Thursday 12 November 2020

It's Getting Better: thoughts for World Diabetes Day 2020

November is Diabetes Awareness Month, and as happens every year in the first half of the month, leading up to World Diabetes Day on November 14th, there is a growing frenzy of activity and excitement in the online world of diabetes. This year, that online world is the only forum in which the diabetes community can interact to any extent, and so this frenzy and hyperactivity seem particularly intense. Moreover, we are approaching the centenary of the discovery of insulin therapy (January 11th 1922), so no doubt next year’s WDD celebrations will be even bigger and better, not least because we can all hope that celebrations will by then be back in the physical world, rather than the virtual one.

Amidst all the frenzy, it’s a good moment to ponder developments in the world of diabetes, in its treatment and care. In so doing it is impossible to avoid noting how much has changed in recent years, and difficult to avoid the conclusion that the pace of that change is accelerating.

My own thoughts at this time of the year are always shaped by the awareness that I am approaching another anniversary of my own diagnosis, my “diaversary”, which falls on December 19th, this year marking 23 years since I was joined for the second half of my journey through this world by my unwanted friend. Any reflections on what is going on in the diabetes world are necessarily shaped by thoughts on the passing of time, and the increasing longevity of my life with diabetes - I have lived around one third of my life, and more than half of my adult life, with diabetes.

So, in the words of the late, great David Bowie’s last big hit before his premature passing, Where are we now?

I find it very hard to resist being bullish in my response, not least given that healthcare in general is under unprecedented logistical and financial pressure from the global pandemic. In saying so, however, I must qualify it with the very significant caveat that my thoughts apply to those like me living in a prosperous country which provides free healthcare for all. I am painfully aware that any bullishness does not apply to much of the world, including parts of the world like the USA where the state’s prosperity should enable universal healthcare to be a reality. So the thoughts that follow are made in the full and somewhat guilt-ridden awareness of my own relative good fortune.

When I was diagnosed in 1997, diabetes care and therapy had already advanced significantly beyond what many of my friends who have lived with diabetes for far longer than me can remember. A good diabetes friend, of similar age to me but living with Type One since the age of 2, has lived from the days of testing by urine strips and injecting with large syringes, to nowadays using an insulin pump and a CGM. He keeps an impressive personal archive of some of the primitive-looking gadgetry that kept him alive in his early days.

My introduction to diabetes came when injection pens with pre-filled cartridges were fully established, and small electronic meters providing rapid and accurate figures on blood glucose level from a finger prick test had become the norm, albeit fairly recently. More importantly in some ways, I came in at a time when advances in insulin types were starting to give far greater flexibility by mirroring with increasing accuracy the workings of the pancreas. Within a year or two of my diagnosis, I had moved to the basal-bolus régime which is essentially the one that I follow to this day. So things were already pretty good for a Type One here in the UK, and I never at any time felt threatened by it; however, better days were to come!

I am in no doubt that the biggest technological advance in recent years has been the arrival of non-invasive blood glucose monitoring giving more than just a snapshot of levels, and giving it in such a way that it can be done unobtrusively, frequently and painlessly: I refer, of course, to low-cost continuous monitoring devices, and in particular to the FreeStyle Libre flash monitoring system. The advances in diabetes technology have been stunning, and are accelerating as they become cheaper in real terms: this mirrors the way that, in our everyday lives, we all now keep in our pockets a mini computer of infinitely greater power, capacity and capability than the lumbering desktop with its hefty CRT screen that sat on our desks back in 1997. 

Commercially available devices have in turn been the stimulus for creativity and amateur expertise which has enabled patients to drive progress towards closed loop systems, with the prospect of a widely available de-facto artificial pancreas now looking more achievable than the proverbial “ten years from now” cure.

