Ride My SeeSaw

There's no shortage of metaphors to describe life with Type One diabetes, so no shortage of song titles for my diabetes-related posts. It's all about balance, so let's say this one is all about trying to Ride my Seesaw, and the Moody Blues had a song for that. Click on the above title, for one of those "so uncool it's cool" videos.

I sometimes think it has all been said already about Flash Glucose monitoring, but I hope that this post might just help those working in CCGs around the UK in their deliberations on whether to approve access to FreeStyleLibre sensors on the NHS for people living with Type One Diabetes.

In personal terms, I live in an area where a policy is “under review” and I am cautiously more optimistic of a positive outcome having had the opportunity to put the case to the CCG at a public meeting a few weeks ago.

But in less selfish terms, I was dismayed last week when a good friend of mine from the diabetes community (living in West London) told me that she had been informed by her GP that she would no longer be prescribed FreeStyleLibre sensors, because they are “too expensive”. The woman concerned is herself a Type One who cares for her 5 year old daughter who is also Type One, and she had initially been prescribed sensors for herself and her daughter.

In other areas of the UK, she and her daughter would both be eligible for sensors on the NHS and would be benefiting from more frequent, non-invasive testing, more detailed information about the direction of travel of blood sugar levels and graphical data enabling her better to manage her and her child's sugar levels, thereby reducing the risk of serious and costly complications in the future. And equally importantly in my view, doing so with less mental and emotional strain. All at a cost to the NHS which is very modest compared to that used for many commonly prescribed drugs and treatments for other medical conditions.

So why does this matter? Are we being treated unfairly or are we, as a BBC journalist who interviewed me recently put it “just after the latest gizmo”?

Well, I have been a self-funding FreeStyleLibre user for over three years, and this past week, a little bit of Libre-assisted self-management on my part brought the issue into focus for me, making me realise how hugely beneficial even this relatively unsophisticated piece of kit can be.  It enables us to keep blood sugar levels close to the desirable range and more importantly to prevent longer term average levels from creeping upwards, causing the sort of insidious damage which can and does lead to serious complications.

Let me explain: I had a very busy two months in May and June, returning to my former place of work for a stint as an exam invigilator along with a number of one-off events including a five day visit to France leading a twin town delegation (driving there and back) and a two day filming assignment in London for a forthcoming appearance on BBC TV's “Pointless”. During this time, I must confess that my diabetes management reverted somewhat to the strategy that I used throughout most of the first sixteen years of living with the condition: I allowed my BG levels to err on the high side, aware that this would minimise the risk of inconvenient, embarrassing or even dangerous hypos.

This is a perfectly reasonable strategy given that I was appearing in a primetime TV quiz show, driving a 1000 mile round trip and invigilating public examinations at various times, but it is frightening how quickly a bit of neglect of tight control pushes averages up. Without FreestyleLibre and its detailed feedback, the upwards creep of averages would probably have gone unnoticed until an HbA1c result at a clinic review. And of course subtle damage is already under way whenever blood sugars are out of range for any length of time.

But for those like me who can use it wisely without becoming over-obsessed with every twist and turn of blood sugar, the FreestyleLibre is an invaluable source of information, a sort of Dia-Jiminy Cricket who can act as a conscience if things are going astray. A week or so ago, I looked at my average BG and noted that it had crept up to 8.9, having typically been around 7 since I started on FreeStyle Libre 3 years ago.

So last week, which was significantly less busy than the previous few, I resolved to improve things. I decided just to keep a closer eye on my blood glucose, to check levels a little more frequently and to react to them with correction bolus doses or snacks. Nothing clever, no elaborate calculations: just a common-sense response to some easily interpreted data presented on my phone screen.

And guess what, in just one week, things got better. Look at these screen shots, firstly this one showing the 90 day average, with the tell-tale orange bars reflecting those higher-than-desirable levels of recent busy weeks:

And secondly this one showing the results of my week of more intensive checking and reacting, with the green bars showing a significant improvement and the average at 6.7, down from 8.4:

Could this have been achieved with conventional finger prick testing? Theoretically yes, but in practice no. The ease of frequent testing, the instantly available average data, the trend arrow to enable safe and effective reactions to impending highs and lows are just not possible without a FreestyleLibre.  And yes, the inner child who is never far from the surface in this 60-year-old me, rather enjoys the reward of seeing those green bars, like getting merit stickers from a teacher. I'm easily pleased and amused.

