We Can Work it out

I freely admit to being conflict-averse. Some would say annoyingly so. There seems to me to be so much discord, conflict, and argument, so many angry words and deeds in this world, that I see no possible benefit to me or to anyone else in picking fights, metaphorical or literal, with anyone, unless absolutely necessary.

Easily said and arguably complacent, I know: I am well aware that I am fortunate in having been born and raised in a stable family, and I enjoyed the benefits of a good education, leading to an enjoyable and safe career. I have also enjoyed the stability of a 38 years-and-counting marriage, blessed with three lovely and loving adult children. I am lucky enough to still live with two of them, and a fab daughter-in-law. I am also blessed with friends of all ages drawn from a life surrounded by good people. 

I therefore perhaps have rather less to be angry about than many in this far-from-perfect world.

However, it seems to me that there is a lot of anger around at the moment, both in a wider world which has become significantly more polarised and tribal in recent years, and also in the social media bubble in which I have chosen to spend some of my time in recent years - the one inhabited by (a very small proportion of the total of) people who live with diabetes.

I spent four days this week largely absent from Twitter and Facebook, having taken a short holiday staying with some old friends who live in deepest Norfolk in a house with unreliable Wi-Fi and intermittent 4G. I didn’t try to take a “digital detox”, but found myself confined to just an occasional look at social media (usually provoked by a notification when out and about), without the means easily to reply or get involved in any prolonged exchanges.

It turns out I inadvertently chose a good few days to take this unplanned break: returning home to a catch-up on my accounts, I saw much hostility, notably the justified but arguably excessive and misdirected anger about Paul Hollywood’s ill-advised “diabetes on a plate” quip from Tuesday’s Great British Bake-Off; a simmering row involving many about the nature and extent of the problem surrounding healthcare professionals’ use of language in talking to and about the people in their care; and finally a poorly-judged advertising campaign by Diabetes UK seeking to draw attention to the dangers posed by some of the potential complications of diabetes.

In all these cases, there is usually some merit in what is said on all sides, some justification for the anger, and some justification for the anger about the anger. What saddens me is the way in which the immediacy of our hyper-connected world causes such rapid, and therefore almost by definition, unreflective responses. And in that sense, I am grateful that my own unplanned absence from social media gave me the chance to sit back, watch and reflect, rather than piling in with my own, probably imperfect, words.

Social media, especially Twitter, is in many ways a megaphone in which those who say most, and say it loudest, can very easily be mistaken for the majority. It gives us all the means to chip in with comments which are potentially “heard” by 1000s, and it’s the easiest thing in the world to join in when you agree with something, even if in a pre-social media world you might have simply noticed, commented to those sitting with you, and moved on with your life. There are clearly many on Twitter who find it very difficult to say nothing, when often to say nothing is the most effective and powerful of all comments.

Then there’s also the pressure to make a post snappy and eye-catching, which inevitably leads to ever more extreme language. I am NOT defending Paul Hollywood, but was what he said really “vile”? Foolish, ill-advised, ignorant, yes, but not maliciously intended to hurt others. Not “vile” or “disgusting” as many chose to say. We all make mistakes and upset people, we all use words carelessly and cause hurt which we then regret: it's part of being human.

The megaphone of Twitter made sure that criticism of Mr Hollywood’s ill-informed quip made it into mainstream media, and quite rightly so, but the real villain of the piece was, as some rightly pointed out, the programme makers. I am sure that there is much left on the cutting room floor after an edition of GBBO or any similar programme is made, and it wouldn’t have taken a PR genius to spot the potential backlash to a diabetes joke.

Then what of the #LanguageMatters debate? I fully recognise that there is a continuing need for care and sensitivity to be used by HCPs in what they say to and about people with diabetes, but in my own experience of living with diabetes, I have never experienced anything beyond amused irritation at what people have said, and to be honest I have got better things to do than spend time calling out every single inappropriate word or expression used about me or others with my condition. In all areas of my life, I mind rather more about peoples’ manner and attitude, rather than what they say. The right words can be said, but the speaker may say them in a manner which betrays dutiful adherence rather than genuine empathy and concern. Just as when someone in a shop wishes me to “have a nice day” I am only impressed if their manner suggests they care about me as an individual.

I wonder how many people with diabetes or other conditions have genuinely been demoralised and demotivated by things said by HCPs? It’s very easy to adopt a reaction, having seen someone else’s, and join in the hue and cry.

It appears that “being nice” is not good enough according to some. But it’s not a bad way to live your life, and personally I think I’ll just try to be nice and hope others do likewise to me, knowing that I can’t please all the people all the time, but at least I tried. And if I’m angry, I’ll say so myself. But don’t hold your breath waiting.

