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 

Looking After Number One?

Readers of my blog will know that all my posts are given song titles. So for this one, I browsed through my Irish songs playlist looking for a suitable title. Amidst some gems ranging from Thin Lizzy to Dana, I was reminded of the exhilarating emergence of the Boomtown Rats in the summer of 1977, adding sophistication to the raw energy of punk which had ruffled so many feathers over the previous year. Long before he became a fêted anti-poverty campaigner, Bob Geldof encapsulated the zeitgeist of that summer with an anthem to self-interest - Looking after Number One. Click on the link and discover it or remind yourself. Great song, but not my values, nor those of Mr Geldof in later years. Let me explain in these reflections on DX Dublin, the fourth meet-up of European diabetes influencers organised and sponsored by Abbott healthcare.

Much of the content of these conferences is only obliquely related to diabetes, but it was during a session on the second day led by two senior figures from Abbott Diabetes Care that I was reminded how much has changed in the four years since I started talking about diabetes online, let alone in the 20+ years that I have lived with the condition.

We were presented with some statistics about the take-up of FreeStyle Libre flash glucose monitoring system around the world which make clear how rapid the spread of this piece of technology has been. A glance at diabetes social media over the past year shows how access to technology remains a dominant issue for those who live with the condition, and the statistics on the spread and growth of access to flash monitoring throughout the world makes clear what a real appetite and need there is for something more sophisticated than just pricking your finger as and when possible and convenient.

FreeStyle Libre has its critics, and like any technology, it’s not perfect and not for everybody. But I well remember at the first real-world meet-up of people with diabetes (#PWDC15 at Nottingham) when Lis Warren, already by then a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. This was shortly after the Libre had been launched, and at the time, a very small group of people in the UK and a few other European countries were using it. 

"Proper” CGM was - and still is - an expensive luxury beyond the means of most ordinary people and certainly beyond the means of any publically funded healthcare system. Libre, however, has quickly proved itself to be a pragmatic compromise: a discreet and reliable way for many to keep tabs on their blood sugar levels without being pestered by alarms, at a cost which is affordable to some self-funders, and more importantly affordable enough to be seriously considered for public funding. Four years on, the dream of non-invasive and continuous monitoring “for the many, not the few” is still far from reality, but a good deal closer.

But the most interesting point made by Jared Watkin, Senior Vice-President of Diabetes Care at Abbott, was that the FreeStyle Libre was the first significant new diabetes tech product launch to have taken place in the full and unforgiving glare of the social media era. As such, the progress of the device, the praise, the reviews, the criticisms, have all taken place largely in the unregulated, unpredictable and uncontrollable world of Facebook, Twitter and Instagram. Previous new devices and therapies were perhaps advertised in specialist publications, marketed to healthcare professionals by sales reps, but with patients largely dependent on others for knowledge and access to advances in their care.

Not for the first time, this makes me feel lucky to be (just) young enough to be part of this phenomenon. Jared and his colleagues reminded us of the massive cultural change that companies such as Abbott have had to adjust to, with their product and the customer support for it subject to constant review and comment in a manner impossible to imagine even a decade ago.

I am very fortunate to be one of those members of the patient community who are asked by companies like Abbott to play a (very small) part in this process. There are voices in the online community who criticise those of us who are “affiliated” to the healthcare industry, and it is easy to make cheap accusations that we are the undeserving recipients of benefits and sweeteners from an industry only too keen to cultivate a group who will sing their praises online.

In truth, those who take part in events such as the DX series organised by Abbott are in my experience interested in only one thing, and that is to attempt to represent the diabetes patient voice in their own countries. And to allow such people the chance to meet together and compare and contrast experiences is of huge value not so much to them as individuals, but to the communities of which they are a part. 

My favourite moment at DXDublin was during a session on patient advocacy when I found myself in a small group discussion with Dimitris from Greece, Weronika from Poland, Bianca from Brazil and Melanie from Wales. How else could we five have ever found ourselves around the same table discussing living with diabetes in our very differing circumstances? The value to the communities in which we live is difficult to prove, impossible to quantify, but very real in my opinion.

An Englishman, a Greek, a Pole, a Brazilian and a Welshwoman

Yes, we had lots of fun and laughter over the weekend, yes I loved spending time with some who are already good friends and others whom I was meeting for the first time, but the engagement and commitment shown by all to diabetes advocacy in their home countries is truly awe-inspiring. 

