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 - is still there, now of course very outdated, but in a very good way.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

Wake me up before you go-go (too low): FreeStyle Libre 2 comes to the NHS.

The long-awaited FreeStyle Libre 2 has arrived in the UK, and is now available on NHS prescription as a straightforward replacement for Libre 1.

It has to be said that compared to all that is going on in the world of healthcare at the dawn of 2021, this is of relatively minor importance, but it is nevertheless good for those of us living with diabetes to have a small piece of good news to greet the new year, and a welcome reminder that the NHS continues to move forward and evolve policy even in the midst of the Covid-19 Pandemic, its biggest ever challenge.

I hope that this post can answer a few questions, give everyone living with Type One Diabetes something realistic to look forward to in terms of improving their well-being, and as I have always done since becoming involved in a small way with the diabetes community, can do something to widen access to the benefits of a small but life-changing device.

A couple of formalities before I move on:

Firstly, a disclaimer: I am able to review Libre 2 at this early stage having been provided with two sensors and a reader by the manufacturers Abbott. I am one of a number of UK users to whom this opportunity has been offered, with no strings attached other than a requirement to disclose that fact. I have been part of this group since early 2015, having been one of the first in the UK to use Libre after its launch in late 2014. I was able to afford to self-fund it at the time, and as soon as I started using it, found it to be the single innovation which could most improve my life with diabetes. I wrote good things about it on social media and in a blog, and was subsequently contacted by Abbott to ask if I could feature in some promotional material, and was invited to gatherings of people with diabetes to share knowledge and opinions across different countries. We have never been asked to endorse or advertise Abbott's products. I have always been acutely aware of my good fortune, and have tried to use it to help spread the benefits of Libre as widely as possible, and that remains the case with this latest new version.

Secondly, a caution: the roll-out of Libre 2 is under way, but at a time when the NHS is under extreme pressure, and it is perfectly reasonable if HCPs are unable to prioritise requests to switch to it, or to deal with queries and concerns. If you read on, you will see that I am very positive about it, but I am at present unsure whether I will be able to get Libre 2 sensors on prescription straight away. I shall ask, but with a clear expectation that I may have to be a patient patient. Please show patience and understanding if you can't get it; it's great, but you can live without it for a few more weeks while greater needs are attended to.

So what is there to say about FreeStyle Libre 2?

Well relatively little to be honest - and that's a good thing! It's the Libre that millions around the world have grown to know and love, but with what many saw as its main weakness now addressed: it can warn you when you're going low or high. In that sense, it is much closer to a “true” CGM than Libre 1 and therefore a big step forward. And it's still free to those who meet the criteria.

The sensors look the same, come in the same familiar yellow box with a different name on, and are applied with the same applicator. Out of the box, it is impossible to distinguish a Libre 2 sensor from a Libre 1 one. Crucially, they cost the same, so no CCG or doctor should have any reason to delay or refuse a switch on cost grounds.

You don't even need a new reader if you've been using the LibreLink phone app, but if you want to use a reader, you do need to change it, and Abbott will swap it free of charge. I did ask for a reader, and will explain why later in this post...

You don't have to set the alarms, but if you don't set at least one of low or high, there seems little point in getting it at all! I set mine for low (it defaults to the widely accepted 3.9) but not high, and it worked faultlessly. On my first day using it, I started the sensor after breakfast and deliberately took my usual dose of insulin but with a bit less to eat (be careful if you do that; I was home all morning with others in the house!) Sure enough, my level fell and even though I knew it was falling both by how I felt and by a few swipes, I waited with excitement for the alarm. (I am easily amused). When it came, it was strident and persistent:

It would be hard to ignore or to sleep through it. A quick swipe in response to that prompt, and you immediately see what the problem is:-

So with some small satisfaction, on my first night wearing it, I turned off the 1:30 am alarm which had been on my phone for almost 20 years, safe in the knowledge that I would be awoken if my BG was falling, a problem from which I have on occasions suffered, and which twice in my early days with diabetes led to alarming (for my wife!!!) seizures. I am pleased to say it didn't go off, and I had a good night's sleep. 

PS - on the second night the alarm did go off, at 1:05, waking me and startling Mrs L. I had sort-of hoped it would, and accidentally-on purpose didn't have a bed-time snack as I normally do, despite a relatively low reading at that time. So another slightly risky induced low and it really has proved its worth.

