The Way We Were

“Can it be that it was all so simple then? Or has time re-written every line? And if we had the chance to do it all again, tell me... Would we? Could we?”

Some favourite words of mine, from an oft-performed classic, sung most famously by two of the all-time great voices, Barbra Streisand and Gladys Knight. The latter version, from 1975, is a particular favourite of mine – listen here

There is no doubt that older age brings on wistfulness and nostalgia, although I am always amused that even teenagers are more than ready to reminisce about their younger days. Nostalgia is a universal human trait, hard to resist, yet often futile and even sometimes destructive. A recent short-lived social media craze of looking back at 2016 shows that we all tend to use these round number anniversaries to reminisce. 2016 was quite a year.

Wistful nostalgia certainly welled up in me when I saw a Google Photos memory from 10 years ago of the meet-up of people living with diabetes in Nottingham at the end of February 2016: a reminder that  a full decade has passed since what proved to be the zenith of the original GBDoc, the online community of people living with diabetes. For me, this reminder of what I was doing a decade ago brings an inevitable perspective on the evolution of the online diabetes community.

It was on February 27th 2016 that a gathering known as #PWDC2016 took place at an hotel in Nottingham: the second, and as it turned out final, real-world gathering of the original GBDoc, which had developed and flourished from around 2012, largely on Twitter - back in the days when Twitter was still a pleasant place to be. Does anyone think that the changes since it became X are for the better?

PWDC 2016 - 27th February 2016

GBDoc was, in those early years, a truly lovely community, where many of us for the first time interacted with others living with diabetes. Its founder and de facto leader intended it to be a community for people with all types of diabetes, but in practice it was and still is an overwhelmingly Type One community: it was the very real sense of camaraderie that is felt among those who feel themselves to be victims of the fickle finger of fate that was the driving force which made the community such a success. For all the commendable attempts to seek out common ground between all types of diabetes, it remains the case that for people living with Type One, by far the biggest irritant is when people fail to understand the difference between a randomly occurring autoimmune condition and a condition which is strongly connected to factors of lifestyle and diet. If the truth be told, I don’t feel “stigmatised” by such ignorance; I feel something more akin to an amused sense of superiority. A gathering with fellow Types Ones, whether just one or two others, or a whole roomful, remains a uniquely bonding experience.

So, a look back at 2016 is for me, and for others who were part of that community, a very real dose of nostalgia. Before turning to some thoughts on how that community has evolved, some observations about the risks of over-doing nostalgia:

False nostalgia for the so-called good old days is understandable, and often valid. But it can be at best futile, and at worst destructive. False nostalgia is a driving force for some of the most toxic and destructive trends in contemporary society, and has driven many perfectly well-meaning people to support and even promote populist politicians like Trump and Farage whose appeal is based on blaming all society’s ills on things that are “not like they used to be”. Simplistic solutions to complex problems have landed us, and future generations, with Brexit, Trump, cheap Chinese-made flags tied to lampposts by bits of plastic, and potentially - heaven forbid - a government led by the opportunistic and frankly repulsive Nigel Farage. Nostalgia is fine, but not if it leads to an assumption that the past was somehow better than today. It often wasn’t.

Change is everywhere, always has been and always will be. It is healthy to be open to change, and as I approach my 70’s I remain convinced that the world is still, all in all, a better place than it was when I was born and is indeed an improving place. The bad stuff is just more visible, and the toxic voices are just louder than they used to be.

I therefore try to resist the temptation to portray the GBDoc of 2012-17 as some kind of peer support nirvana. It wasn’t, and in any case it imploded spectacularly a year or so after that gathering in Nottingham when its prime mover lost the confidence of the community which he had done so much to create and promote, amidst accusations of a less than transparent blurring of the boundaries between his community work and his business interests.

Nevertheless, those early years should not be forgotten and dismissed, because what has been achieved through the existence of an identifiable patient community has been truly transformative, and for that alone, we all owe a debt of gratitude.

The GBDoc was never unique, but it certainly quickly evolved some features that have made it a largely benign and beneficial part of the internet. Aside from being commendably blind to background, wealth, age, gender, sexual orientation and whatever else so often divides people, its other main distinguishing feature from those early days was the way in which it brought together in an egalitarian spirit those living with diabetes and those whose job is to care for and support them, either as healthcare professionals, as charities, or as businesses selling diabetes technology. 

The openness and transparency of the early years of Twitter - free from the always problematic issue of designating people as “friends”, which was and still is a significant drawback of its original rival, Facebook - meant that anybody could interact with anybody in a concise and uncommitted manner. In terms of the GBDoc, this meant that healthcare professionals specialising in diabetes, leaders of the diabetes charities and the big pharma companies could far more easily see what those living with the condition were saying and thinking, and if they chose so to do, to interact with them.

Thus, from the earliest days of GBDoc, Partha Kar, originally “just” a consultant at a hospital in Portsmouth, started his journey to becoming the familiar mover and shaker that he is to this day simply by being open to talking online with ordinary people living with diabetes. Other consultants, GPs and DSNs also made themselves known and available and were as a result able much better to understand the needs and wishes of the patient community. The CEOs of the two big charities, Diabetes UK and (then) JDRF also became familiar names and faces in the online community, and tech companies - sometimes rather more obtusely – were able to read the community far better than could ever have been achieved with hand-picked focus groups. The medical technology companies were able to see unfolding in real time users’ reactions as products were launched on the UK market. 

My own personal journey with diabetes through the past decade leaves me feeling genuinely blessed to have got to know people from all these sectors of a genuinely broad online community. Among them are many with whom I remain in regular contact, and with whom I still chat all the time and occasionally meet up, these days often in contexts completely removed from the diabetes sphere. 

However, the community through which I got to know these people has now become fragmented, less active and far less visible. Its original home, Twitter, has lost the characteristics which made it such a fertile place for the community to develop, and whilst there remains, in theory at least, a diabetes online community on its successor ‘X’ and on other social media platforms, it has nothing like the reach or influence that it had a decade ago. Tweetchats - a term which now sounds archaic in the fast-moving world of social media - are still organised by some admirable volunteers, but whereas a decade ago the numbers actively participating, let alone silently lurking, were often many dozens, they are nowadays joined by no more than a handful of enthusiasts. The sense of a large community meeting up online has long since gone and looking at the questions and responses on a recent tweetchat, every topic under the sun has already been covered multiple times.

So, was it all for nothing? 

Was the GBDoc just a supernova, burning brightly then crashing to earth? Absolutely not.

Is there still life in the community? Absolutely, yes.

The GBDoc has evolved, rather than disappeared, and its often-mentioned fragmentation is just a reflection of its success and its consequent size. In those early days, online interaction was still in its relative infancy, and those who discovered fellow Type Ones on the internet were relatively few. It was therefore easy for a group of only a few hundred to become closely integrated, but as the word spread, it grew in numbers and hence in diversity, such that subgroups and so-called cliques inevitably formed. Fragmentation is not necessarily a bad thing; the term clique is a pejorative one easily thrown at those who are part of a group by those who are not. I prefer the more positive “find your tribe” principle, because this is what happened for me and, I suspect, many others as the GBDoc has developed: I got to know a large number of people, some of whom I had a lot in common with, others less so. And over time, I remained more in touch with the former than the latter. One close friendship with a fellow Type One has been for me a true and enduring gift.