“Life is very short, and there’s no time for fussing and fighting my friend” Lennon and McCartney often said some pretty profound things, so I'll call this post We Can work it Out

Little Arrows – Happy Birthday FreeStyle Libre!

If you have Type One diabetes, or someone close to you has has it,  just consider for a moment what an awesome responsibility it places upon the person with it: however well we are, we are at all times only one misjudgement away from being in serious and potentially life-threatening danger.  I don’t like to over-dramatise life with Type One, but I occasionally feel that those who don’t know Type One overlook how demanding it is. 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. Our biggest and ever-present challenge is therefore making sure that a life-preserving therapy doesn’t become a life-threatening one.

And for us to be successful in responding to that challenge, self-monitoring is what we do. All day and every day, for life. So to me, monitoring, and responding appropriately to the information received, is the key to living well with diabetes.

I have a memory from my very early days of living with Type One diabetes, over twenty years ago: my wife and I were looking at a perfectly good blood sugar reading on my meter - probably six point something - and wondering whether I needed a snack before bed. She commented that it would be far more useful if we could know whether the level was rising or falling, rather than just what it is. At the time, having this sort of information at a glance was a mere fantasy for ordinary people, but my wife was in fact visualising something which would soon become a reality, thanks to the spectacular advances in technology which we are fortunate enough to enjoy here in the developed world. She was in effect seeing into a future when continuous glucose monitoring could become readily accessible to ordinary people with diabetes.

Five years ago this week, the FreeStyle Libre flash glucose monitoring system came to the UK, the start of a process to bring that life-changing support to the likes of me. So this post is to say: Happy Birthday, Libre!

It’s easy to forget the speed of progress in technology over the past 20 odd years. At the time of my getting diabetes (December 1997), the internet was still in its infancy. I had recently acquired my first mobile phone, and we had just bought our second family PC, but there was no sense that the functions of the two would so soon merge. The computer was very much a static desk fixture, and with the help of AOL and dial-up connecting (remember that noise?) we were for the first time experiencing the thrill of being so instantly connected to the world. Emails were a novelty, but there was no notion at that time that we would so relatively soon be using the internet to connect so instantly and profoundly with other people: Facebook, Twitter and Instagram were still some years from being invented and the internet seemed like no more than a giant encyclopaedia: a very useful one, but no more than that.

Moreover, mobile phones were still new and relatively rare among ordinary people, and again we never thought that they would be anything more than just a different way to talk to people remotely. Texting had been invented - almost by accident - as a way for telephone engineers to exchange messages. It was less than 25 years ago, but the world looked a very different place before we were all walking around glued to a screen.

So in the late 1990s, as I was getting to grips with two new “things” in my life, diabetes and new technology, they were not really linked in my mind. I was lucky enough to be diagnosed after the invention of insulin and a convenient means of delivering it, and of relatively convenient meters for measuring blood sugar from a finger prick. I would have been surprised and impressed to learn that around 20 years later, I would be checking my blood sugar level whenever I wanted to, without spilling blood, and that using the same phone that could read my blood, I would be in constant indirect and direct contact with hundreds of other people with diabetes, and following developments in the treatment of my condition. 

As I have documented before, I spent the first sixteen years or so of my life with Type One diabetes in relative isolation, and perfectly happy that way; I was too busy to do any more than what was needed to stay healthy and live my very busy home and working life, and unwilling to make a medical condition anything other than a minor inconvenience. Fortunately, it remained for me just that, and in many ways still is.

The advent of social media in the mid noughties changed a lot in our world, as has been endlessly analysed. For me, joining Twitter out of curiosity, followed by a rather casual and now forgotten search for anything relating to diabetes proved to be unexpectedly significant in terms of my relationship to diabetes and my management of it.

Within a year or so of my first tentative online interactions with other people with diabetes, I became aware of conversations about something called FreeStyle Libre, which was causing a stir of interest among the then relatively small online community. I was aware of the existence of continuous glucose monitoring, indeed I had in my early days with diabetes worn some sort of large, intrusive device, on loan for three days from the hospital, to investigate my tendency to night-time hypos and associated seizures. However, this primitive device was light years away from what became readily available only a few years later.

But with FreeStyle Libre came the promise of a small, convenient and - relatively - affordable way of answering that question which my wife had put to me a decade earlier, namely not just “what is my glucose reading?” but “What’s happening to my glucose reading?” With the help of a bit of googling, I quickly realised that this device might be just the thing for me, and I excitedly went to the website to get myself one for Christmas (2014). To my disappointment, I discovered that I was merely joining a waiting list.

It was whilst waiting that I had the good fortune to attend the first national meet-up of people with diabetes at Nottingham in early 2015, organised by the GBDOC. There, as well as the surreal experience of meeting in the flesh people to whom I had been “talking” for many months, I first saw the Libre in action, worn by Abi, Lyndsay and Pippa, who had already become online friends and were about to become good real-world friends.