Expert patients from across Europe

The weekend’s programme included valuable sessions from experts in communications and advocacy - for me the most memorable being the hugely impressive Tiernan Brady, one of the most prominent LGBTI rights and equality campaigners in the world. His humble and good humoured but powerful session on how he helped secure the epoch-making votes in favour of gay marriage in Ireland and Australia was truly inspirational for me and many others in the room, and taught us much about the art of persuading and representing in our hyper-connected world.

#DXDublin was a wonderful experience, an opportunity for which I am truly grateful, and I wish to thank all those who worked so hard to put together and deliver the programme, and also those who took part. It is very hard to resist the oft-stated conclusion, surrounded as I was by people with Type One from all over Europe and beyond, all of them significantly younger than me, that people with diabetes are almost invariably outward-looking, generous-minded and sensitive individuals.

Diabuddies from across Europe and beyond

So why the title? Let's say that far from Looking after Number One, DX helps us to make a better job of Looking after Type One, not just for ourselves, but also for others.

Disclaimer: I was invited to DX Dublin by Abbott Healthcare, who paid for all travel, accommodation and subsistence expenses for me and other delegates. Opinions on the FreeStyle Libre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.

We Are(n't) Family

You know sometimes there are incidents whose significance doesn’t dawn on you until you reflect on them in a quiet place on your own some time later?

Well I had one of those this last Friday, April 27^th 2018.

I had enjoyed a lovely evening of food and chatter with three friends at a restaurant near Victoria Station in London. There was me, Ellie, Steph and Izzy. We had spent the evening eating, drinking and chatting - nay gossiping - and laughing, and the time had come to pay the bill. Cue further laughter and chit-chat as we tried to work out who had eaten and drunk what. Our waitress for the evening had done a good job in striking the balance between efficient service and friendly banter, without being too intrusive, but when we were about to leave she couldn’t resist the temptation to ask: what was the connection between the four of us?

I guess most groups in a restaurant on a Friday evening are easy to read - intimate couples, celebrating families, boisterous work colleagues - but she clearly couldn’t work us out. “Have a guess”, I said, and her unconvincing guesses included father and three daughters, a boss and his employees: both basically saying “old guy with young women” But she had to give up, and was then visibly struck when we said that we were just friends from different parts of the country who share a medical condition.

All very obvious really, but the more I think about it the more it serves as yet another reminder of what a precious thing the diabetes peer support network known as the #GBDOC is. To a muggle like that waitress, it is clearly puzzling to see the likes of me socialising with the likes of Ellie, Steph and Izzy. Whereas to us, it’s just, well, what we do.

And of course that was just the start of it. The four of us were gathering for a weekend centred around the third TADtalk event, a day-long meet-up of people with diabetes organised by an endocrinologist from Portsmouth who happens to believe - passionately - in the power of connectivity among those who share a condition and those who help them to live well with it.

I, and many others have written and spoken about the power of peer support before, so in that sense this post is repetition of, or at least a variation on, a familiar theme. However, every time I meet with my fellow diabetics in groups large or small, every time I exchange easy banter with them on Twitter, I am reminded just how precious this phenomenon has become to me and to many others.

I will not describe the TADtalk event in detail, as others have already done it better than I can in tweets, or for example in this post by the organiser, but I will just remind myself and others that I have the good fortune to be part of something very special. As I adjust to retirement from a long career in a people centred job in which I was surrounded and kept young at heart by some wonderful young people, I now find myself surrounded - often virtually, but sometimes literally – by dozens of friends who have nothing else in common other than a pesky, 24/7, potentially life threatening medical condition. We are young and not-so-young, female and male, rich and poor, shy and extrovert, gay and straight, black and white, religious and secular. In short, we are people. The thing about Type One diabetes is it does not discriminate. So neither do we.

And the point is really this: with most of these people, I hardly ever talk about diabetes these days. Of course if the need and occasion arises, they are a wonderful, wise and well-informed source of information and support about every aspect of living with diabetes. But above all, we are just friends who chat, laugh and cry together like friends do. Or perhaps more accurately, like families do. Because for me, that is how the GBDOC feels, and I make no apologies if this sounds cheesy in the afterglow of such a fun weekend. We are indeed an extended family, and like any family we sometimes fall out, we sometimes bicker, but in the end we know that blood sugar is thicker than water.

As Sister Sledge put it: We Are Family, and I for one am grateful that I have "got all my sisters, brothers, aunts, uncles, cousins and whoever with me."

