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:

https://t.co/0z17jYg22v 

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?

We all stand together

This is my post for World Diabetes Day, and in keeping with my silly habit of using song titles for post titles, I have chosen a title from what many consider to be one of Paul McCartney's most forgettable ditties, We All Stand Together 

For what it's worth, I actually rather like this much-maligned song, and always did. And the cartoon is wonderful. Was it really 31 years ago? Yep, it was the autumn of 1984. Where did those years go?

Well, 31 years ago I was still 13 years from being diagnosed with diabetes. You never know what life has in store for you....

I told my diagnosis story in a previous post, so for this one I wanted to reflect a little on how things have changed in the almost 18 years that I have lived with the condition. 18 years is a long time: some of my friends from the online diabetes community, the GBDOC, were babes in arms when I fell victim to diabetes, a fact which also raises the  "you never know what's in store" thought.

I recently came across a book I bought at the time of diagnosis, gathering dust on a shelf by my bed, totally superseded by the wealth of information that's a click away on the internet. The book, entitled Diabetes, The Complete Guide and "recommended by the British Diabetic Association" was just about all I had other than information and leaflets from the hospital, and armed with it I set about rebuilding my life with my new friend and companion D. Looking at it now, it somehow seems older than it is.

Whilst I was never one to bury my head in the sand and refuse to discuss my condition, for most of the subsequent years, I lived pretty much alone with diabetes. Of course my immediate family had to get used to it and learn all about it (at the time of diagnosis, my children were 12, 10 and 7), and as a teacher I always made a point of talking to my pupils about it, but beyond that I didn't really want to talk about diabetes. My hospital clinic visits suggested that my fellow sufferers were  mainly elderly, large and suffering from varying degrees of infirmity. I used to sit at clinic in my work suit, shirt and tie surrounded by people whom I knew to have diabetes, but with whom I appeared to have little in common. Sorry, I've got to say it - I assume that they were mainly Type 2, and as a Type 1, I felt very different, and when I saw the consultant, he seemed to relish the fact that I seemed healthy and well. We would  chat about my work, football, life, the universe and everything...then at the end of the appointment, he would congratulate me on my good control, and off I'd go.

I joined what was then called the British Diabetic Association, which was shortly to be re-branded Diabetes UK, and their regional group pestered me for a bit with invitations to "support groups" in my area, but I was already busy enough at work without yet more evening meetings, and I didn't fancy spending even more time with the sort of people with whom I had to share a hospital waiting room. So as regards diabetes, I just kept myself to myself, most of the time, thankfully, with no major problems.

In the year of my diagnosis, computers in general and the internet in particular were still largely the province of nerds. I think that we acquired our first internet-connected family computer in early 1998, and we were fairly ahead of the game. We watched enthralled as that weird dial-up noise heralded the gradual appearance of.....a web page. Wow! We were thrilled to send, and even receive, these cool things called emails, some of them even with pictures attached.


But the internet was still really just a giant encyclopaedia,  and certainly not a means of communication. It's easy to forget how unconnected we all were just 18 years ago. I had got my first mobile phone in early 1997, and was regarded by friends as rather extravagant for having what was seen as a toy for businessmen. Texting was still unheard of.

But as we all now know, we were on the verge of unprecedented access to digital media, meaning that in little more than a decade, we all acquired not just the one family desktop PC, but very soon reached the stage where most families had use of several internet-connected devices, which were quickly to become our constant companions. That, surely, is the biggest and most significant change in how we live our lives from my lifetime, and it has all happened in the past 18 years or so. We are now all connected, via our phones, tablets and whatever else comes along, not just to the world, but most significantly, to each other. How did we ever manage before we could text our loved ones after even the simplest of journeys to say we've arrived safely? How did we arrange to meet up with our friends? What did we do when travelling by bus or train, when waiting at a bus stop or in any sort of queue? I recently had a conversation with an elderly lady who was next to me in a queue for diabetic eye screening. She had watched me for a bit as I scrolled through my Twitter feed and posted some sort of trivial observation and then, without a shred of disapproval or jealousy, said how she would love to have a clever phone like that and do what I was doing. I immediately stopped looking at my phone and had a nice chat with her, in which I tried to reassure her that there was nothing difficult about using a computer or a "clever" phone, and that there were courses to help people like her get onto the internet and learn to use a Smartphone. This conversation made me think, though, how lucky we are to be so connected, and what a boon this may be to my generation as we grow old. Surely, the care homes of the not-too-distant future will be full of old people sitting around in armchairs scrolling through social media and perhaps, as a result, feeling less isolated?