The email inviting me to try #Freestyle Libre

A few weeks later, I reached the front of the Libre queue, and received my first sensor and scanner. I wasn’t disappointed: at the time, I was still working in that most demanding of jobs, teaching, in which it is very common to be “on the go” for ten hours or more at a stretch with barely time to go to the loo, let alone check blood sugar using a finger prick. To suddenly have the means to check blood sugar quickly and discretely, and to know whether the resulting reading required action or not, was life-changing. The resulting ability to keep my glucose levels closer to the ideal, rather than constantly erring on the high side, as had been my habit in order to cope with that busy life, resulted in an almost instant improvement in my HbA1c level, which has been maintained ever since.

And the rest has been, well, my recent “history”: I was keen to share my enthusiasm for this revolutionary device and said good things about it on Twitter, as well as writing about it on this blog - my first post, in fact. I was contacted by someone from the manufacturers, Abbott, to ask if they could make a promotional film about my use of it on my busiest working day of the year, A-Level Results Day, of which I am still rather proud:-

Adrian Long's FreeStyle Libre Story

My 5 minutes of fame on Sky News

I was very keen to try to do my bit to ensure that this device became available to those unable to afford the £100 a month cost of sensors, and so set about using what little influence I have to support the campaign to get sensors added to the NHS tariff.  Less than two years later, in September 2017, I found myself on live TV on the morning of that campaign reaching the end of its first phase, with the announcement of the forthcoming availability of sensors on the NHS.

It wasn't all sweetness and light, of course. The inevitable backlash was quick to set in, even on that day back in 2017. Bloggers, vloggers and tweeters were quick to point out their own reservations about the system, with some condemning Dr Partha Kar who had championed the cause, for his espousal of what they saw as  imperfect technology and a waste of NHS funds. I particularly recall one sarcastic tweet on that very morning showing an image of one user’s faulty sensor reading, captioned “can’t wait to get this sort of accuracy on the NHS”. There was much ill-informed criticism of the Libre’s alleged inaccuracy compared to finger prick tests, and some armchair critics were far too quick to magnify their own unhappiness with the system into generalised condemnation of it. Most of these critics have now gone rather quiet, their noise drowned out by the 1000s of people with diabetes and parents of children with diabetes whose quality of life has been significantly improved by this little device.

6.5 with downward arrow:
so much more information

The FreeStyle Libre isn’t for everyone, but it has proved to be a massive help for many, and by far the most cost-effective way of helping 1000s of people better to understand what happens to their glucose readings, and so better to manage this mercurial condition. Yes, it isn’t “accurate” in that it doesn’t give a definitive reading of the current glucose level (but neither does a finger prick test - try doing two tests on different fingers!). Yes, it doesn’t (yet) warn of an impending hypo. Yes, sensors do very occasionally fall off before the end of two weeks. But to know the direction of travel of blood glucose is a hugely helpful innovation.

But the fact remains that many of us are now far better informed about our condition than we were without this information, and there is already powerful evidence from impartial and well-informed sources indicating that lasting longer-term benefits are starting to accrue.

My own pleasing stats,
after a few years of Libre

I would be remiss of me to post this piece without including acknowledgement of the significant contributions by so many to the success story that is FreeStyle Libre: the team at Abbott and in particular Jared Watkin, who led the original research team behind Flash Glucose Monitoring; the many innovative and forward-thinking doctors and nurses, led by Professor Partha Kar, who did so much to push for rapid and widespread adoption of flash monitoring; the NHS, who with overall commendable speed recognised the longer-term health and cost benefits of the device; the diabetes charities, JDRFUK and Diabetes UK, who recognised the value and potential benefits to patients and campaigned accordingly; and last but by no means least, the diabetes patient community. The Libre was launched in the full gaze of a rapidly expanding online peer support community and there can be no doubt that its success and growth was driven in no small measure by online content: blogs, vlogs, tweets and groups. Once its value had been established, the campaign to get it onto the NHS prescription tariff was conducted to an unprecedented extent on social media, driven by an alliance of HCPs and users, notably Nick Cahm, whose relentless gathering of prescription data did much to help equalise access.

Prof Partha Kar, Nick Cahm & me

A piece of plastic the size of a £2 coin stuck to your arm and a smartphone have certainly changed the lives of many. And those Little Arrows truly tell us a good deal.

Anyone remember that song?

Disclosure: Whilst I have no official affiliation to Abbott Healthcare, manufacturers of the FreeStyle Libre system, I have been invited by Abbott to participate in their international DX events for people living with diabetes from across Europe. 

These events serve no promotional purpose and at no time have I, or other participants, been asked to promote the FreeStyle Libre or any other Abbott products.