Yet the overall community does still exist, and in a variety of ways, it proves its strength and resilience: 

For a start, a far larger community than the original GBDoc is very much present in the background of all the often noisy, crowded and even fractious online spaces, enabling instant connections to be made or re-made. It has the power to support and encourage campaigners and fundraisers, most recently in the case of John Story, the father of tragic Lyla, who died as a result of undiagnosed T1D. 

In so doing, he and others advocating on behalf of others are strongly supported by the diabetes charities, and in particular Breakthrough T1D and Diabetes UK, as well as by healthcare professionals whose connection to, and knowledge of, lived experience is so much greater thanks to over a decade of association with the all-important patient voice. As well as Partha Kar, already mentioned, many other HCPs have engaged with the community in a spirit of humility and learning, and foremost among them is the wonderful DSN Forum team, whose reach extends way beyond their day jobs thanks to an individual and collective mastery of social media.

The aforementioned online chats, facilitated and used by true enthusiasts, continue, and in so doing allow those new to T1D, or indeed just new to its online presence, to benefit from the camaraderie, peer support and information that can be such a huge help in living well with the condition.

And then there’s TAD; I make no apology for leaving till last what is - in my biased view – the best. TAD - Talking About Diabetes - also celebrates a decade anniversary in 2026, having first been held a few weeks after that second GBDoc get-together. 

The concept is simple, and enduringly popular: a real-world gathering of people living with Type One, as well as their friends and families, to hear and share stories of the challenges, successes, the highs and the lows of life with a uniquely frustrating condition. Over the years we have heard stories from people of all ages, some famous, some just ordinary folk, some achieving remarkable things despite their T1D, other just getting by. But all of them sharing a unique bond.

What stands out about TAD - and what makes me most proud to be part of its organising group - is the fact that it happens thanks to a true alliance of healthcare professionals, diabetes charities, tech companies and people with T1D. It was the brainchild of a team of consultants led by Partha Kar, and it thrives and prospers because of the generous sponsorship of the companies who develop, make and sell the kit which sustains us, the support of volunteers from the charities, and above all the commitment of four good friends from the patient community and a consultant diabetologist, Reza Zaidi, who goes way beyond the call of duty.

The sense of shared experience that comes from this once-a-year feeling of not being the odd one out is powerful one and reminds me every year of the truly life changing moments that I experienced a decade ago in Nottingham.

Living with Type One can be a frustrating and often lonely experience, and much has changed for the better in my own 28 years of it. However, it is hard to resist concluding that the pace of that change has accelerated over a timescale which neatly matches the growth of a Type One lived experience community.

So, whilst in some ways, my chosen title for this piece suggests nostalgia for a lost past, in many ways it celebrates the start of a process which is still very much in progress. The community has grown up and abandoned its original home on Twitter but remains a place where those who care more about others than themselves can and do make their own and others’ lives better.

I look forward to seeing many of them on July 11th in London, as we celebrate 10 years of TAD, and rather more than 10 years of the Type One Community. 

Just in case you’re reading this and haven’t heard of TAD, here’s the link to apply for the ballot for a place at TAD2026: 

https://forms.office.com/r/5fGVtc98ew 

Go Your Own Way

 

I developed Type One Diabetes just over 26 years ago, in December 1997. I have often said that it was a good moment to join that “club that nobody wants to join” in terms both of my own age and circumstances (I was aged 40, married with three children, settled in life and work) and in terms of diabetes management and treatment (beyond the days of glass syringes, primitive inaccurate blood tests etc.)

Yet even since 1997, things have got markedly better, with the past decade or so having brought two significant advances: The first a quantum leap forward in technological support for those living with the condition; the second the growth of diabetes peer support communities linked by social media networks.

The advances in diabetes technology were neatly highlighted by the nice coincidence that my most recent “diaversary” just before Christmas (19^th December, marking 26 years of the condition) coincided with the final announcement of NICE guidelines about the use of closed loop technology for those in the UK living with Type One, the culmination of a remarkably quick process which started with the arrival of the first mass market non-invasive glucose monitor - the FreeStyle Libre - ten years earlier. Those of us living with Type One under the care of the NHS are indeed blessed with a level of support for our condition which is the envy of the world. The leadership and accessibility of Partha Kar has been instrumental in making this happen, however much he protests that he is “just doing his job”

The growth of peer support fuelled by social media connectivity shows no sign of slowing down, and has achieved a good deal, albeit that the sheer numbers involved mean that it has lost its early intimacy and has inevitably led to a degree of empire building and thinly disguised rivalry between individuals and groups.

These two advances mean that nobody can deny that here in the UK, people living with Type One are well served by the healthcare system and by the community of people living with the condition who are keen to share experiences, expertise and friendship.

And yet…

There is increasingly a nagging feeling in my mind that I’m being left behind, a feeling complicated by the sense that I’m actually perfectly happy to be left behind. What’s going on? It doesn't quite make sense, so permit me to explain.

Forgive the self-analysis here, but in general terms, I like to believe that I am fairly adaptable to changing times. Although I grew up in the pre-digital age, I have embraced that revolution with appreciation rather than the resentment and bewilderment which I often see in others of my own age, let alone those older than me. I do not eulogise the “good old days”, but rather I positively enjoy and greatly appreciate the comfort and convenience of the world in which I am growing old. I spend way too much of my life glued to my phone, like the overgrown kid that I am. I am fully “digitised”

I therefore had no hesitation in taking up Abbott's groundbreaking FreeStyle Libre at the earliest opportunity, and in subsequently embracing its evolution into a de facto CGM using my smartphone rather than the reader. Moreover, I was among those singing the praises of this device from its earliest days thanks to my early adoption of the online diabetes community which coalesced from around 2012 onwards. It was the diabetes community that first alerted me to these advances in technology, and it remains a source of great pride to me that I played a small but significant part in the campaign to get this life-changing technology onto the NHS prescription tariff in 2017.

However, I now find myself being left behind as others embrace pumping for insulin delivery and closed loop systems to automate this process to a good extent. I feel a bit like the man who bought a top-of the range VHS video player in the late 1980s and refused to embrace DVDs, or the man who bought a stack of DVDs and CDs in the 1990s and now refuses to subscribe to Spotify or Netflix.

I am, by nature, a creature of habit with little taste for adventure and no thirst for the unknown. The facts about me speak for themselves: I’ve been married to the same woman for 40+ years; lived in the same town for 36 years; taught in the same school for 36 years; banked with the same bank since I left university; I’m now driving my 6^th successive Mitsubishi; I’ve been with 02 since it was BT Cellnet, firmly wedded to Android rather than Apple, and I feel guilty and disloyal whenever I am eventually persuaded to change energy supplier in search of a cheaper deal. I am inertia personified in some respects.

Small wonder, then, that I am perfectly happy with “just” my insulin pens: I know what I like and I like what I know could have been coined to describe me.