This post comes with my thanks and greetings to all these #FacesOfGBDoc both those who were present last weekend and those who were unable to join in. Here they are - an update to this picture will be posted on Twitter when I have added all later additions to this picture:

Do Anything You Wanna Do: DAFNE and me

Well, I finally got to meet DAFNE! After 20 years of living with Type One Diabetes, I have, better late than never, received the “education” to which we are all entitled to help us live with a condition which demands so much of us in terms of self-care, self-monitoring and self-treatment. Just in case you don't know, DAFNE stands for Dose Adjustment for Normal Eating, and is the recognised education course for people with Type One Diabetes. I'm now a DAFNE graduate, and I've got the certificate to prove it:-

My DAFNE Certificate 

Those readers who follow me on Twitter, or who have read my previous blog posts, will perhaps know that I had to fight quite hard to be allowed onto a DAFNE course. Fourteen years after diagnosis, I was discharged from hospital care back in 2011 because of my “good control” and lack of complications, and my D-care had been reduced to an annual check-up with my GP. It was only when I started associating with other Type Ones, thanks to the GBDOC, that I came to realise how minimal my input from the health service had become, and with retirement from work and a twenty year diaversary occurring at around the same time, I asked to attend a DAFNE course, only to be told I was ineligible because I was not under hospital care.

So I referred myself back to the hospital, only to be told there that my HbA1c was “too good” and that I “didn’t need” a DAFNE course. I politely insisted, citing a wish to be better informed in my judgements of insulin dose, rather than relying on semi-educated guesswork, and eventually found myself at the start of 2018 on a course. It was the 5 x 1 format, rather than a full five day week - apparently more popular due to peoples’ work commitments.

So how was it?

Well, most importantly there have been many positives:

I have come home every week like a new boy at school, clutching a shiny ring binder increasingly full of paper, and the information both on paper and presented during the course is detailed and useful. I have achieved my basic aim, namely to learn more about the complex relationship between food, insulin and activity. The pocket-sized Carbohydrate Portion List alone is a wonderful thing, and I have been genuinely surprised and enlightened to learn of the carb content of some foods which are a regular part of my diet. Some puzzling highs and lows over the years now make much more sense!

DAFNE Swag

The presenters, a dietitian and DSN, have been thorough, attentive and caring in their approach to the diverse group of participants on my course, and display detailed knowledge of both diabetes and the principles of DAFNE approach to its management. I cannot fault them for their knowledge of their material and their belief in it.

The opportunity to devote time and mental space to my condition has been most welcome and useful. I developed Type One at a time in my life when I was extremely busy both professionally and personally, and so I have to say that I didn’t really give diabetes the attention it warranted until quite recently. I just wanted to carry on as normal, and indeed I was pretty successful in so doing. But looking back, I can see moments when the cracks were starting to show, and I should perhaps have given the condition a little more of my time. So being forced to “study” diabetes, to note food intake and injection doses in minute detail and to discuss outcomes has been good for me. Nobody has ever mastered diabetes.

My colleagues on the course have proved to be very good company, as fellow PWD invariably are. Prior to this course, I had never met any fellow Type Ones in my local area other than pupils at my school, so it has been interesting to meet a small group who share the condition. As always, it serves as a reminder of the completely random nature of Type One to meet people who are a diverse group of individuals with different backgrounds, lifestyles, tastes and experiences, yet with such a big thing in common. We have had many laughs together, as well as sharing in our difficulties.

What of the negatives?

Well, I am loathe to criticise, not least having had to fight to get on the course. And in overall terms I feel better-informed and therefore more confident for having done the course. However, in all areas of life, I am not a fan of absolute rules and principles. I prefer guidelines, and my experience of diabetes has taught me that it is a condition where absolutes seldom work.

So the somewhat evangelistic application of “DAFNE principles” that pervades every aspect of the course does not sit comfortably with me. To be told to follow "rules", as if it is a matter of life and death, such as do not pre-bolus, do not test after meals, change your lancet every time, wash your hands before every blood test, and to apply rigid mathematical formulae to doses and corrections seems to me to run counter to the very nature of diabetes. It’s a mercurial condition which defies logic a lot of the time. The same food, the same activity on two apparently similar days can produce startlingly different outcomes for no good reason. The same BG reading can feel very different to different people. The same insulin works for some and not for others. My favourite acronym from the online community is YDMV: Your Diabetes May Vary. How very true, yet DAFNE somehow appears to suggest otherwise.

In personal terms, I was more than a little dismayed to have a radical change of dose imposed on me at the start of the course, a massive reduction in insulin intake (both long and short acting) compared to that which had served me well for many years and given me an Hba1c of 46 (6.4). It was inevitable that such a striking reduction would lead to uncomfortable highs, and it did, such that over the five weeks, we gradually returned to the previous levels. Having said that, an adjustment to the balance between basal and bolus has been the most useful and significant outcome for me, but that could have been achieved by less dramatic changes, as to reduce both at the same time didn’t give the opportunity for true evaluation of cause and effect. I intend to persist with experiments with these levels.

