being – including suicide risk. Paul, Liz Hill and Lara Edwards are collaborating on NHS Check – a national multi-centre study led by Sir Simon Wessely at King’s looking at Covid-19’s impact on the mental health of care staff. Jo Kesten, Myles-Jay Linton along with Jenny Scott from Bath and colleagues from our NIHR HPRU and Bristol Drugs Project have undertaken LUCID-B, a study of the direct and collateral effects of Covid-19 in people who inject drugs. OCTAVIA, led by Sabi Redwood, is examining decisions around critical care escalation in the Covid-19 context. Sabi is also working with Jeremy Horwood, Russ Jago and Lucy Yardley on CoMMinS, Caroline Relton’s flagship UKRI study on keeping schools safe and teaching children during the pandemic. Lucy is also leading our national cross-ARC evaluation of her Germ Defence digital infection control intervention. What an incredible list!
I suppose it’s inevitable, given the inverse care law, that Covid-19 has hit people and communities whose lives were already hard, hardest. This is particularly true for vulnerable children. Esther Crawley, Stuart Logan and several of us involved in the Children and Maternity National Priorities Group summed up the issues in an editorial we wrote at the start of lockdown. But the dark Covid cloud has had some small silver linings.
Our foster daughter of 10 years loves horses. Despite being assured by many social workers that it was inconceivable that our local authority would fund it, we secured her a place at the Fortune Centre of Riding therapy three years ago. My wife June and I were sitting by the water in Argostoli harbour when we got the call on her mobile – we cried and hugged each other – to the bemusement of several Greek fishermen.
She finished her course this Summer, she’s 19 years old now and like most 19 year olds wants to be independent. She also wants to stay in the New Forest so she can still visit the Fortune Centre and be close to her beloved ponies, she wants to live with young people her own age, not old people like us. A year ago, this seemed an impossible dream. In January after completion of her adult needs assessment we started our search for somewhere that met her criteria. By March we were feeling increasingly despondent.
On 10 March we visited the last place on our list, a huge country house just outside Lyndhurst. We met the staff and some of the other young people who lived there. Immediately, we knew this was the place. Our Social Worker went pale when we broke the news and mumbled about needing to consider a “plan B” closer to our home and cheaper. Then lockdown happened, developing a plan B became impossible and our local authority agreed to fund “plan A”. We had been incredibly lucky.
At a socially distanced picnic in the New Forest we talked to our daughter about her possible future. She was uncertain, by then it was impossible for her to visit any potential new home in person, but staff took us on a zoom tour with their mobile phone. We got to what would be her bedroom, it looked spacious and she was invited to choose a new colour scheme to paint it in. The camera panned to a large bedroom window; eventually we could see that the window looked over the forest towards a paddock. And in the paddock, there was a horse.
All our futures are uncertain right now, but I am very excited about the next four years and have to hope we’re going to be OK! Stay lucky everyone.