Go Your Own Way

 

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

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

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

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

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

And yet…

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

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

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

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

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

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

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

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

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

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

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

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

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

I most certainly do.

I’ll pick out three:

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

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

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

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

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

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

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

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

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

"Do the Right Thing" - Getting insulin injection technique right

Well, January is nearly gone, and this is my first new blog post of 2019. It’s been a busy time for me, and it promises to be a busy year, not least in the world of diabetes which has become such a big part of my life in retirement.

One of the things that has occupied some of my time and attention this month has been starting my role with the newly re-constituted @FIT4Diabetes Board, a group of healthcare professionals who work under that banner, supported by Medical Technology Company Becton Dickinson, to promote best practice in technique and safety for those receiving and administering insulin injections.

FIT Board Members

I was pleased, but frankly somewhat surprised and flattered, when I was asked late in 2018 to join the FIT Board as a patient representative. I am aware that I am one of the longstanding members of the online diabetes patient community, known directly or online to many fellow people living with the condition; I am also aware that I have been something of a minority voice in that community as one of those happily managing their condition by multiple daily injections rather than an insulin pump. The very nature and demographic of the online world gives a false impression of the ubiquity of pump and diabetes technology use.

Moreover, I am also very aware that I am no expert in diabetes, despite my 21 years of living well with it. Indeed, I have often said that I’m not really very interested in diabetes, nor do I have any great enthusiasm for clever technological solutions. I am very interested in people, and in doing my bit to support and contribute to the greater good, and so my participation in #GBDoc is based very much on an interest in the people with diabetes, rather than the condition per se.

However, having attended the first meeting of the FIT Board, I have realised that I do have something to contribute to this group and their work. At our meeting, we started with an illustrated presentation about best practice in injection technique: not the most comfortable viewing when sitting there as the only patient accompanied by three DSNs, two pharmacists and a GP! I watched with a mixture of amusement and embarrassment as one by one, my occasional or permanent bad habits in diabetes management were exposed:

Wash hands? X.

Change needle every time? X.

Rotate injection sites? X.

Prime the pen? X.

Wait ten seconds before withdrawing needle? X.

Dispose of used needle immediately in a sharps container? X.

OK, so some of these I am better with than others, but I doubt if many longstanding PWD could in all honesty tick every single one, every single time. My excuse? Well, it’s that life gets in the way! We’re often told that diabetes shouldn’t stop you leading a full and normal life, and I have certainly lived as full and as normal a life since diagnosis as before it.

However, “normal life” is often very busy: I think back to my hectic working days as a teacher, often in work from 7:30am until 6pm, with literally no break. Lunch was often snatched on the go, and dressed in a suit, with formal shirt and tie, eating in a crowded school canteen or grabbing a sandwich during a lunchtime meeting is not conducive to good injection technique. It’s hardly easy carefully to choose the right site, prime the pen, leave it in for 10 seconds etc. More likely grab the pen - untuck shirt under table - jab - pen back in pocket with top on over needle. And all that was until very recently (with the arrival of FreeStyle Libre) preceded by a messy finger prick test!

I am also very aware that discreet and hurried injecting is, rightly or wrongly, rather easier for a man than a woman: a dress and tights, still commonly a staple of formal dress for women in the workplace, gives no opportunity for easy, dignified exposure of a suitable injection site, and it is small wonder that many women with diabetes inject through tights – far from ideal, but a pragmatic compromise.

But does it matter?

Well, since my watching that awkward presentation at the FIT meeting, I have to say yes. Confession time: I have become very aware that the flabby bits above my waistline are not just a touch of middle-aged spread, but actually a textbook example of Lipohypertrophy, lumps under the skin caused by accumulation of fat cells at the site of insulin injections. Not life-threatening, far from the worst of the secondary issues which can arise from living with diabetes, but nevertheless  a very real and creeping threat to living well on insulin injections.

I wonder whose tum that is?? !!

Lipos develop because of poor site rotation over the years, and injecting into them significantly reduces the effectiveness of insulin, caused by irregular and incomplete absorption rates. Since that meeting two weeks ago, I have been carefully avoiding those over-used sites, and guess what? My insulin requirement has fallen, quite significantly!