So yes, in that sense, a big improvement in my diabetes management: one less hassle (that 1:30 am alarm was a minor irritant) and one less worry. FreeStyle Libre 2 will indeed Wake me up, before I go-go too low. There you go - a song title for this post, as always. Who needs an excuse to watch George Michael and Wham! at their 1984 best?

Any disadvantages?

Well basically that you still have to swipe and read to find out what the level actually is, although self-evidently if it triggers at 3.9 or whatever, that's what your level must be if you swipe immediately. The trend arrow (still in my view the most important feature of Libre) tells you whether it's falling sharply or gently, but if a low alarm sounds it would be unwise to ignore and do nothing. If you want warning before it gets that low, set it at a higher trigger level; I am always fine at 3.9 and nowhere near needing assistance at that level, but YDMV so others might wish to be warned before it gets that low.

Personally I would find high alarms annoying. Highs are not immediately threatening in the way that lows are, and I don't need a device to tell me when I'm thirsty, blurry-eyed and generally feeling like I've got a hangover without the pleasurable memory of a good night out. I may yet set up a high alarm, maybe at a level higher than I normally venture, for me maybe towards 20.

You can only have alarms on one device, the one you scan first at start-up. I use the phone app most of the time, but as I said earlier, I opted, with this first sensor, to use a reader as the alarms device. So why did I ask for a new reader?

Two things:

Firstly, I find it easier and more instant than the phone app. On my phone, getting a reading is sometimes a bit hit and miss as you try to hit the sweet spot of NFC, whereas the reader is always very quick to pick up a reading once it's near the sensor. I think the Libre 2 one is even better at this than its predecessor, but mine was getting on a bit (6 years old). In the night, I want quick and instant access, and keeping a reader by my bed makes it easy to check having barely woken up. Moreover, I resist using a phone at night. If you're not careful, whilst checking BG you see a message or breaking news notification that tempts you to open it, and before you know it, you're wide awake and fretting about something or someone. I choose to shut down my link to the outside world at bedtime and I prefer to keep it that way if possible.

Secondly, driving. I covered this aspect in a blog post once before (it's here) and it launched some debate and dissent. However, when I do resume driving further than the two miles to my local supermarket or pharmacy, I believe that Libre 2 will add another level of safety. I shall keep the reader on my dashboard where it will warn me if I have failed to recognise a falling BG level. (I might even set it at the proverbial “5 to drive”) and the same reasons why I avoid the phone at night apply even more when driving. Indeed, as I said in that previous post, to hold a phone for any reason whilst driving is illegal, whereas to hold a Libre reader isn't (it’s not an internet-connected communication device). If the alarm has gone off, a driver could check it with minimal disruption to concentration whilst driving, for example on a quiet, straight road, by pulling in if safe to do so, or dare I say on a straight and quiet motorway. No more dangerous than eating a sweet, sipping water, glancing at the SatNav, changing radio station or changing the heating temperature I believe.

Oh, and one more reason? It's a tasteful shade of blue, as opposed to the black of Libre 1:

So there you have it. Libre 2 is undoubtedly a no-brainer improvement on Libre 1, and I would assume any current user would wish to change as soon as possible. Those who fret about alleged inaccuracy and constantly compare Libre readings to finger prick tests will probably still find reason to criticise it, because it's still flash not CGM, so the same cautions about time lag between interstitial fluid and blood glucose apply. But remember BG levels move fast at times for anyone with T1D, so there will always be discrepancies - try pricking two different fingers a few seconds apart and you might get a shock at how even that can vary.

I remain a tech-sceptic diabetic: I have never really seen reason to seek pump therapy, let alone a looping add-on, as I find that the multiple daily injections that I administer (often well in excess of the basic 5) are of minimal interference with my life - barely more hassle than going to the loo. All the tech stuff seems more trouble than it's worth and often appears for some to become more of an absorption than the condition it purports to render easier to manage. I am famously not really very interested in diabetes, so ironically this makes me prefer MDI for now.

FreeStyle Libre does, however, liberate us from the biggest burden and frustrating paradox of diabetes, that inescapable reality of which I often speak: that the drug which keeps us alive is also, in day-to-day terms, a constant threat to our wellbeing. All we need to mitigate that threat is a still small voice to remind us when we are in danger.

