Posted by on Thursday, 22 March 2018

T1DCC at the Diabetes UK Professional Conference 2018

Last week I was able to sneak in to the halcyon halls of the Diabetes UK Professional Conference for the day.

I have been appointed as one of three PWD/people with diabetes/diabetic/lay/patient* representatives on the ABCD T1DCC. Oh yes. A PWD on the ABCD T1DCC - that's me! Diabetes is all about the abbreviations, and why bother with inclusive language when you can just spout forth with endless baffling acronyms and confuse people - that's what I say!

*whichever irritates you the least

The ABCD is the Association of British Clinical Diabetologists, and their T1DCC is the Type 1 Clinical Collaborative, which was being officially launched at a presentation on Wednesday afternoon. You can find out more about the collaborative here but essentially it is an initiative that seeks to support and improve care in type 1 diabetes, sharing best practice, guidance and support for healthcare professionals working in the UK. The T1DCC seeks to support improvement across 6 areas:
  • Pumps and technologies
  • Health care professional education, training and workforce issues
  • Patient education
  • Whole of life
  • Enabling success
  • Quality improvement
and along with two other pancreatically challenged types I am looking forward to chipping-in to the discussions and conversations as they arise.

The T1DCC presentation was divided into short sections. Chair Rob Gregory introduced the Collaborative itself. Emma Wilmot shared new downloadable Diabetes Technology Network 'best practice' guides for insulin pump therapy in adult clinics and also for inpatient settings. Anne Kilvert shared about quality improvement and the T1 Services Audit. Helen Hopkinson spoke about DAFNEplus which builds on the success of the UKs foremost educational programme for people with T1. Sophie Harris gave a presentation outlining the power of peer support networks for PWD, and how t1resources.uk can offer clinicians and PWD a set of searchable, trusted resources. Partha Kar spoke about the possibility of an emerging digital platform for T1D. The session ended with a panel discussion.

If your name's not on the list, you're not coming in
As is customary with the Diabetes UK Professional Conference there was a good deal of difficulty with being allowed in as a mere person with diabetes (which is always put down to some obscure rule about pharma being explicitly forbidden to advertise directly to members of the public, which tickled me as I saw this pharmaceutical advert on the way to the conference). However the PWD reps were allowed to attend as we were listed as 'speakers' at the presentation, so I was able to arrive a little early and managed to get to see some excellent sessions.

Widening access
To their credit, Diabetes UK did try something radically different this year in terms of widening access to some of the conference content to non-professionals. An extra 'Insider' day of the conference was added on the Saturday, which was only open to people affected by diabetes and condensed some of the main conference sessions from the previous 3 days. Everyone's second favourite Nightscout-Guru-Diabetes-Dad, Kev Winchcombe has written a rather good post about the Insider day. DUK also invited a couple of familiar PWD peeps to tweet from the main conference itself, so more of the content was shared, which I for one was very glad about. The lovely Ros from Type 1 Adventures writes about her take on the main conference and Insider event here.

Other stuff from the day
As with previous times when I have managed to attend the DUK Professional Conference, the day was an absolute whirlwind of fascinating sessions, with hastily grabbed coffees and chances to bump into familiar faces.

Psychological support
It was heartening to see the profile of psychological support being raised this year. The first session I caught was entitled 'Weaving psychological principles into routine care' with Debbie Cooke, Christel Hendrieckx, Jen Nash, Lisa Newson and Cathy Lloyd speaking about the pivotal importance of psychological support for people with long term conditions. There are downloadable resources from the Australian Centre for Behavioural Research in Diabetes (both for HCPs and people with diabetes) which are well worth checking out.

The discussion also extended to the language used in clinical interactions and looked to the #languagematters work underway nationally in the UK. 


Beyond A1c
A fascinating session about HbA1c, glucose variability, continuous data and 'time in range' which matched much of my lived experience. The suggestion from US clinician Ann Peters was that while HbA1c is still a useful research measure, it is increasingly being eclipsed by the usefulness and richness of continuous data. The same HbA1c can hide a multitude of different experiences of diabetes, and even significant challenges such as Severe Hypoglycaemia cannot effectively be predicted by A1c alone -  severe hypos can happen across a range of A1c's and have more to do with glucose variability than whether your HbA1c is above or below 7%.