But perhaps most significantly, it’s the fact that it helps me to self-manage my short and long-term well-being. And if it’s cost that is causing some CCGs to either refuse to prescribe, or to impose ridiculously narrow criteria, then they should perhaps consider that helping and encouraging people with Type One diabetes to self-manage their condition with the help of a relatively cheap piece of technology is a very sound cost-saving investment.

LibreLink: First Impressions

My enthusiasm for the FreeStyleLibre flash glucose monitoring system is well known amongst the online diabetic community. As soon as I became aware of its existence in early 2015 (thanks entirely, it must be said, to the #gbdoc, and no thanks to any input from healthcare professionals), I immediately saw that here was a potentially massive leap forward in our ability to regulate our blood sugar levels more responsively, tightly and safely than had been possible with traditional fingerprick testing.

I have already enthused about the device in this post written soon after I started using it, moaned about the fact that I have to pay for it in this post and featured in this film made for Abbott about a busy day in my life, and how the Libre helps me to manage my condition on even the busiest of days. I even found myself travelling to Stockholm in Sweden at the start of June this year, to attend a diabetic bloggers' conference with other Libre users from around Europe. I should at this point pause to say that Abbott financed this trip for me and all the others, but with no requirement to praise the device in return. My love of the FreeStyleLibre is entirely voluntary.

I have now had the opportunity to try out the next phase in its development, namely the use of LibreLink a mobile 'phone app which allows users to replace the small scanning device which has hitherto been the partner of the sensor with their own mobile phone.

My impressions are basically very positive. LibreLink means no need to carry a scanner around. The scanner (the size of a small pre-smartphone mobile) had become another device to fret about in terms of where you keep it, how often to charge it, and how to avoid losing or damaging it - it was, in effect, like having a second mobile.

More importantly, it gives far more detail and clarity thanks to the use of a full-colour smartphone screen, and far more data thanks to the smartphone's processing power. For example, it turns green for in range and amber for out - there's also a red, but fortunately  I haven't seen much of it yet! In effect, it gives the more detailed data that previously had to be downloaded from the scanner onto a laptop or PC, notably providing a constantly updated estimated Hba1c reading. It can also be used to link with Diasend enabling the sharing of data with others, notably a healthcare team (although my own team are light years away from this sort of thing - another story altogether)

The only disadvantages I can see are minor, outweighed by the benefits, and not the fault of the app: firstly, it does rely on the quality of the phone's NFC capability, and with mine this requires a slower and more careful swipe than is needed for the FreestyleLibre scanner. Not a problem once you get used to it, and I suspect that NFC capability will advance in future phones. Secondly, of course, it depends on the phone having a battery charge, and as we all know, smartphones can drain quickly, so if you've been out and about and using the phone a lot, you might find it running out just when you need it (as far as I can tell, the app itself uses very little charge, so it will happily run on a very low battery). Thirdly, it is only available for Android phones at the moment - but that's because other platforms - notably Apple - won't allow it yet!

The first two of these drawbacks lead me to another point that is a bit fiddly but important: you can still use both the LibreLink and the scanner but they both need to be activated within 60 minutes. This means sensor first, then phone. You then have to be sure to use each one at least every 8 hours or there is a gap in data on one or the other. Both devices show identical readings in my experience so far, which is good to know.

I have found that I use the scanner at night - it's faster and quicker, and you don't have to "wake up" your phone.

Otherwise, that's it! Clearly a great advance, clearly the future, in that we are all addicted to our phones so might as well use them for monitoring as well. And like the Libre with scanner, I find people are really wowed by it, and I enjoy showing it off. Libs herself (the scanner) has just become a sort of techie teddy bear whom I keep by my bedside.

