"I want it all....I want it now" - or should patients be patient?

 

I have been a little saddened to see some of the frantic reactions in the instant world of social media to the news that the latest version of the Freestyle Libre monitoring system - Libre 3 - is unlikely be automatically available on NHS prescription to all living with Type One Diabetes in the UK.

It’s perhaps inevitable, given that we have been, quite frankly, spoilt by the rapid advances in diabetes management over the past five years or so, thanks in no small part to the team led by the indefatigable Partha Kar, whose enthusiasm and openness on social media has driven so much positive change.

Those expressing dismay that progress from Libre 2 to Libre 3 is not automatic should perhaps take a moment to think back just six years to the start of 2016 in the world of diabetes. It was a very different world: insulin pump therapy was still widely regarded as something mainly for kids or for those who had "failed" with MDI; looping technology was a somewhat subversive subculture in the hands of a of a few tech-savvy enthusiasts; very few people had even heard of the FreeStyle Libre - the overwhelming majority of us were still drawing blood from our battered and bruised fingers for an occasional snapshot of how our glucose levels were responding to the insulin we had put in a few hours previously; and the online diabetes peer-support community was a still very small group of social media users, not the vast and diverse body that it is today.

Six years on, things are very different: Access to pumps and to looping technology has grown significantly and is being trialled on the NHS with the likely prospect of greatly increased availability in the not-too-distant future, and the FreeStyle Libre (Flash version) is not far from being standard issue to all with Type One and soon for some with Type Two. Alongside this, and to a good extent the reason for all this progress, an online-based community of patients, enthusiastic healthcare professionals and diabetes charities continues to bring together and support those living with diabetes in a way which would have seemed pure fantasy even at the time of my diagnosis at the dawn of the internet age in 1997.

Compared to many living with Type One, I am relatively new to the condition. For those - and there are many - who have lived with Type One for half a century or more, the difference in how their condition is treated and managed is extraordinary - take a look at this article by my friend Peter Davies, for example. Recent years, even recent months and weeks have been interesting and exciting, and despite the continuing challenges of living with the condition, not least during these past two years of a global pandemic, we have much to be grateful for, and many reasons to be optimistic about the future.

Of course the biggest change was a century ago. Tomorrow, January 11^th 2022, marks the centenary of the first use of insulin therapy by the team led by Sir Frederick Banting in Canada - a cause for celebration which has already been much talked and written about, and which is rightly commemorated in the special edition 50p coin which many of us have bought or received as a gift in recent weeks.

As I never tire of saying, in most parts of the prosperous Western world of 2022, we are lucky compared to our forebears of only a few generations ago and indeed the millions living in countries where access to the insulin and monitoring technology on which we rely is not the same as that which we take for granted.

I therefore cannot help but feel that the somewhat grasping reaction to the news of the imminent arrival of Libre 3 to the UK represents something of a loss of perspective and a lack of gratitude for where we already are. For a start, as Partha rightly and politely reminded the online community on Friday, we are still in the period of consultation regarding access to Libre 3. The expectation is that it will NOT be an automatic entitlement to all living with Type One, and it is this revelation which has caused all the furore. However, this should not come as a surprise to those who have really read and thought about the guidelines revealed and warmly welcomed as recently as November, which stated that people with Type One would be entitled to Flash OR CGM according to individual need. Libre 1 and 2 are flash, but Libre 3 is a CGM, and that distinction is important, perhaps inevitably clouded by the use of the same brand name with the number 3 after it.

My reaction is to agree with this distinction. At present, I neither want nor need a real-time CGM: non-invasive monitoring which tells us the direction of travel of glucose levels was the quantum leap, and Libre 2 was another big leap from Libre 1 which for me ended the worry of night-time hypos. That’ll do me for now, and I’d rather leave NHS funding to those who need CGM more than me, such as children, those with no hypo awareness or the very old. And indeed for access to Flash for those living with Type Two, who could benefit every bit as much as we Type Ones have done.

I am lucky that I have good hypo awareness, and in general terms I usually have a pretty good idea of what my BG is, so constant BG information from a CGM is for me an unwanted intrusion, indeed a reminder of a condition in which I am not actually very interested and which I prefer to keep in the background of my life: CGM is TMI for me and there is  definitely such a thing as too much information about blood sugar levels.