I hope that most of those who are lucky enough to have FreeStyle Libre on prescription will experience a smooth switch to Libre 2 sooner rather than later, and in broader terms, I hope that non-invasive monitoring will rapidly supersede what already seems to me to be the archaic and messy practice of drawing blood from our fingers. Basic guidance from Abbott is here:

https://www.freestylelibre.co.uk/libre/fsl2Replacement.html

In conclusion, there are, as always, thanks and acknowledgements to be delivered:

Firstly, to the team at Abbott, who have brought to the market a device which is both valued by patients and affordable to publicly funded healthcare systems across the world. The company has been criticised when any issues occur, notably with sensor supplies, and the fact of their having a monopoly on a prescription device has been questioned, but in my experience, they have continued to listen to feedback, and to innovate and evolve the product in response to feedback. Libre 3, a refinement of 2, has been approved and is already on its way in due course.

Secondly, to HCPs who have recognised the potential value of having non-invasive monitoring available at an affordable cost to a mass market; they were led by Professor Partha Kar, OBE, who despite his constant claims to be “just doing his job” took on the task of getting Libre approved by the NHS and rattled enough cages to make it happen, driven by the interests of those whom he serves, not those for whom he works.

And finally to those patient voices who have in various ways made clear that Libre was a genuine leap forward in diabetes self-management. Libre was launched and expanded in the full glare of social media, and particularly in the early days, people only became aware of its existence through online communities. Early adopters like Laura Cleverly taught others about it through You Tube videos, and I for one first saw a Libre on the arms of friends like Abby Brown, Philippa Robilliard and Lindsay Wilson at the first GBDoc get-together in 2015. More recently, Nick Cahm did much to ensure that the NHS availability became much less of a lottery by his relentless number-crunching, and he has continued to be an authoritative voice on all matters Libre on social media.

The success of FreeStyle Libre has taught us much about the value of partnership and teamwork in healthcare. A good news story amidst very dark times.

Note: please speak to your diabetes care team in order to initiate a change to Libre 2. If you have any questions that I haven't answered, do feel free to get in touch via comments, or on social media.

 

 

 

Miss you like Crazy: Come back Libre!

Some say “familiarity breeds contempt” whilst others say “absence makes the heart grow fonder”: most proverbs have a converse version, and we all choose the one that best suits our argument or the moment.

This isn’t, however, a post about relationships.

It’s about diabetes technology, specifically the problem that has compelled me and many others like me to live without our life-changing FreeStyleLibre blood glucose monitors in recent days, because of supply chain problems in NHS prescription supplies to pharmacies here in the UK. I am missing my Libre sensors, and their absence has certainly made my heart grow fonder for them.

What’s the problem? Well, if you live with diabetes and use social media, you’ll know that since Christmas there’s been a significant problem with the supply of sensors, the prescribed and disposable element of a system which has in recent years revolutionised the way in which people with Type 1 Diabetes monitor the all-important levels of sugar in their blood. 

Much has been written about this device, and a campaign in the past two years led by an alliance of patients, doctors and diabetes charities succeeded in making it available to eligible patients on the NHS; many had previously been funding their own sensors at a cost of approximately £100 per month.

In case you don’t know, FreeStyle Libre is a device which enables us to see at a glance the level of glucose in our blood, thanks to a tiny filament which sits under the skin, constantly measuring interstitial fluid, which reflects closely the level of glucose in the blood. The two main advantages are that the device involves no invasive pricking of the fingers to draw blood, and perhaps most significantly, that it enables the user to see a “trend arrow” indicating whether the level of glucose is rising or falling. This is essential and potentially life-saving information.

Like many people living with Type 1 Diabetes, I had quickly become used to this device, having self-funded for 4 years then secured eligibility for prescription in April of last year. I wrote about it more than once on my blog, and played a small part in the campaign to get NHS approval for prescription of sensors, extolling its virtues on TV, radio, in parliament and to local healthcare providers. I was determined to do my bit to ensure that access to this in many ways quite simple piece of technology was available to the widest number of possible beneficiaries, and the progress made over 2019 was remarkable, thanks in particular to the efforts of Partha Kar as a professional and Nick Cahm as a tenacious amateur

So by the end of 2019, all seemed well, and many of us had become used to collecting our little yellow boxes of sensors from the pharmacy, along with our needles, insulin and other diabetes supplies.

Then suddenly, it all went wrong! Soon after Christmas, reports of severe delays and then non-availability came flooding in on social media, and I am fairly typical of the current situation as of Jan 24^th 2020: I ordered new sensors (we are allowed two at a time, one month’s supply) on January 5^th, and I’m still waiting, after 3 weeks.

Now in the grand scheme of things, it’s no hardship, and certainly not worth some of the anger and vitriol that has been apparent on social media. But then again, people feel the need to spill anger and vitriol about lots of things these days.