I genuinely think that Lipohypertrophy is the Cinderella of diabetes issues. We PWD are all so bothered about avoiding hypos, dealing with the uncomfortable highs, pursuing elusive “flat lines”, over-reacting to the TMI that many of us now get from our Libres and CGMs, that we overlook the insidious damage that we are doing to our too-easy-to-reach tummies.

And judging by the responses to a quick Twitter poll that we did after the meeting, checking our injection sites and advising on injection technique are a frequently missing part of our consultations with HCPs in clinic.

Perhaps it’s time we all started to think rather more about injection technique, site rotation, size of needles etc. I spent the first 20 of my 21 years with diabetes using the 8mm needles that were the norm back in 1998, blissfully unaware that current thinking among experts is that 4mm are best for everyone, regardless of their BMI. And whilst my eyes are screened annually, my feet jabbed at every visit, questions asked about my “control”, my highs and lows, my erectile functioning, etc., nobody has ever asked about, let alone examined, my (frankly rather unattractive) midriff.

So please look out for tweets and posts from my wonderful colleagues on @FIT4Diabetes. They have been brilliant in not making me feel guilty about my own shortcomings in technique, but I have to say that, thanks to them, I’m going to try very hard to Do the Right Thing.

There you go, a title for this post  - from a song, as always: a classic from the heyday of Mick Hucknall’s Simply Red. Click on the title and enjoy a bit of 90s nostalgia, then sing it to yourself while you inject.

Please Don't Let Me Be Misunderstood: keeping it simple

I’m just a soul whose intentions are good: so I want to start this post with a heartfelt and sincere disclaimer: this post is NOT having a dig at any group or individual, although I would fully understand if anyone felt that way.

I don’t do tribalism, and I think it is one of the saddest aspects of the contemporary world, not least here in the UK, that we seem to have become increasingly polarised and tribal. I feel very strongly about the political issues with which our country is struggling right now (autumn 2018), but I recognise and understand that others feel equally strongly the other way. And I still feel that in almost any situation, what unites is stronger than what divides, especially if you take the time to sit down, listen and empathise.

Such is the situation with diabetes. There are times when attitudes to diabetes can seem very “tribal”, and in the years in which I have connected with other people with diabetes online, I have seen many instances where there are clear divisions in how people feel about their condition and deal with it. Such divisions are often implicit and overlooked, but on occasions they come to the surface and result in the same sort of hostility and tribalism that afflicts politics, religion, sport, fashion - everything, in fact.

So why the disclaimer and long preamble? Well it’s because this post seeks to speak up for those living with diabetes who choose, or indeed are compelled by circumstances, to manage their condition without any technology beyond insulin pens and a device with which to monitor their blood glucose level. People for whom an insulin pump, let alone one combined with a DIY application to create some sort of artificial pancreas, is either an unreachable dream or simply something they don’t want or need.

I am, with one important exception (more of that later), one such person: I read the admirably enthusiastic and learned tweets and posts about diabetes tech with a paradoxical mixture of fascination and indifference. I am fascinated by what can be done, by what others have achieved through their own enthusiasm and expertise, yet not interested in embracing it for myself. I am on multiple daily insulin injections, always have been, and whilst I would “never say never”, it is hard to envisage a situation in which I would ever be offered, let alone accept, an insulin pump.

My diabetes story is largely one of being “perfectly well, thank you” - to the extent that for the first fifteen years or so of living with diabetes, I largely downplayed it and did little to connect with the world of diabetes beyond my own immediate needs. However, once I started to talk to and meet with others living with diabetes, my eyes were opened to how things could perhaps be different, and it suddenly seemed to me as if everybody else was either on a pump or trying to get one. Having become friends, online and real life, with other Type Ones from all over the UK, Europe and indeed the world, I have at times felt quite the dia-luddite in a group of pumpers, watching in awe as my friends discreetly tweak controls, check numbers and change cannulas. Some of the conversations I see or hear leave my head spinning, and when I recently saw the fabulously comprehensive online dictionary of diabetes technology, I realised just how little of it is of any relevance or even interest to me.

But therein lies the reason for my writing this post: I sometimes feel that the very fact that there is so much to discuss and enthuse about in the world of pumps, CGMs, looping and APS means that those of us who are happy and well with injections just sit quietly in the corner of the dia-room feeling left out, stupid, or both. We even feel perhaps a little guilty that we can’t be bothered (for that is in many ways how I feel) with anything more than a couple of pens, a monitoring device and a basic knowledge of how food and exercise affect insulin requirement.