Emma Wilmot's part of this session focussed on improving access to technology. She began with a slightly shocking statistic that the average UK HbA1c for someone with T1D is as high as the 'control' arm of the celebrated DCCT trial (1983-1993), which is still relied upon to show the benefits of intensive glucose therapy. For all the years that have past, fancy insulins that have been released, and technology that has begun to be adopted, on average people with type 1 diabetes in the UK are still only achieving those 'non-intensive' outcomes, with all the increased likelihood of diabetes complications as a result.

It was also heartening to hear in this session that our concept of what is meant by 'normal' blood glucose may be changing. When you are pretending to be your own pancreas it is easy to assume that 'nonnys' always exclusively live between 4.0 and 7.0mmol/L no matter what they do and what they eat. But as more people without diabetes are wearing continuous glucose monitors for a variety of different reasons it is becoming clear that even when you have a fully functioning pancreas there can still be quite significant glucose variation.

Inspired
Once again I left the Diabetes Professional Conference exhausted and genuinely inspired by the passion of healthcare professionals, researchers and academics.

It was wonderful to see an emphasis on person-first care, tailored to each individual. A desire to see the right technology used in the right way for the right people. To treat the whole person, body and mind to support them towards better self-care and better outcomes. It is clear that there is much left to be done, but the desire to make better progress is tangible.

Managing diabetes is a tricky old business, but these people really do care and really are seeking to improve outcomes for all of us pancreatically challenged types.

Disclaimer. Diabetes UK supplied me with a free one-day pass to the conference as a speaker. The T1DCC kindly paid for my train ticket which was very nice of them. I was not asked to, or paid to write this post. Your diabetes may vary. Blood sugar can go down as well as up.

Posted by on Saturday, 10 February 2018

Thanks a bunch - Spare a Rose 2018

I'm sorry to break it to you folks, but things don't look very good for 'us lot' in the event of a zombie apocalypse. But in the world as we know it, where a life-saving medication has existed for nearly a century, it is horrendous to think that people, particularly children, might die for lack of insulin. But they do. For all our 21st Century self-congratulation about the ever-shrinking world and our technological marvellousness, access to healthcare remains far from universal - even in the allegedly 'developed' world. In poorer countries insulin may be all but impossible to acquire, or afford. And without insulin, we die.

It has been great to see quite a bit more attention given to the annual 'Spare a Rose' campaign from folks in the UK this year.

There is something so elegantly simple and profound about the 'Spare a Rose' concept. It takes a gesture of affection, a token of love, a symbol of intent - one which is so inherently transient and passing - how long to those roses last? A few days perhaps? And turns it into something genuinely powerful. Something almost heroic - saving the life of a sick child. The cost of a single rose equating to a month's worth of insulin.

Spare a Rose addresses so significant a need for people living with type 1 in some of the world's poorer countries. I think it's something everyone living with type 1 diabetes in the UK has considered, even if only in passing, at least once since their fateful diagnosis day. What if I lived somewhere else? What if insulin was very hard to get hold of? Or impossible to afford? There but for the grace of God...

I first came across the idea of Spare a Rose a few years back, and the campaign itself dates from 2013. A few of the great and the good of the #doc have enthusiastically supported the idea, particularly in the US where the idea began. The surge of attention in the UK this year is largely down to everyone's second-favourite irregular-blog-posting chucklefest Chris 'Grumpy Pumper' Aldred. Historically the UK's contribution to this particular charity pot has been rather on the small side, but I suspect, with your help dear reader, that things could be rather different this year.

'Spare a Rose' resonates, I think, because it focuses on a celebration of love. It takes the familiar commercial overindulgence and perhaps asks us to think about what it really means to express love, or care, or affection for others. Both those close to us, and also those we have never met. The idea is that you give one fewer rose to the special someone in your life, and donate that small saving to provide insulin and education for a child with type 1, living in some of the world's less resourced countries. Spare a rose, save a life. And it says something wonderful about people with diabetes coming together and connecting for the common good. Lots of people, giving not very much, all around the world, adding up to literally thousands of saved lives.

Something significantly more than the sum of its parts.

If you would like to save a child's life today, visit lifeforachildusa.org/sparearose and do something amazing.