Of course it’s no big deal, and certainly not a matter of life and death. Before I or anyone else starts feeling too sorry for themselves, we should all take a moment to reflect on the good fortune that we enjoy in living under the care of the NHS, as opposed to in the USA, where even insulin costs are obscenely high, or in some countries where insulin is unavailable for some. A good moment to plug the charity Life For a Child and their "Spare a Rose" campaign - please donate if you can.

However, having said that, going without a luxury makes one very aware of how quickly a luxury becomes a necessity. Have you tried being without a mobile phone for a day or two? Or having to hand wash the dishes when your dishwasher breaks down? Or you clothes when the washing machine packs up?

FreeStyle Libre is much the same: my few days without a working sensor have reminded me that merely knowing the level of my blood sugar is a very inadequate substitute for knowing its direction of travel. And that trying to do a finger prick test at 2am when half asleep is difficult. Or that doing a finger prick test at any time is painful, messy and inconvenient.

But above all, that testing only a handful of times daily is hopelessly inadequate. The NHS criteria state that Libre should be available for anyone "needing" to test more than 8 times daily. 8 now seems totally inadequate, and I have badly missed the ability casually to check at any moment of the day or night. I fail to see how anyone with T1D can feel really confident if their last test was several hours ago.

And yet for 18 years, that was how I lived, and not that many years previously - as Peter Davies has so effectively reminded us - all you had was a urine test strip which told you *roughly* what your BG was several hours ago.

So my time without Libre has served to renew my conviction that where Type 1 Diabetes is concerned, the ability easily to know what’s going on with one’s blood sugar, and to learn from and react effectively and flexibly to that information, is the key to living well. I hope that once the current supply issues are ironed out, we will soon see Libre (or other similar low-cost monitoring systems) available to many more who would benefit. And surely that means the overwhelming majority of people with Type 1, and for that matter Type 2.

Meanwhile, dear Libre, I Miss you like Crazy.

I like driving in my car: glucose monitoring at the wheel.

"I like driving in my car”, sang Madness back in 1982. And for better or worse, many of us do: it may be potentially dangerous, expensive, selfish and environmentally harmful, but driving is one of the pleasures of adult life in the modern world. Passing the driving test is one of the great rites of passage of life for those of us fortunate enough to have the means to do so, and in contemporary society, the private car has given us access to choices in our working lives and leisure time that were unimaginable only two generations ago.

So the ability to drive, safely, affordably and comfortably, is something which we cherish, and any loss of the ability to do so is hard to bear. As the Royal Family recently experienced, convincing an older person whose faculties and judgement are past their best, that the time has come to give up their car and their licence is a difficult business. And for those of us who live with a medical condition which might impair our ability to drive a car, the thought of losing our freedom to drive is a painful prospect.

Thankfully, for many of us living with Type One Diabetes and treated with insulin, that prospect is one which, with good management of our condition and a bit of luck, we can avoid. Yes, we have to renew our licence every 3 years, and in so doing we have to re-confirm our fitness to drive and authorise the DVLA to check that fitness with our doctors, but for the most part, we get our new licence and drive like everyone else.

However, it’s not like everyone else, because we - quite rightly - have to undertake to check our fitness to drive on each and every occasion we get behind the wheel. In many ways, this is no big deal, given the fact that people with Type One are constantly monitoring their fitness to do anything, all day and every day.

But it’s the means by which we can carry out that monitoring which has, until recently, been one of the most burdensome aspects of living with diabetes. An accurate finger prick test requires our full attention, a washed pair of hands, the use of both hands, somewhere to dispose of a test strip contaminated with blood and a tissue to clean up afterwards. Self-evidently, this is not possible whilst driving, so people with Type One have to stop the car in order to test, as well as testing before every journey. I suspect that many of us do what I always do, erring on the side of higher glucose levels for a journey of any length - a strategy which, if repeated regularly brings its own risks of insidious long-term damage and potential complications.

So the recent decision by the DVLA to accept the use of CGMs and Flash monitors for testing our fitness to drive has been a most welcome development and a victory for common sense. Click here for a PDF of these latest, updated, guidelines.

It is clear that the information provided by CGM or Flash is not just sufficiently accurate to be regarded as a safe proof of fitness to drive but is actually far better than the snapshot figure provided by a finger prick test. Back in 2017, I produced a short report for the APPG for diabetes on this topic, showing how a Libre result with its trend arrow was infinitely more helpful - not to say safer - than a finger prick test result. This was presented to the DVLA as part of their deliberations, so I like to believe that I played my own small part in bringing about this decision.