I have therefore watched with interest rather than envy as the Type One world has gone closed loop crazy. Social media timelines are filled with posts testifying to the life-changing effect of what some term an “artificial pancreas”, with screenshots of flat overnight blood sugar lines or of Strava maps telling the world that its author has been on a run freed from the need to fret about its effect on sugar levels. To be honest, these have started to become something of a bore.

And here I sit, armed only with my FreeStyle Libre and my ageing insulin pens, with a time in range of around 75%, an Hba1c of around 50 and no enduring sense that my life has been ruined by diabetes. Do I want an insulin pump? Do I want it to be linked to a CGM to take over the management of my diabetes?

The truthful answer is “I’m not at all sure I can be bothered”. I’ve got better things to do with my life than to learn the ins and outs, the tips and tricks of a pump when my own tried and tested “hit and hope” methodology continues to serve me well. Yes, I get hypos and hypers, but armed with a Libre I can and do correct with micro doses or snacks in a manner which works well for a largely home-based retired life. If I were still working, I’m pretty sure that I might think rather differently.

However I do often wonder why, if all this automation is supposed to be so liberating, it appears to occupy so much of peoples’ time and energy. I never see any posts by people - still the majority - using MDI, and I sense that’s at least in part because many of them, like me, prefer to just inject and get on with their lives. My strategy for living with diabetes has always been to keep it in the background where it belongs.

So am I opposed to the continued rollout of technology? Absolutely not. I firmly believe in “each to their own”, and I am well aware that there are many for whom a more automated approach is a godsend. And they are NOT all youngsters – I know many PWD of my age and older who swear by the life-changing benefits of looping.

Will I continue to resist the use of a pump and an HCL? I don’t know – ask me again every few years!

Do I think there are other issues, at least as urgent, arguably more, that perhaps should get the same level of effort, publicity and indeed funding that have driven the “rise of the machines”?

I most certainly do.

I’ll pick out three:

Firstly, I'd like to see the spread of non-invasive glucose monitoring on prescription to those living with Type Two diabetes. The phrase knowledge is power is often applied in a healthcare context, and despite the recent progress in linking CGM to insulin delivery, I still believe that knowing BG levels and their predicted direction of travel, and knowing what the effects of different foods and levels of exercise have on blood sugar levels provides for many the key to better understanding of, and hence better self-management of all types of diabetes.

Secondly, I'd like a reform and standardisation of the education given to people with diabetes at or soon after diagnosis. Another over-used cliché springs to mind - “education, education, education”, and I have a strong sense that there is huge variation on the availability, timing and delivery of education, and that the DAFNE and DESMOND models, with their somewhat rigid teachings, have been allowed to dominate to the exclusion of more streamlined models better suited to this age of busy lives and flexible working hours.

Thirdly, I would love to see a real and sustained investment in the understanding and treatment of the hitherto under-reported psychological aspects of living with such a burdensome and stigmatising condition. The recent publication of the parliamentary report into disordered eating among those living with Type One shone a light on this scandalously neglected issue. This one is close to my heart, as my best friend is among those affected and among those most engaged in the calls for better understanding and more integrated care, but it struck me very strongly how many other names and faces familiar to me from the online communities have been to some extent living with this debilitating and dangerous add-on to Type One.

So there we are: the outlook for people with Type One is vastly better today here in the UK than it was even 25 years ago, let alone a century ago when insulin therapy changed Type One from a death sentence to a manageable burden. Yet this situation brings its own challenges at a time of ever-increasing demands upon the limited resources of any healthcare system, the NHS more than any. I hope that we can continue to roll out pumps and loops to all who need or indeed want them, but at the same time, I hope that we in the UK will also count our blessings and make sure that other deserving, and in many cases more urgent, calls on scarce funds can be met.

I close by reiterating what is often said, but is so important: Your diabetes, your way. There’s enough factionalism out there, and this post is absolutely NOT intended to criticise those who have shown such drive and enthusiasm for the advance of technology, be they patient advocates or healthcare professionals. These people have been truly heroic and have achieved unimaginable progress in a remarkably short time.

But we must remember that, just as in everyday life where not everybody wants a smartphone, a smart TV, state-of-the art satnav and suchlike, not everyone wants their diabetes to be managed by technology. How many programmes on your washing machine do you actually use? How many apps on your smart TV do you completely ignore? And do you never get irritated by the constant bleeps and warnings, the sheer information overload, given by modern cars? Technology is wonderful, but can be too much of a good thing for some.

It's the same with diabetes technology: an insulin pump with closed loop is not much help if you live with diabulimia.

I am not extreme on this, but I do hope that other urgent needs of the diabetes community will not be overlooked or underfunded amidst the scramble for diabetes tech. Despite what the hashtag says, diabetes tech can wait - for some of us.

As the song (and my title of this post) says, Go Your own Way - and I’ll go mine.

You can't always get what you want

When I first started posting my thoughts as a blog, back in 2015, I started using song titles - or occasionally lines from song lyrics - as the title for each post. It happened almost by accident when I was writing my very first post, about the then new and very rare FreeStyle Libre blood glucose monitoring device: the words of a song came into my head, and I thought it would make a good title. That post - entitled What's Going On? - is still there, now of course very outdated, but in a very good way.

These days, it's often the other way round: a title or line comes into my brain as a result of something that's happening in the world, and thoughts start to swirl around in such a way that I end up expressing them in writing and usually publishing them on my little corner of the internet. Read on to find out how this title - You can't always get what you want - became a post.

My blog has always been about more than just diabetes, but the condition with which I live, and which has brought me so many friends, opportunities and experiences, remains a recurring theme, not least because the world of diabetes care and treatment has moved on so much over those six years. There's always much to talk about.

This week brought the announcement by NICE of proposed guidelines and a consultation on the future availability of closed loop systems for people living with Type One diabetes in England. It stimulated a frenzy of comment and opinion, ranging from excitement and gratitude to anger and resentment and all stops in between. Once again, I found myself somewhere between amused and dismayed by the speed with which people felt it necessary to broadcast their views to the online world. Not least when the announcement was of proposals, not policy, with an invitation to comment. An invitation to comment: online, privately, and thoughtfully, having read and considered the proposals.

We live in an age of instant and therefore necessarily less than reflective opinion, driven by the platform of social media where so many strive to be heard. By the time I'd read just a few of the torrent of responses, I had already started to feel that I must be a freakish loner in wanting to give the proposals some thought. Until I remembered that those expressing the most strident and immediate views are almost by definition a minority, and that tens of thousands of others are probably unaware of the announcement or too busy living their lives to be able to join the chorus of opinion. 

It’s the negativity that really gets me down. We've been here before, of course: 

I remember a taxi ride back into Central London in September 2017, after being interviewed live on Sky News on the day that FreeStyle Libre was added to the NHS tariff, and reading through dozens of negative comments about that decision, spiced with suggestions that the likes of me or indeed Partha Kar were paid by Abbott to promote this product. Most comments boiled down to “Yes, but what about...”, overlooking the universal truth that all progress, all change for the better, comes in stages, not overnight. Partha repeatedly used the “tip of the spear” analogy to restate his point that this was a marathon not a sprint, and that progress and evidence would generate further change, price reductions and hence wider benefit.