Now I fully recognise and understand the difficulty of delivering a course to participants of varying degrees of knowledge and experience of diabetes, and I repeat my admiration and respect for those who have researched, devised and present such a valuable body of knowledge to patients who need it. I also realise and accept that rules and principles have to err on the side of safety, not least in our risk-averse age and culture.

However, I do wonder whether a limited dose of peer input might be helpful, to both the course presenters and participants alike. My own experience of diabetes has been that in 20 years, all the most useful hints, tips and knowledge has come in the past few years thanks to the GBDOC. Perhaps some of that expertise and experience could be brought to education courses such as DAFNE. I would willingly offer my time to meet fellow PWD, provide a little real-life experience and above all assure them that it is possible to live well with Type One. I would love to have met my 60 year old self when I was newly diagnosed at 40.

In more general terms, I wonder whether some thought should be given to the timing, nature and delivery of diabetes education. What is the best timing for effective education following diagnosis? Is it the best use of scarce resources to run five day courses delivered by two busy HCPs? I wonder whether two or more shorter courses might be more effective. Perhaps one 6 - 12 months after diagnosis then another after around 5 years. These could be as little as one day in duration, with additional content available in print/online. And could they be delivered by HCPs with volunteer peer support?

And in the meantime, I’ll watch, listen and observe, but when it comes to self-management, I’ll be as stroppy as Eddie and the Hot Rods were in this classic of rebellion back in 1977: 

Do Anything you Wanna Do.

And here’s my DAFNE playlist:

DAFNE Songs

Disclaimer: I am very aware that I am not an expert, and have no qualifications other than experience and common sense. Please be aware that what works for me in managing my diabetes may not work for you. 

I'll be There for You

2017 has certainly been a significant year for me. Full retirement and a house move are pretty big events, so the year hasn’t exactly been quiet. Indeed I feel well and truly shaken out of any sense of drift or complacency, and grateful that I’ve been able to make these significant changes in my life at a time of my choosing, and with enough physical and mental energy to embrace them as new challenges rather than feeling “put out to grass”. I am certainly not daunted by having turned 60 - I have a nice sense of entering a new phase of life.

I never planned it this way, but I have to say that my relatively recent discovery of the online diabetes community has been a tremendous help in enabling me to feel re-invigorated and re-energised at this time of my life. I thought it appropriate to post some thoughts on this informal peer support community to mark a notable milestone in my life with Type One diabetes.

It’s twenty years on December 19th since I was diagnosed with the condition (an incorrect diagnosis of Type Two in the first instance - I've told that story here), shortly after the landmark birthday of 40 years. Of course that has to go down as a big negative in my life: developing an incurable, life-changing and potentially life-threatening medical condition at around the halfway point of a typical lifespan is not what anyone would choose for a happy and contented life.

Yet when I think about what I have done this past year alone, it is hard to avoid thinking that my life might now be rather dull without diabetes. I know that there are people out there who resent positivity about diabetes, so let me apologise to them, acknowledge how lucky I am to be able to live well with the condition, and ask that we accept that everyone has their own way of dealing with what happens to them. My own approach is, and always has been, to look for silver linings. And getting to know so many others who have, or live with people who have, diabetes has certainly been a silver lining for me. Some of the greetings I received from diabuddies via Twitter on my 60th birthday were wonderful, so thank you - you know who you are.

In 2017, diabetes has given me opportunities and experiences which have filled the potential void caused by retirement from a busy people-centred job: speaking engagements at #TADtalk2017, at the FreeStyle Libre factory, at the All-Party Parliamentary Group at Westminster and live on Breakfast TV would all have seemed like bizarre dreams a few years ago. And then there’s the real-world meet-ups: this year alone, I have spent lovely times in groups large or small in Oxford, Manchester, Amsterdam, Witney, Bakewell, London and Birmingham with friends from all over the UK and beyond, who were in all cases complete strangers until very recently. And most days I spend time on Twitter in conversation, sometimes serious, sometimes frivolous, with others all over world whose only connection with me is a shared medical condition. My horizons have expanded immeasurably thanks to an annoying and sometimes dangerous medical condition.