Click here to see this document.

But what about testing whilst driving? This is a grey area, although this section in the DVLA guidelines appears to state that we are not allowed to do so:

"If you are using a glucose monitoring system (RT-CGM or FGM) you must not actively use this whilst driving your vehicle. You must pull over in a safe location before checking your device. You must stay in full control of your vehicle at all times. The police can stop you if they think you’re not in control because you’re distracted and you can be prosecuted."

I think this merits further thought and potentially some guidance and clarification. As things stand, the change in the DVLA rules speaks of CGM or Flash as an alternative to finger prick testing before driving, and every two hours thereafter to ensure that blood sugar levels are safe and stable. However, given the ease of using CGM or Flash, is it not safe, or indeed desirable, to test whilst driving? Here, we stray into more complex territory, that of driving with due care and attention. Is it safe to use and read a monitor whilst driving? And for that matter, is it legal? 

Let’s deal with the legal first: I am ready to stand corrected, but as I see it, the legality of using a CGM of Flash reader whilst driving is less than clear, with a very important caveat: the use of the mobile LibreLink App, or any other diabetes tech which uses a mobile phone, is clearly illegal as far as I can see. The law has expressly forbidden the use of any handheld communication device whilst driving, so the use of a phone for LibreLink or similar would be illegal in the same way that it is illegal to us a phone’s satnav function. See this page from the CPS which gives good guidance on the legal definitions of handheld communication devices, and as far as I can see makes clear that using a smartphone app to check blood glucose is illegal.

But of course, the FreeStyleLibre reader is not a communication device and so is it is not technically illegal to he holding one whilst driving. But is it safe? 

Well in my view, yes. I now keep my Libre reader on the dashboard (on one of those non-slip mats), where it is within easy reach and I feel that to turn it on, swipe and read is safe and helpful, provided that the driver chooses a suitable moment and road situation: stopped at lights, driving along a quiet, straight road etc. It is no different to, and subject to the same common sense rules as, changing radio station, adjusting the heating or even eating a travel sweet (my pot of jelly babies is always to hand whilst driving).

My Libre Sensor on the dashboard

Moreover, and indeed more safely, someone else can take a reading. With a Libre sensor on the driver's left arm, a passenger in the front seat can easily swipe and check, and I have already asked my wife and daughter to do so for me with me at the wheel.

Am I right in extolling the virtues of occasional checking whilst driving? I hope so, and certainly, in my own mind, I am significantly safer now than when following the previous regulations requiring a finger-prick test every two hours: I suspect that I was far from alone in being somewhat liberal in my interpretation of that rule. We all know that a lot can happen to blood sugar in two hours, and the idea of driving for two hours without knowing the current BG level, let alone the direction of its travel, seems now to be rather foolhardy, and the ability to keep tabs on that level, even whilst at the wheel, seems to me to be a very positive and beneficial development.

My thanks to FreeStyle Libre campaigner Nick Cahm for giving a second opinion on this piece: his post here was the original stimulus for my writing this post and is well worth a read.

Disclaimer: This post, like all else that I write, represents my personal views and experiences. I have no medical or legal qualifications or expertise, and all people with diabetes who drive should ensure that they drive safely and legally at all times.

Stop Me (If you've heard it all before)

Stop Me (If you've heard it all before) This is a re-edit and repeat of a post I did back in March, but the growing frustration felt by me and others, both patients and healthcare professionals, about the postcode lottery of access to flash glucose monitoring leads me to repeat myself. My habit of finding a song title for all posts led me to a lesser known song from 1976 by a somewhat under-rated artist, in my opinion one of the finest and most expressively soulful voices - Billy Ocean. Just listen to the song by clicking the link if you're already bored, or listen and read on...

Yes, you have heard it all before, but I and many others won't shut up until fairness and common sense prevail.

Diabetes is a condition, not a disease. Type One may one day be “cured”, but not in the foreseeable future in a manner which is likely to be available to people my age and considerably younger. Those of us already living with Type One Diabetes should accept that we are likely to see out our days with our unwanted friend T1D; a cure is a desirable and achievable aim, but for those yet to be diagnosed in my view.

The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on. 

A condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition which, if well managed, is not degenerative requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability as much as a disease, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability, or who are paying lip service but imposing prohibitive criteria, cite its cost yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a diabetes consultant who spoke at the Rise of the Machines event in February. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access to therapies for people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. And we are required to self-administer and regulate the effects of this potentially lethal drug without medical supervision for 99% of our time. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.

Deal??

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.