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.

 

 

 

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.

Birmingham Blues

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

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

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

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

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

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

Lis, Pippa and Tim - diabetes bloggers all

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

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

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

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

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

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

Neil Harris of Abbott talking about developments with the FreeStyleLibre

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

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

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

I would say two things:

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

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

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

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

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

Post-Script:

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

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

 

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

Standing on the Inside: my day in the Land of Libs

I have often over these past 3 years reflected on the interesting turn that my life has taken thanks to diabetes. Never more so than last Friday, when I found myself Standing on the Inside of the factory where the FreeStyle Libre is made. Yes, I was in the #LandOfLibs and Neil Sedaka's jaunty tune from 1973 came into my head.

Until around 2014, my adult life had unfolded along a line which was really rather predictable. I had enjoyed school as a pupil; my mother was a teacher; and I was good at languages. I had an inspirational and personable French teacher for a couple of years leading up to O-Level, and he seemed to me to thoroughly enjoy what he did for a living and imparted that sense of fun to others. So I never really considered doing anything other than being a teacher. I went to university to read languages then trained to be a teacher.

Moreover, given that I am not very adventurous, it was always likely that I would end up living not far from where I was born and brought up, and so it was hardly surprising that I took a job teaching languages in a Lancashire school in 1981, made a reasonable success of it, and worked an entire career there. I married quite young, with my wife also pursuing a career in teaching, and along the way we raised a family of three children, all now adults.

So far, so predictable. We’ve had our share of life’s ups and downs, as any family does, but far more of the former than the latter. For me, the biggest down was developing Type One diabetes in 1997, exactly halfway through that teaching career, but to be honest it had little impact on my life and work, being just a nuisance rather than a burden.

It is therefore remarkable that I now devote so much of my time, thoughts and energy to diabetes and my fellow diabetics, and I have spent much time reflecting on this, not least this past Friday, when I found myself as a VIP guest at the Abbott Diabetes Care factory in Witney, Oxfordshire, sharing a public conversation with a Sky TV presenter about my life with diabetes in front of an audience of people who work at that factory. Yes, I really was in the #LandOfLibs. How did this happen? 

Well, it started with a tweet – like a few interesting opportunities in my life of late. It was June 2015 and I received this message from a then unknown follower on Twitter:-

That message, from an Abbott tweep led to my being the subject of a filmed mini-feature about my life and work and how the FreeStyle Libre had helped me to flourish. If you haven’t seen it, it’s here:

Adrian Long's Story

Both before and since the making of that film, I have continued to extol the virtues of the Libre, entirely out of conviction and with no inducement or encouragement from its makers. I say it because I believe it, and I know that many others feel likewise, and many, many more would love to do so if they could afford it. I said it all in this blog post (link below) within a few days of getting it and have never changed that view:-

What's going on?

As well as that film, Abbott have already involved me and other fellow diabetics in a number of other activities, most memorably and enjoyably at two bloggers’ conferences in different European capitals. Having twice boarded aircraft at the crack of dawn, bound for cool European cities in the company of friends who were until recently complete strangers, I have already had cause to be very grateful to Abbott for  giving me some new opportunities as I approach retirement from my working life. My sincere enthusiasm for an innovative piece of medical kit has certainly taken me to some interesting places and made me some wonderful new friends.

So imagine my delight when I was asked a few weeks ago if I would like to give a presentation to the workforce at the factory where FreeStyle Libre was invented, developed and is produced. I leapt at the chance, unsure of what was required of me, and discovered that I was to share duties with Stephen Dixon, presenter of Sunrise, the breakfast news on Sky TV. Stephen is a high-profile Type One whom I had already met when we were both speaking at the TADtalk conference in April, and we were asked to conduct an on-stage conversation about life with Type One and the benefits of the FreeStyle Libre in allowing us to live our busy lives.

So I found myself in the Land of Libs on a glorious summer’s day, and a surprisingly powerful experience it proved to be. I remain rather humbled, even baffled, but extremely grateful for the recognition and respect that I am afforded by Abbott, and I felt rather unworthy as I was welcomed as a VIP visitor and taken on a factory tour. 

#LibsOnTour at the #LandOfLibs

Abbott's Witney factory is most impressive: a modern, squeaky-clean place where test and ketone strips for ordinary meters and sensors for the FreeStyle Libre are made. Sadly, but understandably, the Libre sensors are produced in strict secrecy, due to the potential value of such a unique and innovative product to rival companies. Frosted glass screens the production lines, with workers in the sterile rooms dressed like forensic scientists at a crime scene. The regulatory demands of producing a medical device which penetrates the skin are reassuringly strict.