Then this time last year, we had a similar furore over the news that FreeStyle Libre 3 would not be as readily prescribed as Libre 2. Again, the misplaced sense of entitlement, and the consequent rage, was baffling.

After all, we're only 7 years on from the arrival of Libre, and progress has indeed been remarkable. Flash or CGM is now, with one or two shameful exceptions, the norm for people living with T1D in the UK. It has taken just five years from a fortunate few paying £100 a month for Libre 1 to everyone with T1D getting at least Libre 2 or other devices like Dexcom or Libre 3 according to need and at no cost at all to the patient.

So the other day, these wise words, from the Rolling Stones, came into my head:-

You can't always get what you want

You can't always get what you want

You can't always get what you want

But if you try sometime you'll find

You get what you need

Check out the song here - it was actually the B-side of their iconic 1969 hit Honky Tonk Women, but has achieved far greater fame and acclaim over the subsequent half century.

Why these words? Because we now have the prospect of pump with closed loop connection to CGM - a de facto artificial pancreas - for those who need and want it. Do we all want it? Possibly, but not necessarily. Do we all need it? Arguably, but at what cost relative to other demands on diabetes care and the NHS in general? Another huge step forward in diabetes care and treatment, but one that comes with a cost, and therefore with decisions to be made regarding who gets it and who doesn't. Hence the frenzy of excitement this week, but also a disappointing amount of negativity.

Surely, before we all start with the “What abouts” we should pause to reflect, and to keep a sense of proportion, fairness and context to this news. Loop and CGM for more than a favoured few is wonderful news, to be welcomed, celebrated and shared, not least by those who have lived through years of far more primitive methods of insulin delivery and blood glucose monitoring. But we must, now more than ever, remember that this massive improvement to care has a cost, a cost to us all as taxpayers, and that this cost must compete with other growing demands on NHS funds. Assessments of need and decisions, sometimes hard decisions, will have to be made, both theoretically and then in practice: there will be winners and losers. We must surely place need before want, not the other way round.

Take me: I have an Hba1c well below the proposed threshold of 8. I am doing fine on MDI, not least because I have the luxury of being retired and therefore having the time and headspace to devote to keeping my levels in reasonable range.  So whilst I might want management of my diabetes to be easier and more automated, do I need it? Right now, no, I don't, and I'd happily see my £6k of closed loop funding go into the pot to improve diabetes education courses, to increase HCP pay or to speed up cancer diagnosis.

 

I can think of many others living with diabetes whose need is greater than mine. Busy working people with no time to constantly check levels and correct; pregnant women and nursing mothers with 1001 other stresses and strains on mind and body; children and teenagers with raging hormones and lives to live, fun to be had and worries to be addressed; older people with additional mental or physical disabilities or challenges on top of diabetes. The list goes on. I even happen to think that the need of basic flash monitoring for many living with Type Two is greater than my need for a pump and a loop. If we think hard and selflessly, and with due regard to financial realities, the need of others may well be greater than our own want. 

So before I start sabotaging my own blood sugar levels in order to raise my Hba1c to above 8, so as to qualify for a pump, I shall gladly stand back, rejoice in the progress of recent years, thank those who have driven it, and remember that as so often in life, what we need is often considerably less than what we want.

Jagger and Richards wrote some very wise words as well as some of the greatest ever riffs....

Everybody Wants to be a Cat - or maybe not

Everybody wants to be a Cat - a Disney favourite from The Aristocats, loved by successive generations, and rightly so. A great song, a classic animated sequence, but is it true? Does everybody want to be a cat? Of course not, but it works well as a title for some thoughts on how those of us with a hidden medical condition portray it, both in the real world and online.

It is often said that cats are good - too good perhaps - at hiding their symptoms. It’s a survival strategy for a solitary species, as opposed to those who live in groups, herds, packs or other groupings. To show weakness is to encourage predators, such that the cat that walks alone prefers to keep its troubles, pains and discomforts private - a poorly cat will often be found hiding somewhere as if hoping nobody will notice. However, those species which live in groups may make more of a fuss, perhaps even looking for sympathy with the proverbial hangdog expression. We human beings, of course, have a choice, and according to our personality type, we may react to illness or disability by quietly withdrawing from interactions with others, or by making it something about which we are loud and proud, a dominant or even defining part of our persona.

So it is with diabetes, and with the growth of social media-based communities such as #GBDoc, a more visible divide has become apparent between those who portray their diabetes as a defining part of their identity, and in many cases a burden to be borne; and on the other side those who portray it as a nuisance alongside many other nuisances in life, but not something which they will allow to dominate their thoughts, words and deeds.

Social media has brought these contrasting attitudes into clearer focus. Some accounts of people living with diabetes flaunt their condition with pride and defiance, detailing their every success or failure, sometimes railing against the curse of T1D, and maybe raging against society's ignorance, or health care professionals' insensitive ignorance. On Twitter, these people are often those who choose a user name featuring a reference to diabetes and have a profile picture or bio that leaves nobody in any doubt that T1D is a big deal for them.

Other social media accounts of people living with diabetes carry little or no clue to their owner's medical condition. The giveaway is often just whom they follow or friend, or maybe just a passing reference in their bio. Their feed may well be about anything but diabetes, or just an occasional reference to it. Their Twitter name is less likely to reference diabetes.

To pursue the animal analogy, the former group are the diabetes pack animals, and are likely to talk frequently about their diabetes, both in real life and online, whereas the latter group are the solitary creatures, the cats if you like, who prefer to keep their condition private and who consequently seldom draw attention to it. Like most divisions, it’s not binary, and most of us have a nuanced attitude, sometimes wanting the world to know that we live with this damn thing and sometimes wanting nobody to know.  And above all, there are no rights and wrongs - just differences. However, my sense is that nearly all people living with diabetes of any type tend towards one type or the other. So which am I? A cat or a dog?

Well I am very much a cat. No surprise there, given my lifelong love of cats, so this post is about being a cat - hiding an already hidden condition.

Today is my diaversary. It was at 5pm on this day in 1997 that I went to see my GP, alarmed by a sudden recurrence of symptoms after I'd recovered from a week in bed with ‘flu. She had asked me to bring a urine sample and I can still picture her concerned and somewhat puzzled face as she told me that it revealed very high sugar levels, and probably diabetes.

I've told the story many times: it actually took several weeks for me to be diagnosed as Type One; back in 1997 it was still widely believed that Type One very rarely came on in adults: we now know very much otherwise.

Twenty Five years. A quarter century. One third of the average male lifetime. Most significantly for me, more than half of my adult life. So it's a day for much reflection, and indeed a blog post. There's much to think over, and whilst in many ways that dark and chilly December evening when I was told that life-changing news remains very clear in my mind, in other ways it seems like a very different life in a very different world.

Over those twenty five years, my attitude to diabetes has varied, and in particular the level of noise that I make about it, has varied due to circumstances as much as anything, but overall I have always tended towards saying less rather than more. As mentioned above, in diabetes as in all else, I want to be a cat.