Yet it hasn’t been all sweetness and light. Wherever two or three gather together, they will disagree about something, and the diabetes community is no exception to that. It’s human nature, after all. The online community hasn’t been the happiest of places at times this year, and I have found myself the subject of some hostility, in particular over two issues:

Firstly, it became apparent in July that there was significant controversy and lack of confidence surrounding the so-called GBDOC and its founder and hitherto de facto leader. With trust in the brand and its weekly tweetchats severely eroded, I found myself as one of a well-meaning group of people who attempted to guide the community into a more collective and inclusive ownership, rather than being a mouthpiece for one individual. Although our moves were widely accepted, appreciated and recognised they nevertheless caused a degree of resentment in some quarters and unwarranted accusations of a “takeover”. 

Those who felt so threatened by this appeared not to acknowledge that nothing happens in a group large or small without someone taking the initiative, and that taking the initiative does not necessarily imply power grabbing or ego tripping. I hope that the continued existence of a warmly supportive GBDOC community and of weekly tweetchats under the community account @GBdocTChost led by volunteer hosts serves as powerful reassurance to those who feared a takeover. I would like publicly to thank in particular @Jules1315 @type1bri and  @Type1Adventures for their work in ensuring that this happened and continues to happen. Public-spirited, generous-minded and supportive individuals every one of them.

Then secondly came another source of controversy sparked by the decision in September by the NHS to add FreeStyle Libre sensors to the approved tariff for free availability on prescription. Although this development was the result of many months of hard work by groups and individuals, notably our very own NHS Sugar Doc @parthaskar, I was inevitably associated with the decision given my longstanding public endorsement of the Libre, my consequent attendance at events run by its manufacturers Abbott, my speaking to a parliamentary committee about it and my TV appearance on the day of the announcement. Understandably, I again felt the resentment of those unhappy with the decision, and even found myself and others accused, laughably, of “taking payment in little brown envelopes” from the manufacturers.

With some folks fearing that availability of the Libre on prescription would lead to reduced availability of CGM and other diabetes technology, or criticising the fact that Abbott have a monopoly on flash glucose monitoring, or unhappy that NHS availability was leading to delays in supplies for those still self-funding, and valid concerns arising with the use-by dates on sensors, it seemed for a while as if the funded availability of a new device which had been so very helpful to so many, including me, was the work of the Devil himself. And as so often in life, the quietly contented were drowned out by the noisily disgruntled, which must have been disheartening for those who had worked so hard to make it happen. The Libre, like insulin pumps, like CGM, is not for everyone, but at least we are moving towards a situation whereby it should be available to all, regardless of ability to pay. Had social media been around at the time, I am quite sure that some might have been equally angry about the first insulin pens, pumps and meters. Change of any kind is seldom universally welcomed.

Again, however, as time has passed and things settled down, more positive voices have come to the fore, and we reach the year’s end with the online diabetes community very much alive and well. My hope for 2018 and my next 20 years of living with diabetes is that people will come to accept that differences of opinion, factions and groupings are an inevitable part of any group of people. The wonderful thing about the GBDOC is that the very randomness of diabetes produces an online community which is by definition random (albeit including only those who use social media). So it would be a pretty odd, and frankly dull place if we all agreed about everything.

Other groups of which I am part consist of very differing people, some of whom I like a lot, some of whom I am indifferent to, and some of whom I disagree with. But that doesn’t mean I necessarily want or need to criticise those with whom I don't get on; indeed I have massive respect for those whose opinion differs from mine on all sorts of issues. In the real world, I just sit in a different part of the room from those with whom I differ significantly, and the GBDOC rightly consists of people who sit in different corners of the virtual room. I tend to “sit” with those who actually don't talk about diabetes that much. I just like having friends who “get it”, and I enjoy talking to them about other areas of mutual interest, with the comforting feeling that I am hanging out with folk who have such a big thing in common with me. It is a joy to me to share cat pictures or things like this year's #BaublesOfGBDoc with a group.

But we all use #gbdoc in different ways and rightly so: some talk enthusiastically on social media about pumps, ratios, doses, CGMs, closed loop systems etc, and I admire them for it and enjoy their enthusiasm and expertise.  But it’s not for me. Others use social media as an outlet for their woes and frustrations, and whilst I don't tend to do that, I do try to be a virtual shoulder to cry on and greatly value that opportunity. Some, including me, post images of their triumphs and I for one derive great pleasure from seeing other peoples' success. There's a word for it: confelicity. It saddens me when I read suggestions that to do this is selfish because it causes distress to others: nobody forces anyone to be on social media, and there’s always a mute button if others’ way of saying and doing things causes stress or offence.

When push comes to shove, we are all on the same side and it is a constant pleasure to me to see such a diverse group of people being a real source of company, friendship and support to others. It’s what friends do; as the theme song says I’ll be there for you. And I for one am glad that so many others are there for each other and for me. 