So for now, I agree with the distinction between Flash and CGM, and for many, including me, the former is at present more than sufficient. Others may feel differently, and it might inevitably lead to talk of differing interpretations of "complex management needs", and so take us down the road of "postcode lottery" as to who gets it and who doesn't, or that those who are more vocal, pushy, well-informed or privileged may be more likely to qualify.

I speak, of course, as someone who uses MDI (we are still very much the majority) and who is - for now - perfectly happy with it, but if the numbers using a pump and closed loops starts to grow significantly as a result of recent changes and trials, the demand for a CGM may start to increase. But that’s one for the future.

Technology is a wonderful thing, and I am lifelong technophile. But it has its limits, and there are already many examples in everyday life where I am not alone in finding that the constant need for an upgrade sometimes blinds us to the virtues of tried and trusted simpler technology. Cars, satnavs, smart TVs, smartphones, washing machines, tumble driers have all arguably become so smart that many of us choose to ignore many of the features that we have paid for. The “upgrade” culture which is forced upon us has its downsides, and I for one often prefer to wait and see before jumping on board with the latest technology craze.

I want it all...I want it now sang Queen in one of their less memorable songs, an anthem to greed that I never particularly warmed to, and the reaction to the availability of Libre 3 has reminded me of that song and makes it a good title to this post.

Perhaps now is a moment when access to diabetes technology should be driven by need not greed. We have come a long way in a short time, and sometimes patients need to be patient.

Appendix: for reference, here are links to the current consultation documents via NICE:

TYPE 1 Diabetes in Adults: 

https://www.nice.org.uk/guidance/indevelopment/gid-ng10265

TYPE 2 Diabetes in Adults:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10264

TYPE 1 and 2 Diabetes in Children & Young People:

https://www.nice.org.uk/guidance/indevelopment/gid-ng10266

Miss you like Crazy: Come back Libre!

Some say “familiarity breeds contempt” whilst others say “absence makes the heart grow fonder”: most proverbs have a converse version, and we all choose the one that best suits our argument or the moment.

This isn’t, however, a post about relationships.

It’s about diabetes technology, specifically the problem that has compelled me and many others like me to live without our life-changing FreeStyleLibre blood glucose monitors in recent days, because of supply chain problems in NHS prescription supplies to pharmacies here in the UK. I am missing my Libre sensors, and their absence has certainly made my heart grow fonder for them.

What’s the problem? Well, if you live with diabetes and use social media, you’ll know that since Christmas there’s been a significant problem with the supply of sensors, the prescribed and disposable element of a system which has in recent years revolutionised the way in which people with Type 1 Diabetes monitor the all-important levels of sugar in their blood. 

Much has been written about this device, and a campaign in the past two years led by an alliance of patients, doctors and diabetes charities succeeded in making it available to eligible patients on the NHS; many had previously been funding their own sensors at a cost of approximately £100 per month.

In case you don’t know, FreeStyle Libre is a device which enables us to see at a glance the level of glucose in our blood, thanks to a tiny filament which sits under the skin, constantly measuring interstitial fluid, which reflects closely the level of glucose in the blood. The two main advantages are that the device involves no invasive pricking of the fingers to draw blood, and perhaps most significantly, that it enables the user to see a “trend arrow” indicating whether the level of glucose is rising or falling. This is essential and potentially life-saving information.

Like many people living with Type 1 Diabetes, I had quickly become used to this device, having self-funded for 4 years then secured eligibility for prescription in April of last year. I wrote about it more than once on my blog, and played a small part in the campaign to get NHS approval for prescription of sensors, extolling its virtues on TV, radio, in parliament and to local healthcare providers. I was determined to do my bit to ensure that access to this in many ways quite simple piece of technology was available to the widest number of possible beneficiaries, and the progress made over 2019 was remarkable, thanks in particular to the efforts of Partha Kar as a professional and Nick Cahm as a tenacious amateur

So by the end of 2019, all seemed well, and many of us had become used to collecting our little yellow boxes of sensors from the pharmacy, along with our needles, insulin and other diabetes supplies.

Then suddenly, it all went wrong! Soon after Christmas, reports of severe delays and then non-availability came flooding in on social media, and I am fairly typical of the current situation as of Jan 24^th 2020: I ordered new sensors (we are allowed two at a time, one month’s supply) on January 5^th, and I’m still waiting, after 3 weeks.