Because that, for me, is what social media has done for my relationship with diabetes. It has ended my sense of isolation. I honestly can't remember how and when I first saw something about diabetes on Twitter. I know I joined in June 2011 because my profile says so, but it wasn't until sometime later that I must have, somehow, stumbled across the GBDOC. I suspect I just typed the word "diabetes" as a search term.

What I know is that, thanks to Twitter and the GBDOC, I suddenly "met" lots of other people with diabetes, and lo and behold, they were just a random cross-section of society: young and not-so-young (not so many old, I have to say), male and female, every profession, every nationality even, all with one thing in common: an annoying and ever-present medical condition. The community has grown and prospered because it works not just for its main and stated purpose - to share information, ideas and experiences of living with diabetes - but also just as a group of friends. 

As I have observed elsewhere, the GBDOC is wonderfully and completely blind to status, age, gender, sexuality, ethnicity, nationality and anything else that potentially divides us. The most active members not only help and support each other with their diabetes, but also share much about all aspects of their lives. Pets seem to be a particular obsession, but there is always much more besides. In a recent Friday evening chat with some GBDOC twitter friends we likened it to a virtual pub, as we each sat at home with a well-deserved after-work glass of wine. What a lovely idea for the 21st century - a virtual pub where you chat to your friends from the comfort of your own armchair without worrying about what you look like, the noise from the jukebox or who is going to drive home! (yes, I know we shouldn't take that concept too far, or we'd never go out anywhere!)

More seriously, it is through the GBDOC that I have genuinely learned more about diabetes than I ever learned from healthcare professionals. I discovered the life-changing FreestyleLibre through the GBDOC, and as I am lucky enough to afford it, I have been able to monitor much better than ever before my blood glucose levels, leading to a sharp fall of my HBa1C at my last review.

I took great delight in telling my doctor about the Libre, which he had never heard of! So there you have it - the GBDOC knows more than a diabetes specialist GP! I have subsequently been the subject of a filmed advert for the FreeStyleLibre after the makers had seen me tweeting about it. Click on the link below to watch it:-

Adrian's Story

But what really makes the GBDOC community work is the fact that collectively, there is a clear intuitive understanding that there is so much more to our lives than diabetes. I met GBDOC friends in real life at the conference they organised in March 2015, and will do so again next year and it was great to discover that they were all remarkably like what their Twitter persona portrayed - friendly, open and supportive people. It was a memorable day.


However, we don't just spend time feeling sorry for ourselves about diabetes; we have become a community of friends. For example I met up with a fellow diabetic who follows a rival football team, Derby County, when they came to play my team, Bolton Wanderers.

We posted a lovely picture of ourselves, dressed in rival replica shirts but united by a medical condition.

I have also given professional advice in my area of expertise (university entrance) to GBDOC friends; and I lose count of the number of times I have seen or posted stories and pictures about pets belonging to me and my fellow diabetics. 

So as we mark World Diabetes Day, I want to say thank you to one or two people: the most obvious one is to the man whose birthday is now World Diabetes Day, Sir Frederick Banting, whose development of insulin therapy means that we are all alive and well. But secondly, to Professor Sir Tim Berners-Lee, whose invention of the world wide web, which he gifted to mankind rather than trying to make money from it, means that I can give, receive and enjoy the help, support and friendship of the GBDOC. 

Of course, we must also thank Paul Buchanan, founder of the GBDOC, for his initiative and ingenuity.

But above all, my thanks and love go out to all those friends on the GBDOC for their support and friendship. We do indeed All Stand Together.