Here's to the next 20 years. 

Birmingham Blues

Saturday’s DX2Birmingham event was an excellent opportunity to meet with other Type One bloggers, all of them already known to me as it happens, and to share some ideas and experiences, and most importantly, a chance to meet with Abbott leadership and hear more about the complex and ongoing process of widening access to the FreeStyleLibre in the UK.

I thoroughly enjoyed the day, but because there aren't many songs about Brum, ELO's Birmingham Blues will have to serve as my song-based title for this post.

The first part of the day was an enjoyable and interesting chance to discuss some ideas around supporting our lives with diabetes and helping others to do so.

After an icebreaker involving "speed dating" - but with people who were mainly already good friends - we had a session with some good tips and ideas from PR experts about how better to promote and spread our online writings which I hope to explore further in the future as and when time allows.

We had a good session working in small groups on ideas for spreading the word and supporting others through blogs, tweetchats etc. Given the recent turbulence surrounding GBDOC and the successful transition to shared hosting of the weekly tweetchat, it was interesting to share ideas on how that might be sustained and developed. It was most interesting to hear that a social media expert comment was well aware of the GBDOC and its recent difficulties, but also to hear him praise its continued existence under new collective management. It clearly stands as a fine example of peer support. I was sad that more of those who had been directly involved in keeping the tweetchat going weren’t there, and I share the view that attendance at an event like this could be more widely and transparently available. In the meantime I hope that my presence, and that of others, and our reporting back, are of some benefit:

A small group of which I was part discussed the idea of perhaps drawing in more guest hosts from outside the regular community, such as charities and special interest groups. This has already been done, of course, on the Access to Insulin issue, but other topics, notably the very topical diabulimia issue, might well be good material for involvement of people with specialist knowledge, either as hosts or joint hosts. Another idea was to have chats specifically for those associated with people with diabetes, most obviously friends, partners and parents. This was a successful element of the two PWDC conferences in 2015 and 2016 and would be very beneficial to those groups, especially if the actual #pwd agreed to stay away or just “lurk and learn” rather than take part.

Lis, Pippa and Tim - diabetes bloggers all

We also felt that there were significant issues for parents of children with diabetes who have used social media to support caring for their children through infancy, childhood and adolescence, and then face their own “transition”, as their children start to self-manage. Tweetchats just for parents might be useful in this respect.

The afternoon was largely taken with feedback and discussions about the FreeStyleLibre and its availability through the NHS. It is abundantly clear that those who work for Abbott are proud of their company in general and this product in particular, and are keen to hear from those who use and benefit from it.

A good summary of the discussion has already been posted by my good friend and fellow blogger Melanie Stephenson here:-

http://www.lifesportdiabetes.co.uk/2017/10/dx-birmingham-2017.html

I will not replicate her good work other than to say that it is reassuring to know how much goes on behind the scenes involving Abbott themselves, diabetes charities, healthcare professionals, NHS administrators, and yes, volunteer people such as ourselves, to try to ensure the best outcome for the maximum number of people. 

Concerns regarding issues such as CCG policies, continued access to test strips as well as Libre sensors, unacceptably short use-by dates and replacement of faulty sensors were all aired and concerns noted. We shall see what happens.

Neil Harris of Abbott talking about developments with the FreeStyleLibre

The issue of acceptability of FreeStyleLibre and CGM as proof of fitness to drive is very much alive, and in all modesty I would say that I have been pleased to hear that both Abbott and Diabetes UK are using a simple case study that I did regarding use of FreeStyleLibre before driving as a significant part of their evidence to the DVLA. I may be criticised for my association with a healthcare company, but how else could I have made my voice heard, and by extension that of many others, on this matter?

The online diabetic community has not been the happiest of places to be at times this year, and as inevitably happens wherever two or three are gathered together for any length of time, differences and disagreements emerge.

There has always been a degree of suspicion about the way in which the healthcare industry develops relationships with those who use its products, and those who choose to respond to invitations from the likes of Abbott will inevitably look as if they are “in the pay” of a particular company, incurring at best the suspicion and at worst the resentment and hostility of those who prefer to remain independent. I was among those who felt the heat of such criticism before this event in Birmingham.

I would say two things:

Firstly, I have never actively sought invitations from Abbott or any other company. It was the other way round: I was an enthusiastic early user of FreeStyleLibre and as a result of publically expressing that enthusiasm, I was approached by Abbott.