If this subject has caught your attention and you'd like to know more about projects seeking to ensure global access to essential treatment for people living with type 1 diabetes I'd also suggest you look into #insulin4all which is an initiative of T1international.

Posted by on Saturday, 30 December 2017

CGM, diabetes time travel, and lessons learned from go-karting

Image by 'aurorasognatrice' used under cc.
2017 is hurtling to a close, and despite my giddy optimism about having 'loads of time' over the festive break to do all sorts of things that I don't generally get around to, the days have passed in a blur of hopelessly guestimated carbs, fun, friends, family and alcoholic excess. Consequently I am once again hastily cobbling together a round-up of the year type post - you lucky lot.

Almost exactly 12 months ago I was placing my order for a transmitter and first box of sensors for my MM640G insulin pump. I'd trialled the system over the summer of 2015, and I have always opted for Medtronic pumps with the vague notion of possibly, some day, self-funding CGM - but this was the first time our family finances had permitted it. I'd been using Freestyle Libre sensors intermittently for a few years (which you can use sporadically without the additional £500 for a transmitter), so I was interested to see how occasional SmartGuard coverage worked out for me.

In the end 2017 turns out to have been by far my most sensor-filled year. I was invited to trial Medtronic's Guardian Connect in April, and was unexpectedly and very generously gifted some short-dated sensors by someone who was switching systems and could no longer use them.

I always try to get the maximum use out of every self-funded sensor I insert, and I am fortunate to be able to restart almost all of them for at least another 6 days while retaining good performance. This almost halves the cost - or more accurately for me, doubles the sensor coverage. I had hoped to spread 10 'stretched' sensors (approx £500-worth) across the year to give me somewhat less than 50% coverage, but in the end, have been able to use them continually for quite a number of months which has been a very interesting contrast to my usual pancreas impersonation guesswork. It's interesting to reflect on the changes I've noticed myself making to day-to-day management decisions, and how it has felt as an experience. Here are a few basics:
  • On the whole it has felt far easier to live with diabetes this year.
  • I've not done any complex analysis of BG results, but my basic monthly spreadsheet analysis (nerd alert) shows significantly better results.
  • My A1c has fallen by 7mmol/mol (0.5%) and my hypoglycaemia has dropped significantly
  • Sustained reduction in hypoglycaemia has really improved the reliability and timing of my warning signs.
  • For the most part I seem to be operating with around 80-85% of results in range (4-9mmol/L) - even over Christmas. This is ridiculous.
  • On average I've only been getting 1-2% of results below 3.9mmol/L, nocturnal hypoglycaemia has been almost completely eradicated and I am having days and sometimes weeks at a time with all but no readings below 4.0.
  • These are not results I can achieve without continuous data, not matter how hard I try.
  • Even with the benefit of Freestyle Libre these are results I find it impossible to achieve. The alarms of full CGM provide me with significant added benefit, especially for catching lows.
  • Occasionally life with CGM has been rage-inducingly frustrating, and alarms have sometimes driven me to distraction.
  • I've had a few duff sensors and made some very poor choices based on inaccurate sensor data.
  • Additionally, SmartGuard is a bit of a liability with an inaccurate or under-performing sensor, sometimes sending me into double figures with a cancelled basal (and sometimes half of a slowly-delivered bolus!) when I would have been fine if left well alone.
  • SmartGuard is amazing for me, but very often I can't resist overruling it, ending it early and/or adding some carbs. Sometime this works better, sometimes I suspect I create more problems for myself than is strictly necessary 
  • Additional data is a significant help to me day-to-day. I've come to rely on it and feel quite lost without it, but there are times when some of the subtle details of life with CGM have created their own challenges - which leads me to...
CGM and diabetes time travel
I've always been one for a thinly stretched analogy. I can't help myself. There are two coming up... You have been warned.

With absolutely no apologies for the shameless 'Christmas Dr Who' reference, I've also been thinking quite a lot this year about the diabetes time travel that you get involved in when tinkering with continuous data. I've considered this before in terms of the repeated half hours you can spend with diabetes waiting for various management decisions you have made to start working - periods of waiting which can seem interminable. With more time spent in CGM-land this year I've noticed additional time travelling shenanigans with the lag between 'sensor glucose' read via interstitial fluid and actual 'what's happening now' blood glucose information.