I must once again applaud Abbott for their innovation in blood glucose monitoring. It is very hard to imagine "life before Libs", and I only hope that in the near future the NHS will realise how much this device can contribute to the long and short term well being of diabetics - and save themselves some long-term cash!!

Hi-Ho Silver Lining

Like an essay handed in at the last minute, here is my offering for #DBlogWeek.

It's been a busy week for me at work and at home, so not much time for blogging, but having been invited to a conference in Stockholm for diabetic bloggers, I would feel bad if I let the week designated for DBloggers pass by unmarked by me.

So here are a few, not very original, thoughts arising from my unexpected invitation from Abbott to a be part of a gathering of bloggers from across Europe in Sweden's Summer Night City at the start of June.

I put out a tweet this past week saying that the #GBDOC was "the silver lining of the cloud of diabetes". Unsurprisingly it got some likes and approving comments, which is hardly remarkable - flattery will get you anywhere!

But I do mean it. For about 16 of my 18 years with diabetes, my attitude to the condition was one of "just get on with it". I couldn't be bothered with it, to be honest, and so just did what was necessary to stay well and enable me to live my life much as I always had done. I was pretty successful in so doing, and therefore had no want or need for much support from others. I certainly wasn't very interested in talking about it and had no particular interest in meeting others with the condition.

Nobody, therefore, is more surprised than me to find myself now so involved in the wonderful online-based but very real world of the #GBDOC. Like most of its users, I am unclear how or even when I started to get involved, but I know that I am now a fairly prominent presence in a community of people united by their affliction with an ever-present, incurable, but ultimately manageable condition.

Through this community, I know that at almost any time of day or night, I can say something on Twitter and someone, somewhere will respond in a friendly and positive manner. And if I, or anybody else, tweets anything that remotely suggests unhappiness, discomfort or difficulty, it is certain that others will be quick to offer help, support, advice and good humour - and in saying that, I hope that I am as much a provider of that support as a recipient of it.

This, then, is indeed the silver lining to the cloud that threatens to block out the sun from our lives. I cannot now imagine life without such easy access to friendship and support, and I regard the #GBDOC as a great vindication of the often-maligned online world, in that those I have got to know through the filter of social media have invariably turned out to be just the same in real life as they are online. Many of us have met up in real life, notably at two successful national meet-ups of the #GBDOC, and of course in a couple of weeks' time I will be joining some whom I already know and others whom I don't at a European bloggers' event.

It is truly remarkable where diabetes and Twitter have taken me, and I cannot help but smile when I think that just because I chose to associate with a few fellow sufferers from diabetes, and to sing the praises of a new glucose monitoring device - the FreeStyleLibre - I am about to be flown to a country I have never visited before to meet with people I don't know, or I haven't known for long, to spend a couple of days talking about a condition that I spent sixteen years trying to ignore. 

Such are the serendipitous, and sometimes welcome, twists and turns of life, even at the age of nearly 60. Thanks to diabetes and the #GBDOC, my horizons have broadened, and I have new friends of all ages at a time in life when often the number of friends and contacts tends if anything to decrease. And all because I suffer from an annoying, very dangerous, ever-present and incurable medical condition. For me at least, the cloud of diabetes does indeed have a silver lining for which I am humbly grateful. Hi-ho, Silver Lining !

"It's not Fair"

This post takes as its title a phrase I instinctively dislike and use very sparingly: "It's not fair". It's a great song title (thank you Lily Allen), but apart from that a rather futile protest.

Very little in life is fair - as a teacher, I slap down complaints that something isn't fair with a riposte stolen from one of my own teachers years ago: "if life were fair, I'd be good looking!" That always takes the wind out of pupils' sails, and in any case as a teacher, I have always tried very hard to be fair. Apologies if you are an ex-pupil reading this and you disagree.

However, diabetes - especially Type One - isn't fair. It strikes randomly, and once the fickle finger of fate has chosen you, it is unrelenting. It never gets "better" or "worse" - it is just a question of how successful the unfortunate victim is at dealing with it. And that success or lack of it is very often beyond your control - especially, I feel,  for children, adolescents and women, for whom other unavoidable things like growing and hormones take an unwelcome delight in interfering with management of diabetes.