So what is the exception to which I referred earlier? Well of course, it’s my enthusiasm for something that can tell me more than a snapshot of my blood glucose level, obtained at the cost of some pain and inconvenience. And for me, that is, of course, the FreeStyle Libre flash glucose monitoring system.

I have said this in a previous post, but I well remember at the first real-world meet-up of people with diabetes (#PWDC15) when Lis Warren, 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. She said that CGM was the one thing that she would have been prepared to “mortgage her house” to get her hands on. Now a lot has changed since 2015, most notably with the success of Abbott’s flash monitoring device leading to its admission to the NHS tariff, but I think that there is an important point to be made here, particularly since my own enthusiasm for Libre might seem to be at odds with a post which appears to eschew diabetes technology.

My point is this: there are many who have criticised the Libre and questioned its admission to the NHS tariff, citing inaccuracy compared to “true” CGM, and its lack of alarms (which will to an extent be addressed by the forthcoming Libre 2), but to me, this is precisely the point. FreeStyle Libre is a good fit for my  ”keep it simple” approach to diabetes management. Yes, it is indeed a relatively low-tech piece of tech, with self-evident limitations, and that is why it has been adopted, relatively quickly, by our cash-strapped NHS. I can’t afford a “true” CGM, and neither can the NHS.

So what am I saying? Well I guess it’s me being my usual equivocal self. I want to speak up for those who manage diabetes the “old fashioned” way, using injections, and in the UK at least that is still the vast majority of Type Ones. Let's not forget that, particularly as the online world of #GBDOC might suggest otherwise. However, I also want to stress that even for those of us who embrace a low-tech approach, there is room and need for a little technology in our lives. But not so much that it takes over our lives.  In the end, I’m really not very interested in diabetes.

There, I’ve said it: but please, Don’t Let Me Be Misunderstood. There should be room for technophiles as well as technophobes: pumpers, loopers, prickers, injectors and even flashers (!)  have their place in the world of diabetes management, and those who can afford the cost and time have a right to choose that way for themselves or indeed for their children. But those who prefer to keep it simple have a right not to feel left out or guilty.

We all have our own way of dealing with this complex and demanding condition.

Needles and Pins: Multiple Daily Mini Injections

One of the most annoying things you can hear as a Type One Diabetic is when people say “Oooh, I couldn’t possibly inject myself every day, I can’t stand needles”. The answer is pretty obvious and invariably said through gritted teeth: “Errm, I think you could if the alternative was death”.

Needles and pins-ah. It’s part of life with diabetes, and to those of us who have that dubious pleasure, jabbing sharp bits of metal into our fingers, tummies, thighs and bums is all part of the fun. I don’t like needles  - does anyone? - and despite the fact that I inject myself four times daily and often far more than that (more of that later...), I still don’t like ordinary injections. I look the other way when I have blood taken from a vein and the idea of injecting into a vein, as drug users choose to do, still makes me shudder. But yes, finger prick tests and insulin pen injections are just part of my world. I calculate that I’ve done towards 30000 injections in my 19+ years with diabetes, so to say it’s no big deal is a fair assessment of my attitude.

My faithful pen and needles: bolus (left) and basal (right)

I’ve been thinking about injections quite a lot recently – not that they can ever go that far from my thoughts. Until I started interacting with other people with Type One, thanks to the #gbdoc a few years ago, I just took it for granted that injecting insulin was the norm for me. I was vaguely aware of the existence of pump therapy, but knew nothing about it, didn’t know anybody who used a pump and assumed - without being told so – that pumps were not for people like me. I certainly heard no mention of a pump from my healthcare team, although to be honest I didn’t hear much from them at all. I was a “good” patient with “good” control, so was just left to get on with it.

However, once I started to talk to and meet others living with diabetes my eyes were opened to how things could perhaps be different. The fact that a disproportionate number of my “diabuddies” are younger than me probably warped the statistics a bit, but suddenly it seemed as if everybody else was either on a pump or trying to get one. I spent a weekend in Stockholm in June last year with a group of Type Ones from all over Europe and felt quite the dia-luddite in a group of pumpers, watching in wonder as my friends discreetly tweaked controls, checked numbers and changed cannulas. Conversations - real life and online - often suggest that being on a pump is easier and better, allowing the user more accurately to replicate the response of a working pancreas.