Over the first 16 years or so, through very much the peak of my working career, diabetes was firmly in the background of my life, my concerns and my interactions with others. My diagnosis came at the end of a week off work confined to bed with ‘flu, but that was the last day off for sickness between then (1997) and my retirement 20 years later. (Other than routine appointments). So living with Type 1 had no impact whatsoever on my working life, indeed less than four months after diagnosis I was leading a group of 45 teenaged schoolchildren on a week-long school trip to France, as I had done for years before and continued to do for years afterwards. I remained the same busy person that I had been before T1D came to join me on my journey through life, and I often reacted with wry amusement rather than boiling anger as I watched others - notably work colleagues - moan about how busy and tired they were, or how much they were struggling with whatever short-lived ailment was troubling them. Very occasionally, I would drop the T1D bomb into a conversation or situation, as for example when a colleague was planning a day of interviews in which I was involved, and he said to me “It’s going to be a full-on day, with no time for eating” When I gently suggested that I would have an issue with that, he sheepishly remembered and re-jigged the schedule a little.

Outside work and home life, I also avoided diabetes and anything other than strictly necessary talking about it. I joined the British Diabetic Association on diagnosis (sounds so archaic now, but that’s what Diabetes UK was still called back then), and then ignored a series of letter invitations to local group meetings, not least because the subjects of their meetings were always about low-carb eating and getting more exercise, a clear sign that this was predominantly if not exclusively frequented by people living with Type 2.

However, the world of diabetes care and management was on the threshold of very significant change at the time of my diagnosis, and has come a long, long way in those years - as those whose lives with Type 1 predate mine will readily attest. Whilst by 1997 we had already reached the era of disposable pens and needles and electronic blood glucose meters, we were still two decades from the near universal availability of non-invasive glucose monitoring, and indeed the rapid advance in the availability and use of lightweight insulin pumps and closed loop technology. Yet the Rise of the Machines was already under way by the time I joined the ranks of the pancreatically challenged, and although I am not among those who are desperate to have the benefits of an insulin pump rather than MDI, I have from the very start been convinced that the quantum leap has been the ability to measure blood glucose levels without finger pricking: I was one of the earliest adopters of FreeStyle Libre back in 2015, and with Libre 2 now the norm, I am free from the fear of unforeseen hypos which was a genuine worry for me for the first 20 years or so. I was fortunate enough recently to be given a two week trial of Libre 3*, and whilst I remain unconvinced of whether I need or want a full CGM to remind me every minute of every day what my levels are, I can well see that this latest version is a state of the art which will be welcome by many and will sooner or later end up as the norm.

Equally striking when comparing 1997 and 2022 is the impact of the revolutionary advances in connectivity brought about by the internet. The birth of the World Wide Web is rightly quoted as 1992, but it was not until the late 90s that the internet started to reach ordinary homes on a large scale. We got our first internet connected PC in early 1998, but at first the internet was really just a giant online library. Emails were there from the start, but they were really just instant letters. The notion of real-time “conversations” with friends and family across the world would have seemed fanciful, and for me, any sense that ICT and the web would be of any significant connection to my new condition would have seemed very odd.

Yet for me, like many others, it was online connectivity that brought me out of my diabetes closet and connected me for the first time with fellow Type Ones. It’s a story that I have shared before, for example here and I have no hesitation in saying that connecting with others living with Type 1 was a life-changing move, which has brought me connection with 100s, friendship with dozens and a close and lasting bond with a few.

And yes, online diabetes connections and friendships are all about the sharing, and therefore only really of any value if those involved are prepared to talk about their condition, at least in some small way. From around 2013 onwards, I did indeed start talking about diabetes with others, and as a result became aware of the rapid advances in diabetes care and technology that were at that time starting to proliferate.

And yet……

I remain a cat. I remain a man of relatively few words in any setting, real world or online, and especially in the context of diabetes. My regular social media feeds only occasionally feature diabetes content, and my Facebook is a largely diabetes-free space. I sometimes think I should be more vocal, more of an “awareness raiser” or even a so-called advocate, but my heart just isn’t in it. Others clearly feel more strongly about it, and have more to say, whereas for me, the core of my relationship with this lifelong condition is that it is a nuisance, rather than a burden, that I will not allow to take over my life. To rant and rave about it seems to me to be a largely futile exercise, in which I would either be preaching to the converted or risk becoming a bore.

I am enormously grateful to and hugely respectful of those who define their persona so much by diabetes. In so doing, they are being generous and beneficial to others: we would not be nearly so far down the road to accessible diabetes technology for all according to their needs and wishes, nor would we have anything near the levels of camaraderie and peer support that we enjoy, without the efforts of those for whom diabetes is a big deal.

I certainly have no wish or intention to shy away from the diabetes community, indeed I interact with others living with Type 1 every day, and my best friend is a fellow Type 1. Yet outside the world of the diabetes community, I seldom if ever remind others of what I live with. Sometimes to my cost.

So when it comes to sharing my condition, I am a cat, whilst gladly accepting that not everybody wants to be a cat. I conclude this “Silver Diaversary” piece with a sincere thank you to all the individuals and organisations whom I have encountered as a result of that life-changing diagnosis twenty five years ago: healthcare professionals, diabetes charities, medical tech companies and above all diabuddies. I may be a cat, but as all cat lovers know, our feline friends do actually crave and appreciate company and attention. They're sometimes just too stubborn to admit it....

Illustrations? Well it had to be a throwback to the days when "#OfGBDoc" was a thing. This was a collage of cats belonging to GBDdoc folk which I made back in 2017/18. 

I am aware that some of those kitties are no longer with us, so I hope that the memories are warm and not too sad.

*  #ad #sponsored: I was given a FreeStyle Libre 3 sensor free of charge for evaluation purposes. The opinions in this post are my own and were not influenced or reviewed by Abbott.

"I want it all....I want it now" - or should patients be patient?

 

I have been a little saddened to see some of the frantic reactions in the instant world of social media to the news that the latest version of the Freestyle Libre monitoring system - Libre 3 - is unlikely be automatically available on NHS prescription to all living with Type One Diabetes in the UK.

It’s perhaps inevitable, given that we have been, quite frankly, spoilt by the rapid advances in diabetes management over the past five years or so, thanks in no small part to the team led by the indefatigable Partha Kar, whose enthusiasm and openness on social media has driven so much positive change.

Those expressing dismay that progress from Libre 2 to Libre 3 is not automatic should perhaps take a moment to think back just six years to the start of 2016 in the world of diabetes. It was a very different world: insulin pump therapy was still widely regarded as something mainly for kids or for those who had "failed" with MDI; looping technology was a somewhat subversive subculture in the hands of a of a few tech-savvy enthusiasts; very few people had even heard of the FreeStyle Libre - the overwhelming majority of us were still drawing blood from our battered and bruised fingers for an occasional snapshot of how our glucose levels were responding to the insulin we had put in a few hours previously; and the online diabetes peer-support community was a still very small group of social media users, not the vast and diverse body that it is today.

