22 April 2020
Hello everybody. I hope that you and your families are well and finding ways to navigate the current confusion and uncertainty. Today I’m reflecting on our extraordinary circumstances in my second blog post for ARC West.
Though our universities moved to home working some weeks ago now, things still feel busy in ARC West. Like most colleagues I’ve become much more familiar with the bewildering range of video-conferencing applications now available to support remote working. Inevitably this has been accompanied by privacy scare stories suggesting that some providers are not as careful with our data as they might be.
The University of Bristol tells us to stop using Zoom, although Health Data Research UK – UKRI’s flagship informatics collaborative – used it to interview us for a Better Care Partnership a few weeks ago. (We can’t tell you the outcome yet, though you could probably discover it with the help of a friendly hacker).
But seriously, it seems that notions around the relative importance of personal privacy versus public good will be one of the many things that are transformed by the COVID-19 crisis. Never has the need for integrated, analysable databases of routine information been more pressing, to allow public service providers to see and evaluate their interactions with citizens. Moreover, the geolocation data from the mobile phones we all carry may be an invaluable adjunct to effective contact tracing.
At ARC West, we have needed to adapt rapidly to our new reality. From hastily assembled workstations in less used corners of our homes we meet for weekly operational video-conferences. Day-to-day contact still happens over email, telephone and, at the last count, eight Slack channels.
Where feasible within lockdown, research projects are continuing, some of them having gained a new urgency (for example our work on the challenges and sensitivities around shared decision making on ventilation in ICU). Other projects are paused but hopefully will resume soon.
The prioritisation process continues, through which we decide with our partners and stakeholders on the research we will co-produce from October onwards. We do this through our Research Oversight Groups (ROGs) in each of our four themes: public health and prevention, mental health, integrated and optimal care and healthier childhoods.
All our ROGs were well on the way to consensus on priorities and the applied research projects associated with these when COVID-19 hit us. Probably most effected was our public health and prevention theme, led by Sara Blackmore and Russ Jago. Both are at the forefront of the fight against COVID, particularly Sara who is a local Director of Public Health. All our ROGs are inevitably heavily populated by people who are active on the frontline.
The additional challenge in public health and prevention is that many priorities will now change, at least in the short term. Since the job of the ARC is to be responsive to the needs of our local health and care system, some of our priorities need to change as well.
In other ROGs COVID has, if anything, amplified the priorities we already had. In our mental health theme, these were around responding effectively to the needs of people, particularly younger people, afflicted by anxiety, depression and addiction, many of whom were self-harming. Another priority was helping individuals whose psychological difficulties were significantly exacerbated by economic hardship and insecure employment. None of these difficulties seem likely to go away soon. Most of them will predictably get worse before they get better.
In our healthier childhoods theme, our emerging priorities were around effective ways to make life better for children facing adversity, particularly children on the edge of or looked after in the public care system. My wife and I have been foster carers for over 10 years and our experience of children’s social care has – to be honest – been mixed. We have been lucky to work with some amazingly caring and committed professionals but have also often despaired at a system that can appear only able to react to crises with interventions that have little basis in evidence.
Children’s social care and the support services around it have now moved almost exclusively to remote working. Even with the best will and the greatest effort it seems unrealistic to think that this can adequately meet complex needs. Paediatricians have highlighted the possible collateral damage of lockdown to children who are now presenting later to hospital with life threatening illness. The collateral damage to looked after and other vulnerable children may be less visible and immediate but no less catastrophic.
And the need to integrate and optimise our health and social care systems has never been more immediate. Hospitals are desperate to protect their capacity to respond to the need for specialist and intensive care generated by the COVID pandemic. They are therefore trying both to minimise admissions and expedite discharges. Both of these aims are crucially dependent on effective partnership between health and social care at a time when many adult social care workers feel forgotten and a tragedy is unfolding in care homes. These issues are very much on the agenda of our integrated and optimal care theme and were also a focus in our Better Care Partnership bid.
Around the time lockdown was announced Bristol, North Somerset and South Gloucestershire Clinical Commissioning Group (BNSSG CCG) contacted Jeremy Horwood, one of our team leads. They asked if in the coming weeks we could provide them with rapid evidence appraisals and analyses of routine data to support their strategic response to COVID-19.
Within days Jeremy , alongside ARC West Manager Lara Edwards and the rest of our wonderful admin team, had assembled a team of volunteer researchers from across our NIHR infrastructure in the West of England to respond to requests for help. We have publicised this offer to all CCGs and local authorities across our geography.
Requests are screened by the ARC West operations group, mainly to check that they don’t concern questions already considered by others such as the excellent group at the Centre for Evidence Based Medicine in Oxford. Requests are then distributed to researchers, and the final evidence summaries are posted on our special web page.
A week before lockdown was announced, ARC West decided to postpone our launch event scheduled for 24 April. I felt very sad about this. Planning for what I’m sure would have been a great day was well advanced and Louise Wood, Chris Whitty’s co-lead at the NIHR was due to come and speak to us. We hope to rearrange it for later in the year Hopefully by then we will have emerged into the light near the end of this dark tunnel.
Another slightly disconcerting aspect of our current new normal is the outpouring of love from the public to those of us who work in the NHS. When I trained as a GP in Edinburgh nearly 30 years ago, my trainer Roy Robertson – a genuine local hero in Muirhouse – told me that most patients viewed us as clueless incompetents with little understanding of the realities of their lives or the problems that they disproportionately endured. This was the North West Edinburgh described by Irvine Welsh in Trainspotting, blighted by an earlier epidemic of a deadly viral disease. Roy did concede that in most cases the contempt of our patients was benign and tempered by recognition that, in their daily struggle against a malevolent system, we were at least on their side and doing our best.
How different the situation today, when every Thursday evening at 8pm, applause for our carers ripples round the streets. I read recently in the paper that I’m even to be offered a free holiday, if I’m brass-necked enough to nominate myself for it. Much as a holiday would be nice, I don’t think that I deserve one any more (in fact, I probably deserve it much less) than the cleaners, the checkout and care home staff, the bus and delivery drivers and all the other underpaid and under-protected workers who are really on the front line.
Thank goodness some people have retained their sense of perspective. Last Thursday at around eight in the evening we had a phone call from a boy now in his late teens who we first met when he was seven. Since lockdown all respite care for looked after children has been suspended so we can’t see him though he phones us regularly. “What are you up to?” I asked him, “Nothing much – just chilling”. “Aren’t you outside clapping for carers?” I pulled his leg. He was obviously surprised at the suggestion, “Nah, we’ve got Walking Tall with the Rock on DVD!” I’m glad that at least one person has got their priorities right. Stay well everyone.