Alongside medical technology, information and communication technology has also made an astounding difference to those of us living with diabetes. When I was diagnosed I felt very much “at the mercy” of diabetes, and therefore very reliant on the input of the doctors and nurses assigned to my care. 1997 was very much in the pre-internet age (I first went “online” in early 1998, and as such I was an early adopter of home computing at a time when the internet was seen by many as the province of nerds and teenagers). My knowledge of diabetes at diagnosis was minimal, and beyond what HCPs told me, my only source of information was the printed word in books and magazines. What a different world it is now, with our first port of call on a medical issue being, for better or worse, Dr Google. These days, a person newly diagnosed would be signposted to a vast amount of information, to websites, to YouTube videos, to blogs, to peer support groups and a whole lot more. The problem must be to decide which resource is good, which is bad and which is ugly.

However, I believe that an equally important change in recent years is not a matter of kit and technology, but rather a far less tangible change of attitude on the part of both those living with diabetes and those who care for them. The irony is that this, too, has been driven by technology. There are still some who decry the influence of the internet in general and social media in particular, but what strikes me in the context of diabetes is that people have used technology in a very human and personal way, and that it has built bridges and brought people together in a way that harnesses the best that technology has to offer with the best and simplest of human virtues: friendliness.

Back in 1997, I would never have believed how connected we were all destined to become. I would never have believed that I would be talking, during a global pandemic, to people all over the world in little boxes on my computer screen, or that I could be constantly conversing in real-time written messages with friends. These days, my best source of “breaking news” is my best diabuddy whom I only know because we both have diabetes and started talking about it on Twitter. When anything good or bad happens in the news, or in either of our lives, our first response is to message one another. Many other people with diabetes enjoy similar, relatively new, but close, friendships.

But it’s not just peer-to-peer: we in the UK are privileged to have an online diabetes community in which patients and healthcare professionals interact freely, safe in the knowledge that each has something equally important to bring to the relationship: lived experience on the part of the patient and clinical expertise on the part of the professional. I count myself blessed with the personal friendship of many HCPs whose initial connection to me was through the diabetes community.

The community has no leaders as such, but is led by many: I shall deliberately avoid mentioning names, but we all know that there are doctors, DSNs and pharmacists of national professional repute who freely share their expertise and time online, yet just as importantly they share their lives, their interests, their passions and much more from well beyond their professional lives. Likewise, we all know that there are people with diabetes - and parents of children with diabetes - who freely share the experience and know-how that comes from living with diabetes, yet also their own personalities, their lives, their passions and much more, again from well beyond their lives with diabetes. During the pandemic, we have seen individual initiatives, notably by the organisers of the weekly tweetchat, like Zoom quizzes and the Fantasy Football league, and also larger initiatives like the Art1st Project, run by a coalition of people with diabetes and healthcare professionals. What these have in common is that they are about the people, not the condition, and it is this generosity of spirit that has enabled the community to flourish despite the inevitable fragmentation that has resulted from its growth in numbers. Alongside the partnership between patients and HCPs, the diabetes charities, Diabetes UK, JDRF, and DRWF have also become part of the community, not least through the personal and personable engagement with patients by their staff and leaders.

The blend of timeless human virtues - kindness, sharing, listening - with technology has given us a world unrecognisable from that of only a decade or so ago. Spending so much time alone at home this year, as we have all been compelled to do, I have come quite close to feeling grateful to diabetes for giving me some of the best friends I have ever made. 

When we finally emerge into the post-Covid world - sooner rather than later, we hope - it will be in many ways different, but we can surely hope that the blend of technology-driven remote connectivity and the warm relationships that technology has help to foster will leave us with the best of both worlds.

I was going to entitle this post Where are we now, taken from that rather bleak but wonderful Bowie song referenced earlier, but given that the announcement of a breakthrough on a Covid-19 vaccine came after I had started writing it, but before I finished it, another song came into my head, and I prefer to leave that as my customary song title for this post: the uplifting 1969 classic by (Mama) Cass Elliot which speaks, I hope, of where we are heading in the pandemic, and in diabetes care: It’s Getting Better.

Happy World Diabetes Day, everyone! With thanks to all who are working so tirelessly to support people with diabetes.

People places and events from my world of Diabetes

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