Secondly, I have never been even asked, let alone pressurised, to say good things about Abbott or the FreeStyleLibre online or in print. I have said good things because my own experience makes me want to do so. I felt very strongly from the outset that the FreeStyleLibre was a life-changing support to me in managing my condition, and that it had the potential to do so for many others like me. Living in an area where diabetes care is very technophobic, and having only learned of the existence of FreeStyleLibre via social media, I wanted to spread the good word and perhaps help to ensure that it became a choice for more than just those with the ability to pay. That decision that I made over two years ago has led to some wonderful opportunities and connections which I have valued and appreciated, and I believe that in a very small way I have helped to spread the good word to those for whom it might be beneficial.

I have been critical when necessary, but as is my wont in all areas of my life, I work on the principle that if I have praise, I give it publically, but if I have criticism, I prefer if possible to do so in a more restrained, constructive and discreet manner. I post good reviews on things like Trip Adviser, but if I didn’t enjoy a place, I just say nothing, unless a restaurant, hotel or company gets something seriously wrong. In such cases, I tell them so directly, and if they fail to acknowledge or respond I reserve the right to make a public fuss.

I am under no illusions as to my own influence and importance in the area of diabetes care; they are minimal, but if a healthcare company chooses to involve me in their work, I am happy to help.

Disclaimer: I was invited to DX2Birmingham by Abbott Healthcare, who paid for all travel expenses for me and other delegates. Opinions on the FreeStyleLibre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.

Post-Script:

Our day concluded with some of us staying for (self-funded!!) drinks at the wonderfully entertaining Aluna Cocktail Bar then a small group of us shared a (self-funded!!) evening meal at Café Rouge. I make no apologies whatsoever for enjoying the company and mutual support of some very dear friends with whom I have little in common except a medical condition. I only wish that more of them had been there. 

And no, we didn’t just talk about diabetes!

 

Fun and fellowship with diabuddies Ellie, Lydia, Lis and Nick

GBDOC

In the past couple of days it has become clear that there are significant and serious concerns about the GBDOC, relating to questions about the financial and business affairs of the founder of the formalised community. This comes on top of unease about the crowdfunding appeal for the third PWD conference in August and unhappiness with some comments used by him on social media.

The gentleman concerned still has the opportunity to respond if he wishes to do so, and if he does, we should all look at what he says with an open mind. I am not alone in knowing little of the detail surrounding this situation, but it is clear that a large number of users of the online community have lost faith in its founder and de facto leader, and he has as yet failed to respond to concerns widely raised.

I write as a very committed participant in the community over the past four years or so, but I am well aware of others whose use of social media for peer support long predates mine, and indeed the existence of the GBDOC. I have no authority other than relative seniority of age and length of association, but I have been party to, indeed have instituted, much discussion on Twitter over the past 24 hours about the future of GBDOC.

I have been encouraged but not at all surprised by the depth of feeling and good sense that has been so apparent. It is clear that I am far from alone in my love for the community, and I am keen to play my part.

May I above all suggest that we be very wary of quick decisions and hasty judgements?

The community clearly has a life of its own regardless of any “owner” or social media account and of course hashtags belong to everyone and no one. As such the online community will flourish and prosper, but like any community it needs some sense of direction and a degree of centralisation or else it will fragment.

I hope that we can allow the tweetchats to happen more or less normally for the next two weeks. I understand that Ros (@Type1Adventures) and Bri (@type1Bri) had agreed to host the next two weeks and that should go ahead as planned. Ros and Bri are active, supportive stalwarts of the GBDOC who have both done great things for pwd in their local areas as well as online. I cannot think of better hosts.

They have both said that they will host under their own accounts using the #GBDOC hashtag, and having acknowledged the issues at the start of the hour, I think we should all chat as normal, if interested in the topics.

We could then, perhaps, have a separate chat about what to do next. The hashtag has been much discussed already, as has the idea of shared/rolling hosting, charity involvement etc. A poll might be worthwhile, but surely not until we've all had time to think.

The GBDOC is very precious to me, as I have said many times. It need not be complicated, controversial or divisive. It has flourished (unlike, for example, its French counterpart) because a lot of us talked about stuff other than diabetes and as a result became above all a group of friends. I have made some wonderful friends through this community – we just happen to have a medical condition in common. I hope it will stay that way.

Thank you all for your thoughts on this matter; please respond with your honest and considered thoughts if you wish to do so, but take your time.

Adrian Long 

Tulips from Amsterdam

Well, not quite Tulips from Amsterdam - try listening to that and not getting it stuck in your head - but here are, I hope, some nuggets of #diawisdom from Amsterdam. 