I don't get down about my diabetes. I am lucky that I lived 40 years without it, and have lived the subsequent 17 years in pretty good shape, all things considered, still able to live a full and active life, doing all that I want to do, within reason.

However, I did have an "it's not fair" moment this week, when on the same day, I ordered a new set of Freesyle Libre sensors (cost £101.52 inc postage - precisely 4 weeks supply) - and a repeat prescription for all my usual diabetes stuff (insulin, needles etc). I realised as I ordered the prescription that I had used virtually no test strips since I started using the Libre. I didn't need any tests strips, so an item worth just under £60 was not on my prescription: I was, in effect, saving the NHS that amount because I am spending £100 a month on a Libre.

I have started using the Libre at the same time as several fellow T1's from the GBDOC community, and I think I speak for all users of it, and indeed those who are using more expensive CGM, that the amount of information we get about our blood glucose levels is light years ahead of the "snapshot" provided by a one-off test. I don't yet feel that it has actually improved my health, but I am very sure that it is helping me better to understand the subtleties and infuriating  complexities of the relationship between food, exercise and insulin. And in so doing, I will inevitably get better at avoiding the lows, and especially the highs, which are such a threat to my long-term wellbeing. This will save the NHS money in the end.

On the right is a recent reading, showing a pretty good overnight (sorry to be smug). Taken after breakfast, it also illustrates wonderfully how injected insulin deals with what has been eaten at breakfast, and how the libre warns me that I need to be aware of a fast-falling blood glucose level and take in some more carbs before the day is much older.

So I hope that perhaps those who make decisions about what is and isn't available on prescription will give serious consideration to making the Libre - at least the sensors - a prescription item. Yes, I know the NHS is hard-pressed, but I am pretty sure that a well-observed response to Libre readings would quickly pay for itself.

Meanwhile, I will continue to generously save the NHS £60 a month by hardly using any test strips, and will spend £100 a month of my own money so that I can continue to monitor my own blood glucose better than any doctor or nurse is able to. I'm not convinced that's very fair.....

Please share this blog post if you agree.

What's going on?

This is my very first blog post. I have been wanting to start a blog for some time, inspired not least by some of the wonderful efforts by fellow diabetics, some of whom are a lot younger than me and put me to shame with the quality of their writing. I would cite in particular Ellie Huckle, Nichola Davies and Jules Edwards who have become good Twitter friends.

Given that I enjoy writing, it seems perverse not to make use of my ability to write for an online audience of people who know me and people who don't. Some of my diabetic Twitter friends have been encouraging me to do a blog, so here it is!

My blog is therefore inspired by fellow diabetics, but I don't want diabetes to define me, and I certainly don't want to become a "diabetes bore". I would like my blog to reflect the eclectic nature of my interests, indeed of my Twitter profile, so I will try to write about a variety of topics over time. However, I will start with a diabetes related topic, as diabetes has been a big part of my life in recent weeks, in a very positive way. I am nothing if not positive by nature, so I hope that some positive musings will be of help and interest to somebody.

So, as Marvin Gaye once asked - What's going on? Well, with regard to diabetes, it's the quantum leap forward that is FreestyleLibre which has given me the chance to get closer to the answer to that question. This wonderful, but rather expensive, piece of kit is telling me more about what's going on in my pancreatically-challenged body than I have hitherto dreamed of knowing. 

I have lived with Type One Diabetes since 1998, which means that I have lived about half of my adult life with the condition. Perhaps that merits a little further explanation: If you consider the "adult" world to be the world of work, the world beyond being a student, or even the world beyond marriage, then I became a proper adult in 1981, when I left university, got married, and started work as a teacher. That was 34 years ago, and after 17 of those years, I developed Type One Diabetes out of the blue, at the end of 1997, at the age of 40. Some mid-life crisis! I have been a teacher for 34 years, 17 without diabetes, 17 with.