I got a better look at the process which produces blood and ketone test strips in their millions, and it gives a powerful reminder of the awesome technology from which we benefit. 

Equally striking is the positive corporate culture which pervades every aspect of the factory's life and work. The sense of teamwork and inclusiveness is palpable, and the highly skilled workforce clearly enjoy their work and take great pride in it. The corridors feature displays which celebrate the company's mission and ethos in a manner reminiscent of a good school, indeed the uniformed workforce clearly have the same sense of belonging as that found in any good school.

My staged conversation with Stephen Dixon, at which we “compared notes” on our lives with diabetes, was listened to with a respectful attentiveness which confirmed that employees really appreciated the chance to hear at first hand how their work impacts upon the lives of those whom Abbott's products help. I genuinely felt that I was part of something big and thoroughly worthwhile.

I hope that this does not come across as obsequious or creepy. There are those, including some in the world of diabetes, who are cynical and suspicious of the role of the healthcare industry in caring for peoples' health. Some suggest that profit is their driving motive, but I beg to differ. Businesses, all businesses, produce goods and services from which we all benefit. They make profits if they do it well, and invest those profits to improve and extend what they do, as well as rewarding those who help make them successful. Capitalism, like any system, has its faults and can be abused (the current scandal of insulin price in the USA springs to mind) but by and large it works to the benefit of society at large as well as any other system we have tried.

Abbott Diabetes Care appears to me to do a very good job in developing and producing ways of improving our lives with this demanding condition. The FreeStyle Libre is a technologically advanced game-changer for those lucky enough to be able to afford it. There is good reason to believe that it will in time be available on prescription and I know that there are people working tirelessly to achieve that goal. Abbott are all about technology and scientific expertise, but more than that they are about people. I have had the pleasure of meeting many people from several countries who work for the company in a variety of roles. They all speak warmly of Abbott and the people who work for it, and I am proud to count a number of them as friends. Abbott and its people mean a lot to me. 

New friends from Abbott

My day in the Land of Libs confirmed what I already thought, and I am grateful for the opportunity to be Standing on the Inside and getting to know more about where the FreeStyle Libre comes from. 

Don't Dream It's Over

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Don't Dream it's over. Sadly, it is. I'm starting this account of a wonderful weekend in Amsterdam on the day after I returned, and as always after any fun weekend, I am moping around on a Monday morning wishing it was Friday again. I had a fabulous weekend of friendship, inspiration and education at #DXAmsterdam, the third European diabetes bloggers' conference on June 16 - 18 2017.

  

The contents of my suitcase and backpack lie strewn all over the bedroom floor, and whilst the clothes are quickly sorted and put to the wash, every leaflet, wrapper and receipt that falls out of my backpack tells a story, a story of a weekend which once again matched, nay exceeded, the feverish excitement that it generated among those of us lucky enough to be there. 

The theme of the conference was dreams: following them, chasing them, living them, and to be honest, the whole weekend seems like a dream now. A nice dream that you don't want to wake up from. Don’t Dream it’s over is the song title I’ve chosen for this post: an enigmatic masterpiece by the wonderful Crowded House which is over 30 years old – how did that happen? But more importantly, did #DXAmsterdam really happen? I certainly wouldn’t have believed even five years ago, let alone 20 years ago when I was diagnosed with Type One diabetes, that this medical condition would lead me, shortly before my sixtieth birthday, to spend a weekend with a group of young friends from all over Europe who share my condition, having fun, bonding and learning. It was like a dream. 

But it did happen – and my phone holds the proof: It started with a tweet, or rather a veritable TwitterStorm: 

I had known that a third DX was likely to happen, and as a previous participant who had continued to blog and tweet, I felt that I was in with a chance of being invited. But as April came and went, and the anniversary of the two previous weekends approached, I thought maybe not this time. Fair enough. I'd had my turn with #DXStockholm in 2016. Then in mid-May, an email from Abbott landed in a number of inboxes, including mine, explaining that in view of the increased number of Libre-using countries, we were invited to apply for the seven places for UK bloggers, and that a draw would take place if too many applied.
  

