Wednesday 6 January 2021

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:

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 BrownPhilippa 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.




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