Six years on, things are very different: Access to pumps and to looping technology has grown significantly and is being trialled on the NHS with the likely prospect of greatly increased availability in the not-too-distant future, and the FreeStyle Libre (Flash version) is not far from being standard issue to all with Type One and soon for some with Type Two. Alongside this, and to a good extent the reason for all this progress, an online-based community of patients, enthusiastic healthcare professionals and diabetes charities continues to bring together and support those living with diabetes in a way which would have seemed pure fantasy even at the time of my diagnosis at the dawn of the internet age in 1997.

Compared to many living with Type One, I am relatively new to the condition. For those - and there are many - who have lived with Type One for half a century or more, the difference in how their condition is treated and managed is extraordinary - take a look at this article by my friend Peter Davies, for example. Recent years, even recent months and weeks have been interesting and exciting, and despite the continuing challenges of living with the condition, not least during these past two years of a global pandemic, we have much to be grateful for, and many reasons to be optimistic about the future.

Of course the biggest change was a century ago. Tomorrow, January 11^th 2022, marks the centenary of the first use of insulin therapy by the team led by Sir Frederick Banting in Canada - a cause for celebration which has already been much talked and written about, and which is rightly commemorated in the special edition 50p coin which many of us have bought or received as a gift in recent weeks.

As I never tire of saying, in most parts of the prosperous Western world of 2022, we are lucky compared to our forebears of only a few generations ago and indeed the millions living in countries where access to the insulin and monitoring technology on which we rely is not the same as that which we take for granted.

I therefore cannot help but feel that the somewhat grasping reaction to the news of the imminent arrival of Libre 3 to the UK represents something of a loss of perspective and a lack of gratitude for where we already are. For a start, as Partha rightly and politely reminded the online community on Friday, we are still in the period of consultation regarding access to Libre 3. The expectation is that it will NOT be an automatic entitlement to all living with Type One, and it is this revelation which has caused all the furore. However, this should not come as a surprise to those who have really read and thought about the guidelines revealed and warmly welcomed as recently as November, which stated that people with Type One would be entitled to Flash OR CGM according to individual need. Libre 1 and 2 are flash, but Libre 3 is a CGM, and that distinction is important, perhaps inevitably clouded by the use of the same brand name with the number 3 after it.

My reaction is to agree with this distinction. At present, I neither want nor need a real-time CGM: non-invasive monitoring which tells us the direction of travel of glucose levels was the quantum leap, and Libre 2 was another big leap from Libre 1 which for me ended the worry of night-time hypos. That’ll do me for now, and I’d rather leave NHS funding to those who need CGM more than me, such as children, those with no hypo awareness or the very old. And indeed for access to Flash for those living with Type Two, who could benefit every bit as much as we Type Ones have done.

I am lucky that I have good hypo awareness, and in general terms I usually have a pretty good idea of what my BG is, so constant BG information from a CGM is for me an unwanted intrusion, indeed a reminder of a condition in which I am not actually very interested and which I prefer to keep in the background of my life: CGM is TMI for me and there is  definitely such a thing as too much information about blood sugar levels.

So for now, I agree with the distinction between Flash and CGM, and for many, including me, the former is at present more than sufficient. Others may feel differently, and it might inevitably lead to talk of differing interpretations of "complex management needs", and so take us down the road of "postcode lottery" as to who gets it and who doesn't, or that those who are more vocal, pushy, well-informed or privileged may be more likely to qualify.

I speak, of course, as someone who uses MDI (we are still very much the majority) and who is - for now - perfectly happy with it, but if the numbers using a pump and closed loops starts to grow significantly as a result of recent changes and trials, the demand for a CGM may start to increase. But that’s one for the future.

Technology is a wonderful thing, and I am lifelong technophile. But it has its limits, and there are already many examples in everyday life where I am not alone in finding that the constant need for an upgrade sometimes blinds us to the virtues of tried and trusted simpler technology. Cars, satnavs, smart TVs, smartphones, washing machines, tumble driers have all arguably become so smart that many of us choose to ignore many of the features that we have paid for. The “upgrade” culture which is forced upon us has its downsides, and I for one often prefer to wait and see before jumping on board with the latest technology craze.

I want it all...I want it now sang Queen in one of their less memorable songs, an anthem to greed that I never particularly warmed to, and the reaction to the availability of Libre 3 has reminded me of that song and makes it a good title to this post.

Perhaps now is a moment when access to diabetes technology should be driven by need not greed. We have come a long way in a short time, and sometimes patients need to be patient.

Appendix: for reference, here are links to the current consultation documents via NICE:

TYPE 1 Diabetes in Adults: 

https://www.nice.org.uk/guidance/indevelopment/gid-ng10265

TYPE 2 Diabetes in Adults:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10264

TYPE 1 and 2 Diabetes in Children & Young People:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10266

Always on My Mind: the relentless reality of life with T1D

It’s coming up to my diaversary: December 19^th 1997 was the day on which I went to my GP for a hurriedly-arranged end-of-day appointment to investigate a urinary infection following a very bad dose of ‘flu, only to be told that I had very high blood sugar levels, indicative of diabetes. Within a few weeks, I was inducted into the world of injections, testing and, well, you know the rest…

It’s a story I’ve told more than once before on this blog and on social media, not least at previous diaversaries, so a simple recycling of my diagnosis story is neither appropriate nor necessary here.

However, diaversaries always stimulate reflection, and over the months of reduced activity and increased thinking time brought on by the pandemic, I am increasingly drawn towards the far-from-original narrative that the worst thing about Type One Diabetes is the sheer permanence and omnipresence of it. For me, that means towards a quarter century - over one third of my entire life and over half of my adult life - now lived with the seldom severe, yet ever-present burden of the condition. Just because we don’t look unwell, and just because (in most cases) we don’t constantly go on about it, doesn’t mean that we are fine with it. I still occasionally come across people who think I have “got better” from my unfortunate illness back in 1997.

My T1D Footprint from JDRF

My thoughts on this aspect have been brought on in part by a growing sense of disappointment with the latest portrayal of diabetes in the media. Six months ago a character in the TV soap Coronation Street, 17-year-old Summer Spellman, played by Harriet Bibby was diagnosed with Type One in a story which gained much attention on diabetes social media, and which seemed at the time to be commendably well-researched by the scriptwriters and producers of the long-running soap. Much was made of the fact that the writers and actors had spoken with diabetes charities, medical experts and most importantly people living with Type One to ensure that the diagnosis story was told in a realistic and relatable manner. So far, so good, and well done to Harriet for representing the condition so well - the picture below captures what will be a familiar memory for many readers.

Summer Spellman in hospital after her diagnosis,
June 2021

As a longstanding Corrie fan, I was pleased to see that the scriptwriters had chosen to use diabetes as a storyline. However, whenever diabetes rears its head in this way, I always sense that the reality of living with T1D, and therefore of portraying it in a TV drama, is actually not interesting or dramatic enough in the longer term. The result is that scriptwriters either forget the story altogether, or use it as the basis for something more exciting, but frankly unlikely. Such is TV drama.