Amidst much speculation over who and how many had received the invitation, I spoke with my good friends Lydia and Ellie, whom I knew had been invited, and we three agreed to reply immediately  and enthusiastically and hope for the best. The reply we received indicated that a draw would probably have to take place, and said we would hear back after that date. It was a Monday, 15 May. 

Monday came and went. No email. We'd agreed to share news if any one of the three of us heard, so we knew that either none of us had got lucky, or they hadn't drawn it yet.

  

We spent Tuesday in intermittent Twitter DM contact hoping to be put out of our misery soon. Then in the late afternoon, I was driving home with my phone in my back pocket, where it sits to make sure I’m not tempted to use it while driving. Suddenly I felt not just one, but a whole series of vibrations, that familiar sign that something is going on with your Twitter feed. I got home, took out my phone, to be greeted with this excited exchange on the DM group of me, Ellie and Lydia:- 

I nervously opened my emails, and there it was, the same email, just received. So the DM conversation continued:- 

I think it's apparent that we were just a tad excited....and I'm old enough to know better.

Five weeks later, I was at Leeds-Bradford Airport at 5am to meet up with my two friends and travelling companions. Airports at 5am are strange places where you quickly lose all sense of time. You're plunged into a fully up-and-running workaday world at an hour when you're normally still in bed. We made our way through security and were soon boarding the strikingly small Embraer aircraft which plies the Cityhopper route to Amsterdam.

It’s at that moment that the surreal and dream-like nature of the experience takes hold. Your other life fades into the background, and boarding a plane takes on the feeling of entering some kind of surreal parallel existence. What series of events and decisions in our otherwise unrelated lives had brought us three to those aircraft steps? And all over Europe, others were doing the same.

Three travellers with nothing in common except duff beta cells

A smooth 55 minute flight later (although Ellie will take some convincing that any flight is smooth or easy, and was very glad to have the company of her diabuddies on the plane) and we landed at Schiphol, a bewilderingly large hub compared to the provincial airport we'd flown from. From there, a fast train to Amsterdam Central and we were soon stepping out into the city of bikes, bridges and boats. 

The fabulous Hoxton Hotel

We made our way to the wonderful Hoxton Hotel, away from the tourist throng and checked in, relieving ourselves of our suitcases, then set out to make the most of our bonus morning in Amsterdam. It's one of those places that just delivers: canals, humpback bridges, narrow houses with pointy roofs, bikes ridden by people of all ages, shapes and sizes and the unmistakable aroma of wacky baccy. We strolled the streets, taking in the assault on the senses that is Amsterdam. But like Bill Clinton, we didn't inhale. 

Ellie and I showed our true colours as crazy cat people, leading to this memorable scene: These two pictures were taken at the same time. Look at Lydia's horrified face in the right hand picture if you want a picture of embarrassment personified. "I am not with these two, honestly!" The cat, being a cat, was totally unmoved.

Feeling fully in tune with the spirit of Amsterdam having seen some - ahem - interesting sights, we returned to our hotel and its quirkily luxurious rooms, before making our way down to the lobby to meet up with our diabetic friends old and new.

Before we'd had a chance to say more than a quick hello, we were bundled into a fleet of taxis in small groups to be taken to the starting point for a bike tour of the city. It felt like being in a gangster movie, as a rather large and very grumpy taxi driver sped across the city to the bike hire place. He clearly thought that nobody else had a right to be on the streets, honking his horn, gesturing furiously and making grunting noises (that may have been Dutch words) every time the taxi's speed dropped below breakneck. On reaching a traffic queue, he simply used the pavement as an extra lane, and at one point used several hundred metres of (fortunately empty) tram track to get ahead of a long line of queueing traffic before pushing in front of the first car in the queue.

With my whole life having flashed before me, he suddenly screeched to a halt, grunted, pointed at a shop front and flung open the doors. Ellie, Lydia, and a Spanish lady we’d never met tumbled out onto the pavement and fell to our knees in prayer for having been spared (ok, that last bit is a lie). 

We'd survived a plane journey and a taxi ride with a maniac. So in a third and final attempt to kill us, we were now taken on a long tour of the city on a fleet of bicycles. The shop owner half-heartedly offered us helmets, whilst making it clear that to accept the offer amounted to a personal affront,  and we set off on a tour which was, in fact, great. 

Preparing to cruise the mean streets of Amsterdam with Simon

Guided by an enthusiastic and knowledgeable leader named Simon, we zoomed along cycle paths, side streets, parks and even busy main streets, apparently having right of way every time except when we didn't. At one point an angry middle-aged Dutchwoman swept past on her bike with a volley of abuse about the dangers posed by tourists on bikes, and a few cars, vans and trams tried to wipe us out, but by and large we were fine. 