I've decided to do a quick post to summarise and publicise what went on at #DXAmsterdam. I started writing an account of the weekend, but it’s long and reflective and will take time to finish with some busy days ahead. So here's a brief summary: going for the second time to a weekend in a European city to spend time and learn more about diabetes with bloggers from all over Europe has reminded me very strongly of the importance of sharing and supporting others. I want to get something posted as quickly as possible, along with some of my favourite images of the weekend.

So here are my take-home messages about #DXAmsterdam. First the general ones:-

• Driving to Leeds-Bradford Airport from Lancashire is the nicest “airport run” imaginable.

• Schiphol Airport is great: you can still go up on the roof and watch the planes come and go – a forgotten pleasure from my childhood. Lacking the tense feel of many airports.

One of the more relaxed waiting areas of world airports

• Amsterdam is everything we expect it to be: cool, relaxed and infused with a “live and let live” vibe. I think we know why. Yet another city where I want to live, but never will.

No, we didn't go shopping there!

• Amsterdam's hump-backed canal bridges make for perfect selfies:

• The Dutch know how to make full English breakfasts every bit as well as we do, and speak English rather better than we do.

Lydia and I show Matthijs (Holland) and Sascha (Germany) the joys of a full English

Now the serious stuff, the messages from our conference:-

• Nothing stops you from achieving your dreams – you just need to find another way if something goes wrong. We started with a talk by the truly awesome Claire Lomas MBE, who was left paralysed from the waist downwards after a horse-riding accident. Her response? Walk the London Marathon with the help of some bionic legs, take up motorbike racing, give birth to two children, write and self-publish her story and a whole lot more. All with a cheerful smile and an indomitable spirit. We were left humbled - in the nicest possible way.

Claire Lomas: Awesomeness personified

• Positive thinking can be taught: a session led by life coaches Peter Koijen and Ligia Ramos from in2motivation had us all talking with each other and exchanging thoughts of our hopes and wishes.

The day's key messages caught by our graphic artist

• Diabetes is no barrier to anything: We all know that, but we met Josu Feijoo, a Spanish man with Type One diabetes who has apparently climbed Everest, walked to the North and South Poles and is now training in the hope of being the world’s first Type One Diabetic astronaut.

Josu Feijoo with Esra Avci from Turkey

• Quantified Self: A baffling concept which was the subject of a second, separate, conference that we attended as guests on the second day. But I quickly realised that it really means something to us: People with diabetes “live by numbers” all day, every day, and as such, we are experts in something we’d never heard of. I think the delegates and experts of this other conference quickly realised that we could teach them a thing or two about “self-knowledge through numbers”.

Baffled boffins learning all about "Living by Numbers"

• FreeStyle Libre: The most important one for the diabetic community. Of course we must remember that the weekend was paid for and organised by Abbott Healthcare, who of course have an interest in promoting their product. However, their people, both technical and commercial, reveal what seems to me to be a sincere and well-founded belief in the Free Style Libre, and are genuinely keen to meet and engage with people like me, who started saying how great it was well before Abbott even knew who I was. AND THERE IS GOOD REASON TO BE OPTIMISTIC THAT IT WILL BE AVAILABLE ON PRESCRIPTION IN THE UK. 

The British and Irish delegates with Neil and Ollie from Abbott

Our hosts took the time in a special session to explain to the UK delegates how long, tortuous and thorough the process is to get a medical product listed for NHS funding. They are living and breathing this goal, and assured us that progress is being made, albeit slowly, towards what they hope will be the outcome we all want.

And last, but not least:

• The bond among people with diabetes is special, whoever they are, and wherever they come from. The #DX format has rightly been expanded to include the additional countries where Abbott are selling the Libre, meaning that as well as my established good friends from the UK, France, Germany, Holland and Sweden, I met and made friends with people from Belgium, Spain, Poland, Ireland, Turkey, Greece and Russia who either have diabetes or work with and for them. I even made friends with a somewhat feisty and strong-minded woman from Greece who caused controversy on the first day by being rather too ready to force her strident opinion on how things should be conducted. But the diabetes magic worked, and she's now a #diabuddy: 

My Greek diabuddy, Maria

Truly #DiabetesWithotFrontiers, and a wonderful opportunity to remind myself that we are so much stronger together – a lesson that goes way beyond diabetes in these troubled and turbulent times.

The whole group - #DiabetesWithoutFrontiers

I will publish a more detailed account of the weekend in due course.

Disclaimer: I was invited to apply for DX Amsterdam, and selected by a random draw, by Abbott Healthcare, who paid for all travel, accommodation and subsistence expenses for me and other delegates. Opinions on the FreeStyle Libre Flash Glucose Monitoring System expressed by me are my own and not those of Abbott Healthcare.