Now in the grand scheme of things, it’s no hardship, and certainly not worth some of the anger and vitriol that has been apparent on social media. But then again, people feel the need to spill anger and vitriol about lots of things these days.

Of course it’s no big deal, and certainly not a matter of life and death. Before I or anyone else starts feeling too sorry for themselves, we should all take a moment to reflect on the good fortune that we enjoy in living under the care of the NHS, as opposed to in the USA, where even insulin costs are obscenely high, or in some countries where insulin is unavailable for some. A good moment to plug the charity Life For a Child and their "Spare a Rose" campaign - please donate if you can.

However, having said that, going without a luxury makes one very aware of how quickly a luxury becomes a necessity. Have you tried being without a mobile phone for a day or two? Or having to hand wash the dishes when your dishwasher breaks down? Or you clothes when the washing machine packs up?

FreeStyle Libre is much the same: my few days without a working sensor have reminded me that merely knowing the level of my blood sugar is a very inadequate substitute for knowing its direction of travel. And that trying to do a finger prick test at 2am when half asleep is difficult. Or that doing a finger prick test at any time is painful, messy and inconvenient.

But above all, that testing only a handful of times daily is hopelessly inadequate. The NHS criteria state that Libre should be available for anyone "needing" to test more than 8 times daily. 8 now seems totally inadequate, and I have badly missed the ability casually to check at any moment of the day or night. I fail to see how anyone with T1D can feel really confident if their last test was several hours ago.

And yet for 18 years, that was how I lived, and not that many years previously - as Peter Davies has so effectively reminded us - all you had was a urine test strip which told you *roughly* what your BG was several hours ago.

So my time without Libre has served to renew my conviction that where Type 1 Diabetes is concerned, the ability easily to know what’s going on with one’s blood sugar, and to learn from and react effectively and flexibly to that information, is the key to living well. I hope that once the current supply issues are ironed out, we will soon see Libre (or other similar low-cost monitoring systems) available to many more who would benefit. And surely that means the overwhelming majority of people with Type 1, and for that matter Type 2.

Meanwhile, dear Libre, I Miss you like Crazy.

"Living by Numbers" - my Diabetes Story

It's not been a good week to be diabetic. We woke up on Monday morning to news headlines revealing a 60% surge in diagnosis of diabetes over the past 10 years. The mid-market tabloids featured front pages screaming about the "epidemic" which would "bankrupt the NHS", quoting our poor diet, sedentary lifestyle and bulging waistlines as the cause of this menace. 

Daily Express, Monday 17th August 2015

You had to look very hard to find any reference to the two types of diabetes. TV and radio did rather better, making clear from the outset that this story was largely about Type Two, but even so there was a sense that diabetes was being demonised.

Small wonder then that people with diabetes were soon up in arms on social media. In particular, the familiar call to re-name Type One was getting another airing, and many Type Ones took to social media to post pictures illustrating how active and healthy they are using the hashtag #RealLifeDiabetes, as well as reminding others how hard it is to live with this complex condition. It really is very frustrating when you have Type One, a condition which strikes randomly and has no connection with the victim's previous diet and lifestyle, to feel tarred with the brush of Type Two, which is always portrayed as a disease of a greedy and over-indulgent modern society.

I am not inclined to get too involved in the Type One/Type Two debate: it is not fair to accuse anyone of causing their own illness. If we set off down that route, we might as well start "blaming" people for having cancer, given known links between at least some cancers and diet and lifestyle. Nobody gets ill on purpose. I would prefer the two conditions to have different names, but it isn't going to happen.

However, perhaps this is a good moment to share my diabetes story on my blog , just as a reminder that  - like all other Type One diabetics - I am the victim of the fickle finger of fate, and not the author of my own misfortune and a drain on the NHS.

I was diagnosed at the end 1997, at the age of precisely 40. Until then, I had lived a life with minimal contact with the health service. I had a couple of standard childhood illnesses, leading to a couple of spells off school before the age of 10; I then managed an entire secondary school career without a single day's absence. I fell off my bike at the age of 13 and suffered a straightforward arm fracture, which mended in the standard six-week time frame. And that was about it. Prior to my diagnosis with diabetes in 1997, I had worked for 17 years as a teacher with a total of about four days off sick (two lots of two).