Summer is not the first Corrie character to develop T1D, and a previous storyline illustrates the above point rather well: back in 2003, another young woman in the soap, Katy Harris, was also diagnosed with Type One, and like many TV scriptwriters, the then Corrie team saw in our lifelong and potentially fatal condition the potential for good dramatic material, rather than simply demonstrating what thousands of ordinary people live with. Soon after her diagnosis, Katy embarked on an affair with her neighbour Martin Platt, a nurse 20 years her senior who was helping her come to terms with the burden of her condition, but took this help rather too far. As inevitably happens in soaps (where conception seems remarkably easy) she immediately became pregnant and in the mess that ensued she ended up killing her own father and then herself. As you do.

Corrie's previous T1D character, Katy Harris,
with her ill-advised love-interest, nurse Martin Platt

At the time of writing, I am increasingly fearful that Summer’s story is heading for melodrama rather than a less dramatic portrayal of the reality of life with Type One which might be more helpful in raising awareness, but wouldn’t generate viewing figures. Summer’s onset and diagnosis were accurately portrayed, and credit should go to the scriptwriters and to the actors involved for keeping it pretty real. However, at the time of writing (early December 2021), Summer has become the centre of a story about an alleged inappropriate relationship with her neighbour and English teacher Daniel Osbourne, with diabetes reduced to a bit part in the story (Mr Osbourne’s giving her an “energy bar” when her blood sugar was low being used as part of the evidence against him). An unfortunate echo of the Katy storyline, and certainly a distraction from any awareness-raising about diabetes.

Summer with her alleged ill-advised love-interest,
teacher Daniel Osbourne

I shall be interested to see where this one goes: there have been passing hints that Summer is having some concerns over apparent (to her) weight gain, which leaves the door open for a diabulimia storyline, so that may yet be part of the story, and would be a good line to pursue in many ways, given that diabulimia is a hidden and overlooked aspect of the condition, very much known to me because of the battles faced by a good friend of mine who lives with it.

However, what has again been overlooked is the opportunity to portray the often dull omnipresence of diabetes in our lives. I am very much at peace with my diabetes, but if anything ever threatens to drag me down, it is this relentlessness. Most of us, most of the time are not visibly unwell, nor apparently burdened. Yet we are burdened, and if we don’t respond to and deal with that burden every single day, we would very quickly become unwell and, well, die. Diabetes is, as the song says, Always on My Mind (there you go, that’s the title sorted!), and that’s a very difficult reality to portray to others without becoming a bore. It’s not dramatic, it’s seldom tragic, but it’s always there. The first and last thing that I have done every single day since Christmas 1997 is to check my blood sugar level, and in between times, every action, every event, every plan, is made with reference to its potential impact upon my BG level. And as I so often point out, the irony is that it’s the miracle drug to which we owe our survival - insulin - that presents the day-to-day threat to our wellbeing. That’s a very odd thing to have to live with. We don’t monitor and react to the condition as such, we monitor and react to the effects of the drug used to treat the condition. And the administration and monitoring of that miracle drug is entirely in our own hands, day in day out.

If Summer Spellman’s diabetes in 2021 was being accurately portrayed, she would have at least one device visibly attached to her body, she would be seen frequently checking a phone or reader, and either fiddling with a pump or administering an injection in a potentially undignified manner before every meal. She would also quite often be mildly unwell, possibly a little confused, and would need to sit down somewhere and eat jelly babies or similar. To describe all this in writing makes it sound more intrusive than it actually is, but it is the truth. As the Diabetes UK campaign says, diabetes is relentless.

This post is perhaps untypically negative for me, and I am not given to self-pity, so I must conclude on a positive note. I am fortunate, very fortunate: I am fortunate that I live in 2021, not 1921 or any earlier; I am fortunate that I live in a prosperous western country with a publicly funded healthcare system; I am fortunate that I did not endure diabetes as a child or adolescent, when it would have impacted far more upon what I wanted to do; I am fortunate that I am male, and therefore not burdened with the additional impact of monthly hormonal variations on blood sugar, nor the body image issues faced more by women than men; I am fortunate that the relentless march of diabetes technology is reducing the burden, notably of finger prick testing; and above all I am fortunate that I enjoy the support and friendship of the many people from the diabetes community whom I have met and worked with in recent years, both fellow patients and healthcare professionals.

So I’m doing fine with it, and to continue to do so well into old age is my realistic and achievable aim. But yes, diabetes is Always on My Mind, whether it shows or not.

There's always a good song title for any post, and with this one there are two standout versions to share: either the peerless Elvis from 1973 or the wonderful electro-pop reworking by the Pet Shop Boys which famously prevented Fairy Tale of New York from getting the Christmas Number One spot back in 1987. A great song, with two very different interpretations. Click on those links to enjoy either or both versions on Spotify.

Happy Diaversary to me when it comes, and Happy Christmas to everyone.

September ’21 (Oh What a Night!): ArT1st Live

I’ve never been particularly prolific on social media or as a blogger. I prefer to use fewer, more considered words rather than too many words in the real world and I am no different in the online one. Moreover, it's been an exceptionally busy few months for me, with various post-retirement involvements and responsibilities all bringing worthwhile, enjoyable yet time-consuming tasks my way since the end of summer. And with two members of my family near and far, as well as a best friend, unwell in recent days, that too has been more of a priority than shouting into the echo chamber of diabetes Twitter during this Diabetes Awareness Month.

I've looked on as November has brought the usual crop of posts, tweets and images, all aimed at raising awareness, especially in this centenary year of the discovery of insulin therapy. I’m a little bit concerned that it’s starting to become a bit dutiful and ritualistic, but I admire those who persist. There is a growing sense that it's all been said before, and the “awareness-raising” posts that crop up on Twitter, Facebook and Instagram during November in the run-up to World Diabetes Day on the 14th often seem increasingly contrived or recycled. I sometimes worry that awareness raising does nothing more than preach to the converted. Many who were previously prominent in the diabetes community have gone quiet, and it sometimes seems that they are the wise ones. I was very sad recently when I saw a post from one of them apologising for his lack of advocacy presence, or worse still another saying she had been accused of lack of advocacy activity - the lady concerned is more than a little busy raising two lovely pre-school children, amongst other things. Those just quietly getting on with their lives without telling the world all about it are in many ways my dia-heroes.

Having said that, I have read, this year as every year, some wonderful observations and stories which serve to remind us all that we are far from alone, and for those newly diagnosed that there is a long and fulfilling life to be lived despite the undoubted challenges of managing the condition. Such posts and stories encourage others, and encourage me to keep writing and sharing, and more importantly to enjoy the work of others.

I enjoy writing, and so if and when I find something worth saying, I shall say it. There's no point in just writing for my own pleasure, so I shall continue posting here and hope that some will enjoy it. However, as befits my long-held and oft-stated position, I have little expertise in diabetes, only experience of it, and limited enthusiasm for diabetes technology, so there's not much for me to write about in the field of diabetes. Heaven forbid that I should be thought of as a “diabetes blogger”.

So I am writing and posting this piece for Diabetes Awareness month, and for WDD on Saturday. It’s a long-overdue reflection on ArT1st Live, already fading into a distant memory, yet in many ways the proudest day of my 24 years living with diabetes, and a day which encapsulated so much about my attitude to the condition. It’s about diabetes, yet it isn’t. Just like me.