We reached the end of the afternoon intact, were presented with a card celebrating our survival and enjoyed a leisurely walk back to the hotel. Was the taxi ride and bike tour just a dream?


Showered, changed and rested, we gathered for the welcome and a talk by Matthjis, a Dutch blogger who runs a support group for young adults with diabetes in his country. His calm, measured manner was challenged by an angry Greek woman determined to hijack the agenda but the majority prevailed and he was able to deliver his address. We were then served a buffet meal which was rather light and somewhat lacking in carbohydrates, so four of us sneaked away for a McDonalds. Not before we'd captured the obligatory bridge selfie: Suitably fed and watered, we all retired to bed. 

Saturday was spent in conference at the Cristofori Concert Hall, in a room full of inspirational messages lit by a spider made of angle-poise lamps:

Angle poise spider

We were inspired by the utterly awesome para-athlete Claire Lomas, baffled by a team of life coaches who gave us all a pair of plastic ducklings, puzzled by a strangely distant Type 1 astronaut, charmed by a professional photographer who shared tips on capturing Amsterdam on film on an idyllic canalside stroll and intrigued by the latest data on #FreeStyle Libre from Abbott's team of boffins. A varied, enjoyable day's programme with plenty of time for interaction with our fellow bloggers.

A photography lesson

Another stroll in the sun, a couple of hours' chill-out in our rooms, then a well scrubbed-up party made for the lively Van Puffelen restaurant for a delicious meal and much conversation. I spent the time trying to assure new friends from across Europe that the UK had not suffered a complete collective loss of sense in successive elections and a referendum. I failed to convince myself, let alone them. 

We strolled back through the streets, relaxed and inviting on an increasingly balmy summer evening, pausing for the ultimate #DiabetesWithoutFrontiers selfie: 

An Englishman, two Russians and a Turk

I then enjoyed a sustained and enlightening conversation with Saidat, a native of Dagastan in Southern Russia, born under Soviet rule and now living in Frankfurt and working for Abbott. Another moment that had me thinking: is this a dream, and if not, how did I come to be here? I was sitting on the terrace of a canalside bar in Amsterdam at midnight, hearing first-hand stories of glasnost and perestroika from one who had experienced it. And all because I chose to start talking about diabetes online about four years ago. 

Sunday started with a much-anticipated Brit-breakfast, with the seven UK bloggers in secretive conclave with Neil Harris and Ollie Mitchell from Abbott UK for an update on the long and protracted process of achieving NHS listed status for FreeStyle Libre sensors, thereby removing the £100 monthly charge. Their candid and thorough insight proved most useful and reassuring, and the full English breakfast was impeccable in every detail. 

The British delegates

We were then bussed to a hotel and conference centre out in the Southern suburbs, where we were to take a guest slot in sessions of a “Quantified Self” conference: a strange but in many ways simple concept which could translate as “living by numbers”. After a very West-Coast icebreaker session led by a guy who looked like Gareth Southgate and spoke like Timothy Leary, we adjourned to workshop sessions on sleep, exercise and food and their effects on metabolism. At our session on sleep, it quickly became apparent to those leading the session that people with Type One who like us are engaged in their condition are experts in the mysterious workings of their bodies, and the conference experts were pleasingly keen to learn from us.

Quantitative Self boffins

And that was it. Time for warm embraces and sad farewells as we all realised that it was time to wake up from our dream and return to the real world. Even Maria the Greek had mellowed by now and embraced me warmly.

Me and Maria

We took a coach back to Schiphol, and the rest of the day then ran like a protracted So Long, Farewell from the Sound of Music, as one by one, people took their leave to board a different flight. In the end, there was just me, Ellie, Lydia and Dave Sowerby boarding the flight to Bradford.

So Long, Farewell at Schiphol

Another quick and uneventful flight (although Schiphol is so vast that it seemed as if we had taxied half the way home before the plane took off) and we were back on home soil. Farewells to Dave, then to Ellie and Lydia as their taxi arrived, left me, alone like little Gretl at the end of So Long, Farewell, facing a long lonely drive home. The sun was going to bed, and so must I. 

Don't Dream it's Over: but it is. A fabulous weekend in the ultimate diabubble, leaving all of us wanting more. DX2018? I Can dream, Can't I?

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