Moreover, I was a slim, healthy and active person: as a child I cycled to school, played football as a recreation and spent holidays fell-walking with my family. As an adult I cycled to work, tended an extensive garden and walked from my home to the local shops rather than driving. And I still do.

Then, at the age of 40, I had a very bad case of 'flu in the week running up to the the Christmas break at school - a week's absence for the first time ever. No real cause for alarm: there was a big epidemic and a number of colleagues were off at the same time. Then, on the day after I had started to feel better again, my condition took a nosedive, and I went to my GP, alarmed at this apparent recurrence of an illness from which I had just recovered. I felt tired, thirsty and run-down, but just thought it was a hangover from my first real illness in years. A routine urine test revealed very high blood sugar, and an alarmed GP (parent of three children whom I taught) informed me that she was pretty sure that it was diabetes, referring me to her colleague at the practice who was the specialist in diabetes. He told me to "cut out all sugary foods" and see if the sugar level fell. This puzzled me somewhat, as I have always had a famously "unsweet tooth"- there was little or nothing to cut down on. However, I agreed to do so, and came back a few days later to discover that my sugar level was higher than ever. "OK, said the doctor, we'll put you on medication" He was assuming, from my age, that I was Type Two. Looking back, I have to say this was a questionable diagnosis in the face of all evidence - I was slim, ate healthily and exercised plenty - but again, I went along with it and took the pills for a few days (including Christmas Day). 

It was only when I reported back with an even higher blood sugar level and no sign of feeling better that he finally wondered if it might be late-onset Type One. Off to hospital I went (only as an out-patient), where a consultant agreed it certainly must be Type One, and referred me to the clinic to learn the noble arts of injection and blood testing. I did all this without missing any days off work, despite feeling very tired. My school were very good to me, and as I live near to the school, I was able to come home for a rest at lunchtime and leave early when not teaching.

Two different insulins, two pens 
- my permanent companions.

Once the insulin started to have an effect (and that effect comes on almost instantly, as anyone with Type One will tell you), I was soon back to normal. By the Easter four months after diagnosis, I led my annual residential school trip to France with about forty pupils and five colleagues. I continued to do this every year whilst it remained part of my role at the school. By the June six months after diagnosis I was planning, setting up, organising and running the end-of-exams Ball for 200 Sixth Formers, a demanding job I undertake every year. In day-to-day terms over the 17 years since, I have continued to take on all that life and work throw at me, all with an unblemished attendance record in a very stressful job. I am certainly not a burden to anyone, and other than the cost of my insulin and test strips, the annual flu jab and my annual clinic review, I don't bother the NHS at all.

But let's not pretend it's easy Living by Numbers (to quote my chosen title). Living with Type One diabetes is a 24/7 challenge that we face on top of all as that we do in life, whatever that may be. You can never forget or overlook it for more than a few minutes. Every action, every piece of food or drink, every event needs to be thought through. Any departure from routine is potentially risky. Most infuriatingly, insulin - the treatment that you self administer every day in order to preserve your life - is precisely what threatens to bring you down in day-to-day terms. I think is fair to say we have a love-hate relationship with it!

My Diabetes drawer - all the stuff we need to keep going

An yet it could be worse. Let us not forget that. It was a lot worse until the discovery of insulin therapy by Canadian Frederick Banting in 1922, when Type One was in effect a death sentence. It is a whole lot worse in many less fortunate countries  where access to insulin is still limited or non-existent. The 400 000 of us who live with the condition in the UK have good cause to be grateful to our doctors, nurses, designers and makers of insulin delivery methods and blood testing kits who enable us to live normal, active lives. 

People with diabetes are also remarkably supportive to each other: in one of the best illustrations there is of the good side of social media, thousands of diabetic people of all ages, both genders and all backgrounds regularly support, help and encourage each other online in a spirit of togetherness and cheerful acceptance of a condition which can at times make its victims feel frustrated and lonely. It's no fun having Type One, although it is fun being part of a worldwide community of people who are very good at making the best of a cruel stroke of luck.  Ironically, I think that Type Ones are so good at looking after and understanding our bodies that we actually end up being disproportionately healthy in old age. So please, don't accuse us of being responsible for this illness, or of "bankrupting the NHS".

"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.....

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