And yet.......I am absolutely fine. I’ve lived with Type One for all these years armed only with a couple of pens and a “guesstimating” method of calculating (no, I’ve never been taught to carb count, and never been offered a DAFNE course), and I seem to have coped pretty well. I started to look a bit more carefully at what my fellow Type Ones do and realised that if I watch and listen, pumps aren’t quite as ubiquitous as I thought. 

A few days ago, I was enjoying one of those wonderful occasions which many of us have enjoyed in recent times, meeting with a group of fellow diabetics. We were in Manchester for a meet up and meal based around the Diabetes UK Professional Conference. I was sitting next to my friend Emma, an outspoken, strong-minded and witty member of the #gbdoc and was enjoying finding her such a good match in the flesh to her feisty online persona. But I couldn’t help noticing that she injected herself several times during and even after our pizza meal. We were so busy chatting about other more interesting stuff that I never got round to asking her about her injection strategy.

For a start it was quite refreshing to see a young woman injecting and not pumping. Recent experience had suggested to me that virtually all Type Ones, especially the younger ones, were on pumps. But more striking for me was that Emma was apparently micro-managing her insulin with follow-up injections - just like I have recently started to do. (By the way, I have subsequently spoken with her on Twitter about her use of MDI, and got her permission to mention her in this post)

I’ve certainly started doing things that way, entirely off my own initiative, over the past year or so. I’ve even given it a name: MDMI – multiple daily mini injections. The additional M for mini is for the extra ones I add if the main pre-meal bolus hasn’t been enough. 

There’s a lot of Ms, Ds and Is in my life: Multiple Daily Injections for my diabetes, then in my working life as a university entrance advisor I know all about Multiple Mini Interviews, the increasingly common method of assessing students applying to Medicine and Dentistry courses at university. Candidates are subjected to a succession of interview “stations”, each one addressing a different aspect of the many qualities required of a good doctor or dentist. It’s like speed-dating, but deadly serious. So with MDI in my day-to-day life and MMI in my professional life, a new label of MDMI came to my mind.

So is MDMI a good alternative to pump therapy? Is it any better than MDI, or basal-bolus as it’s sometimes known, with its more vigorous and unvarying approach to dosage and timing? Well, all I can say is that I like it, and it works for me. I honestly can’t believe that a pump is worth the bother. I see people fretting about where to keep the pump, set changes, basal testing, TBRs and other hassles. For me, a quick jab with a pen seems less faff. In between injections, there’s nothing attached to me, no dangling tubes, no air bubbles.

Adding the extra 'M', the mini correction doses, is a recent refinement that for me seals the deal of preference for MDI. I inject conservatively before eating, then top up an hour or so afterwards if needed. Using this strategy, my average glucose level has fallen, my percentage time in target has increased and my estimated hBa1c is continuing to fall. How do you know, I hear you ask? 

Well if you know me, you’ll see the answer coming a mile off. I’m a known fan of the FreeStyle Libre flash glucose monitoring system, and I have to say that it’s because of the easily accessible knowledge of what my BG reading is and where it’s heading that I can micro-manage my insulin so effectively. I’m very aware that having this knowledge costs me about £100 a month, and that I am lucky that I can (just about) afford it. If I have one wish for my fellow diabetics it’s that the NHS recognise how effective the Libre can be in giving patients the information they need in order to manage their condition more effectively, and allow it to be available on prescription. 

Meanwhile, it’s Needles and Pins for me, not Pump it Up. Click on the links to hear the songs.

But one final thought: PLEASE don't think I'm having a go at pumpers. Many of the wonderful friends I've made through the #gbdoc are enthusiastic and experienced pump users, and I have watched  in admiration as others have started out on the challenging journey of pump use. As with so much else in life, it's a matter of taste, choice and circumstances. We are each entitled to treat this challenging condition in the way that suits us best.

Disclaimer: Please note that this post represents the musings of an unqualified patient, not a healthcare professional. Just because an insulin regime works for me doesn’t mean it is right or will work for others. Insulin is what keeps us alive, but can also be very dangerous if taken in the wrong dosage and/or at the wrong time. If in doubt, consult your healthcare team before making changes to your regime.