The  ArT1st Project - still very much current and future as well as past - came to a triumphant climax on Saturday 25^th September, with a gathering of around 150 people from across the UK and beyond at Drapers’ Hall in the City of London for a celebration of the creative and artistic talents of people living with Type One. 

The project had originally been the brainchild of Partha Kar back in 2019, and was supposed to be a one-off real-world event. He invited a group of enthusiastic community members - both HCPs and people with diabetes – to start planning an event, but it fell victim to the Covid-19 Pandemic and became an online event, which provided a much-needed distraction for organisers and contributors alike during the tough days of the first and severest lockdown in 2020. The website remains a wonderful reminder of what was achieved by so many, and will remain for the foreseeable future as a reminder of those difficult yet in some ways life-affirming days.

However, as soon as circumstances permitted, the organising team wanted to make the live event happen, and happen it did: perfectly timed in many ways, despite more than a few Covid scares, it proved for many of us to be a welcome return to real-world socialising, to the joys of dressing up, of eating and drinking together, which are such an essential part of what makes us human. The sense of excited anticipation that comes with getting dressed up, the “how do I look? feeling, the butterflies in the stomach, were forgotten yet precious emotions. And there was so much to enjoy about the evening:

The venue, Drapers’ Hall was simply perfect, and a source of real personal pride to me, having secured it thanks to an unlikely centuries-old connection between one of the City’s most prestigious guilds and a small-town school in Lancashire to which I devoted an entire working career. Everything about it was pitch-perfect, notably food and drink of the highest quality, discrete and attentive service by the catering team, and rooms which almost literally took the breath away of all seeing them for the first time.

The Livery Hall, Drapers' Hall

The attendees - people with diabetes, their families and NHS professionals who care for them - were a delightfully esoteric mix, bringing together some familiar names and faces from the world of diabetes care and advocacy yet also many more who had seldom, if ever, met or interacted with others from the diabetes world. That alone was a triumph, extending the reach of the community in a new way.

But above all, the performances and artwork to which we were treated were phenomenal, and gave us a powerful reminder that Type One Diabetes, that most random of afflictions, creates a community which is a random collection of individuals, impossible to categorise by age, gender, lifestyle, personality type, wealth or anything else. In this case, all they had in common other than T1D was a remarkable level of creative talent, and a wonderful willingness to share it.

And so we were treated to a wonderful celebration of life despite diabetes, not life with diabetes. After a brief history lesson from me, explaining how on earth we had all ended up in this wonderful building, my best friend and fellow organiser Ellie Huckle set the tone with a thoughtful take on the link between the imperfect delights of the arts and the imperfections of life with diabetes, and then we were able to forget the D-word and enjoy ourselves. First we had the edgy comedic genius of Ed Gamble, who captured perfectly the spirit of the event with some hilarious observational material, yet remained commendably clear that he was first and foremost a master of ceremonies rather than top of the bill. 

Ed Gamble

Ed was followed by Sophie Oliver, a student of ‘cello at the Royal Academy of Music, whose dignified yet joyful interpretation of familiar favourites from popular and classical music set the tone perfectly. 

Next came Anibal Miranda, a Spaniard living in London, with passionate interpretations of the musical theatre numbers that he loves so much.

Anibal Miranda

Then a scratch acappella ensemble called The Darling Buds of May put together and led by Pete Davies, with Nick Cahm, and Abi Ackerman, three stars of the GBDoc firmament, who blended perfectly with their supporting guest vocalists with a performance of the highest quality in a musical genre in which there is no hiding place.

The Darling Buds of May

After the interval came Abi Ackerman as a vocal soloist, her powerful voice and confident stage presence filling the Hall as only she could, including a self-penned song based around the thoughts of others living with T1D. 

Abigail Ackerman

She was followed by the wonderful Duke Al Durham, a Welsh rap poet who voices feelings familiar to all of us in his intensely personal writings. 

Duke Al Durham

Next came Siobhan Argyle, a T1D Glaswegian Victoria Wood, whose catchy, witty and engaging ditties of everyday life during the pandemic were delivered with a confidence which belied the fact that this was her first public performance.

Siobhan Argyle

And finally there was Sheku Kanneh-Mason: what can we say? Already a household name thanks to his appearances on BGT, Harry and Megan’s wedding, at the Proms and much more besides, he brought his cello to life in a manner which was, almost literally spellbinding. The fact that, before and after his performance, this delightfully self-effacing young celebrity just sat at a table with other guests, and that he duetted with Sophie Oliver with not a trace of self-importance speaks volumes about the man. Truly a superstar.

Sophie Oliver and Sheku Kanneh-Mason

So much else was good about the evening, most notably the chatter in small groups that is always one of the best things about any real-world get-together, but almost forgotten is the fact that the evening raised a much-needed £6000 for JDRFUK, whilst being pitched at a cost to attendees that made it accessible to all, thanks to the generosity of commercial sponsors Abbott, Novo Nordisk and Dexcom. An auction of artworks created by people with Type One raised almost £2000 thanks in no small part to Partha Kar’s persuasive mastery of a skill new to him.

Professor Partha Kar, OBE

But perhaps the best thing about Art1st as a project and ArT1st Live in particular is that Diabetes has been present, yet totally absent. Does that make sense? Of course it does! That, surely, is a realistic aim for all of us compelled to live with this fickle condition, and I have been fortunate enough to be able to live that out that aspiration over these past 24 years. 

Art1st Live was a gathering dominated by people who live with the condition, all of whom will have spent that evening discretely aware as always that their condition needed their attention, that the unusual circumstances of the evening, the unfamiliar food and drink, the late night, the excitement would all have to be borne in mind if they were to make it to the end with enjoyment and dignity unscathed. And yet all they did was enjoy themselves. Diabetes was there, but was largely unseen except for a lot of technology proudly on display because of sleeveless dresses. It was an evening of fun and friendship, about the people, not the diabetes, the ability not the disability.

As with all my posts, I like to find it a title from a song, and this one came to me as I sat alone in my hotel room after the event, unable to sleep yet enjoying the memories already. An exuberant celebration of a wonderful night out? What better than Franki Valli and the Four Seasons’ 1976 classic? Let’s just rename it with a revised full title: September ’21 (Oh What a Night!). What a night indeed, and one which, by popular demand, will surely be repeated before too long.

In conclusion, I must salute my fellow organisers: Agnieska Graja, Pete Davies, Partha Kar, Ros Gray, Lydia Parkhurst, Lis Warren, Sarah Ali Racanière, Jazz Sethi, Ellie Huckle, Kamil Armacki, Jess Broad and Danni Hitchins. As good a team as any I have ever had the pleasure to work with, and one linked by one thing: a life with, or caring for others with, Type One Diabetes. Patients, health professionals, a charity and three commercial companies working together. Take a bow:

Members of the organising team

ArT1st Live was sponsored by headline sponsors Abbott and Novo Nordisk, and supporting sponsor Dexcom, in order to allow all proceeds to go to JDRF UK.

All organisational work was carried out by community volunteers, supported by JDRF staff.

Photo credit - Max Turner Weddings

Twitter: @maxturnerphoto

Instagram: @maxturnerweddings

Website:  www.maxturnerweddings.co.uk