Now I can't claim to be one of those who remembers the bad old days before blood glucose meters, insulin pens and all the paraphernalia of modern diabetes. I feel lucky not to have faced the challenge of diabetes as a child or a teenager. I have to say, however, that the FreeStyleLibre is truly a leap forward in terms of knowledge, and if knowledge is power, then we T1's finally have a bit of power over this infuriating condition!

In just 5 days, this little machine has become one of those "how did I manage without?" gadgets - a bit like our Smartphones, I guess. I certainly check it obsessively, in the same way that most of us obsessively check those smartphones!

So what is the Libre? Well, it's a very clever, technically very advanced, little scanner gadget which scans a sensor worn on the upper arm and gives an instant reading of the blood sugar level, and more importantly, where it has been for the last 8 hours and a prediction of where it is heading. It's this feature that is the real leap forward. Look at this screenshot, taken in mid-evening:-

This tells me that today, my BG fell from a high after a big lunch, rose after a snack around 3:30 and again after my light evening meal then fell during the evening. But more importantly, it tells me (arrow top right) that the level is rising, and so there is no need to act too drastically in response to the low BG.

To a non-diabetic, this might all seem unremarkable, but to those of us who have the dubious pleasure of living with this mercurial condition, the ability to tell not just what our blood glucose level is, but to know where it is heading is truly life-changing. 

And it doesn't stop there. The other revolutionary change is that it can do this without the need for us to inflict pain on our fingers. Sorry to exaggerate, but that is precisely what diabetics have previously had to do, often many times a day, in order to know whether our blood sugar is too high (with attendant long-term health risks) or too low (with attendant risk of imminent collapse) Each and every test hurts a little, and leaves a drop of blood to clear up and a contaminated test-strip to dispose of.

The Libre is a very clever piece of kit. It doesn't actually measure glucose in the blood, but rather the interstitial fluid just under the skin, which it converts to a BG reading using an algorithm. There's a sensor with a tiny needle which you have to fire into the upper arm using a special applicator. It sounds alarming, but is completely painless to apply. It doesn't come cheap - best part of £60 for the reader isn't too bad, but around £40 for a sensor that lasts precisely 14 days, meaning a running cost of £1000 a year. The NHS won't fund it at present, so that means the likes of me are self-funding. There is a very strong argument for NHS funding for the sensors - £1000 pa is pretty cheap compared to the complications it will help us to avoid.

Is it worth it? Well, as Ed Milliband would say, "Hell, yes!" To be able to see trends is truly empowering, and enables a far more nuanced response to highs and lows. Whilst writing this blog, I tested and got a 3.1. Previously, that would have led to a slightly panicky intake of something, probably jelly babies or biscuits, for fear of falling into a potentially dangerous hypo. However, today's 3.1 came with a horizontal arrow, meaning that the level wasn't falling. One biscuit was fine, and 20 minutes later it was 5.1 and rising. By using a minimal correction (1 digestive) I avoided going too high. Brilliant!

Knowledge is indeed power. What the Libre reveals about the incredible sensitivity of the human body to what it takes in is remarkable. Look again at those numbers quoted above: 3.1 to 5.1 in 20 minutes. Already in just 5 days I am starting to see, in far more detail than ever before, the effect of different foods or exercise on blood glucose. That in turn means that I can keep my levels closer to the desirable, healthy, target range of between 4 and 8 mml/l.

Just a little bit of self pity if you'll forgive me: what the libre also shows is how amazingly good a healthy pancreas must be at regulating blood glucose levels. If you haven't got diabetes, you probably never give a second thought to the pancreas, but believe me, it's there inside you, working away at whatever you have just eaten, taking into account what exercise you are doing and regulating your blood sugars in a way that you don't even notice. Those of us whose pancreas has given up have to think like a pancreas without being anything like as clever as one (and please remember, if we're Type 1, this is a random piece of bad luck, unconnected with anything we've done or not done in our lives). And if you are the parent of a child with Type 1, you have to think like their pancreas, which is even harder. Please spare us all a thought!

Please understand me and others if we constantly post pictures of our Libre screen on Twitter. It is genuinely that impressive, and for now, I have to admit it's actually rather fun!