Tuesday 25 August 2020

When will I see you again? - Diabetes care and the Pandemic

Six months and counting..... 

As we popped our Prosecco corks with the clock striking midnight last New Year’s Eve, none of us had any idea what 2020 had in store for us. We have now lived for half a year in a period of unprecedented collective anxiety for all but the diminishing number who remember the severe privations and genuine suffering of the Second World War. Our world as summer turns to autumn looks and feels shockingly different to that of last winter. The list of new words and concepts with which we have become familiar is lengthy, and we have all become accustomed to routines, behaviours and attitudes which would have seemed utterly alien to us on New Year’s Day 2020. 

What would I have thought of this selfie back in January?

Tens of thousands have died in the UK alone, and many, many more have suffered, either from the effects of the Covid-19 Virus itself or from secondary consequences such as delayed diagnosis, postponed or cancelled treatments and indeed subtle longer term psycho-social difficulties yet to be fully recognised or understood. 

It’s not exactly been the jolliest year of our lives, and as we enter autumn here in the UK, with the Virus better understood and to an extent better controlled than it was earlier in the year, we are nevertheless facing questions, anxieties and uncertainties well into the future. A life of carefree interaction with our fellow human beings seem a distant memory and an even more distant future prospect. 

For those of us living with other medical conditions like diabetes, there have been well-publicised extra layers of uncertainty, and I for one have found myself more concerned about my own welfare, more careful about my own actions and choices than at any time since my diagnosis almost 23 years ago. In many ways, we who live with diabetes have been very well-served: there has been wonderful support from healthcare professionals in the online diabetes community, who have transferred their habitual enthusiasm and energy to online versions of their normal activities; the diabetes charities have been excellent sources of information and encouragement, despite suffering from significant loss of income and of course the patient community has displayed mutual supportiveness and information-sharing as always. I have been thankful for the online connectivity which we now take for granted, and contacts made through the world of diabetes have been a source of friendship throughout these difficult months, for which I am enormously grateful. 

Before we feel too sorry for ourselves, it is worth pondering what a lockdown of similar extent and severity would have been like in the pre-internet days of the not-too-distant past: no WhatsApp groups, no video calls, no instant online sharing of information, memes and funny videos, no working from home, no remote learning. Even twenty years ago, that would have been the reality of a similar scale pandemic and lockdown. 

If nothing else, surely one of the positives of the pandemic will be to convince even the most grumpy luddites that the information age is an overwhelmingly good thing, and that smartphones, tablets and laptops are a modern-day blessing, a miraculous tool for social interaction and information sharing, whose obvious faults and disadvantages are not the fault of the medium itself, but rather of the human imperfections or evils of those who use them. 

I have taken great delight during the pandemic in chatting over the garden fence with my octogenarian next-door neighbour about stuff he has found on the internet, or how much he appreciated an online video consultation with his doctor. He recently told me that he had bought a Bluetooth speaker and had googled the origins of the word Bluetooth (a 10th Century Scandinavian King in case you’re wondering). I was also delighted to receive a Facebook friend request from another octogenarian neighbour who had signed up and stumbled across me on a neighbourhood group. I really hope that the pandemic will hasten the demise of the “digital divide”, not just in terms of the older generation but also in terms of those afflicted by poverty and deprivation. 

So the pandemic has certainly taught us to value the internet. 

Now I am an irrepressible optimist. It annoys those close to me at times, but I often genuinely find doom and gloom about stuff a greater burden than the stuff itself. And this is definitely true of the pandemic. I have become far more annoyed and frustrated about the epidemic of opinion from self-appointed experts than with the disease itself. So doom and gloom is not for me, and I am already starting to look for the good that can come out of this pandemic. It’s not easy, but that shouldn’t stop us all trying: I was moved to write this post having filled in a survey for Diabetes UK about my experience of diabetes care during the pandemic. 

Here’s the link if you haven’t seen it – a short and easy survey:

I must say that filling it in made me somewhat frustrated, not least because a few weeks ago I had attempted to get some information from my hospital concerning their plans for re-scheduling clinic appointments (my last was in early December), and I received a rather vague reply indicating that I was on a list for a re-scheduled appointment “in due course”. A follow-up enquiry about the potential use of video or telephone consultation was deflected in the classic bureaucratic manner “We are also looking into the option of using video consultation within our service however plans have not yet been finalised”, whilst my suggestion that they might consider using LibreView to share my data was ignored in a manner which suggested that I was proposing something truly subversive and revolutionary. 

Surely, diabetes care is a prime case for the rapid adoption of new ways of communicating and sharing that we have all taken on over the past six months. For a diabetes patient such as me, fortunate at the moment to be living well with Type One, a six monthly face-to-face at the hospital as well as an annual review with my GP is an unnecessary burden on the system, and arguably upon me. A five minute appointment with a phlebotomist at my GP could yield my HbA1c result, and, together with a look at my LibreView data, would form the basis of a discussion which could surely be just as effective remotely as it is in a hospital ten miles from my home. 

Now of course, there are multiple caveats. My own condition is, for now, good, but might not always be so, and there are aspects that cannot happen remotely. Nobody can check my feet, my injection sites, my eyes, and in many ways most importantly, my emotional welfare, over the phone or through a shadowy face on a screen. Some sort of triage could surely be applied to people with diabetes, such that those in most need would be seen face to face, whilst others would be seen remotely. And I am not proposing online only consultations: if we are seen six monthly, then surely an annual face-to-face, with an interim online in between, makes perfect sense. 

Above all, we must NEVER, in healthcare or elsewhere, allow on-screen interactions to replace face-to-face ones. Zoom, Facetime, Skype, WhatsApp or whatever are wonderful, but nothing can get near to replicating the multiple subtleties of human interaction: badly-lit faces in front of a bookshelf cannot convey body language, subtly raised eyebrows, non-verbal reactions, fear, anxiety, reluctant agreement, embarrassment. We are beautifully subtle creatures who thrive on our interactions with each other, and the human physiognomy is a truly wonderful and subtle thing. I for one am longing for a world in which I can once again see people in the real world, out from behind their masks and visors, or out from behind their webcams. I am very glad that I am retired from teaching, as I would have hated to teach from behind a mask, or to teach young people whose faces, whose reactions and responses are hidden by a piece of cloth. 

So please let’s try to take the best of what we have had to get used to during the pandemic, but also be sure to discard the worst as soon as it is safe to do so. I’ve had more than enough of zoom calls already. 

A Zoom Meeting of Diabuddies from across Europe and beyond

My enduring emotion is that of the Three Degrees song which forms the title of this post, and is a plea which applies to my healthcare team, just as much as to the many friends and acquaintances whom I am missing so much: When will I see you again?

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