This was brought more keenly into focus with my brief dalliance with the faster-acting Fiasp. An insulin surrounded by feverish hype of very rapid action - which sadly for me rather failed to live up to expectations. But the promise of faster acting doses has occasionally made me feel the sluggishness of Novo-not-very-Rapid all the more keenly.

Mostly I find 'sensor lag' is barely noticeable, but with a whiff of irony, it is when my BG is on the low side and I'd really appreciate accurate information that this 'time travel' is most clearly noticed. Looking at a Libre or Enlite trace at those times, shows you what was happening something like 10 or 15 minutes ago. And any 'rapid' carbs you take to bring up those low levels, or turn-around a dip towards hypoglycaemia won't change your blood glucose for 10 or 15 minutes, and may not show on the eagerly-watched line for a further 10 or 15 minutes after that. More than enough time to double-treat, only to watch your levels climb into double figures a little while later.

In just the same way, when you have a trace to watch, there is a powerful urge to see a high-and-rising BG trace turn around. But correction doses for me are unlikely to show any noticeable effect before 60 minutes have passed (unless I add increased activity into the mix) - plus the mandatory 10-15 minutes, of course. And at each of these moments the graphed time-travel of results, and interminably upward direction of travel gives few clues as to when it is 'just about' to level, or begin to dive downwards. Threepio proudly suggests 'insulin on board' from which you might think I could make an educated guess (and sometimes I do luckily seem to drag some precious clues) but all too often I can find my IOB dwindling away to nothing, coping only with mis-guessed carbs, rather than the elevated BG I had hoped to squash. Other times I can bear it no longer and wade in with an additional dose, only to see my BG trace drop off a cliff and plunge downwards - awash with both insulin and various types of carbs. Which reminds me...

CGM and lessons learned from go-karting
I have only been go-karting three times I think. By which I mean the crash-helmeted-boiler-suited-whiff-of-2-stroke-engines style go-karting rather than the sliding-down-a-hill-in-a-fruit-box-with-pram-wheels-bolted-on style. I don't think it's an exaggeration to say that I'm absolutely terrible at it. I was reminded of my go-karting prowess when thinking about some of my... erm... more questionable diabetes decisions in response to a more frequent CGM data-feed. I suspect I am not the only one who has fallen foul of the double-dose and/or double-treat temptations - and for all the benefits of all that extra information, it is unmistakeably one of the risks.

The very first time I sat in a go kart, in a dimly lit, oily, industrial shed on the outskirts of our city, my driving style was essentially binary. The accelerator was either fully down or entirely untouched. The steering wheel locked at either edge or dead centre. Brakes were applied with sledgehammer-like gracelessness. As a result I kangarooed around the indoor circuit, making full use of the amply-supplied tyre walls and doughnuting my beleagured kart in furious circles. I proceeded at lightning speed from one collision to another and made very little effective progress around the twists and turns of the circuit.

This is pretty much the way I drive my diabetes when things are not going well. Frustrated by apparent lack of action of more reasonable measures I heftily over-correct with hugely inflated insulin doses or swigs of Lucozade. Lurching and stumbling from high to hypo and back again. Crash! Clonk! Screech! Everything becomes overblown and chaotic.

The second time I went karting was every bit as 'successful' as the first, but I had something of a lightbulb moment on the third occasion - which was at an outdoor circuit. For whatever reason, this time I adopted a more subtle approach. The accelerator was rapidly pressed full down at the start, then backed off in time for the first corner... rather than stamping the brakes I found myself making little feathered dabs. Steering was altogether more considered. Confidence grew. Speeds into tricky corners increased, a late firm braking followed by a hard turn of the wheel and full throttle at the mid-point of the turn allowed me to power-slide out of the corner. I was still making strong adjustments in some circumstances, but more often my choices were much more subtle, more measured.

This is what I see when my diabetes management is more successful. It is when I am able to make smaller adjustments that I do better. Multiple big overlapping doses and rapid-carb 'rescues' can leave me in a flat spin and going nowhere. Smaller tweaks, spaced further apart are often significantly more successful. I have found this to be a really interesting and important thing to think about when Threepio is merrily warbling away. Those alerts can seem equally frantic, but I need to pause and consider my position on the 'circuit' of my day. Can I just coast through this corner without stamping on the brakes (adding insulin) knowing that the turn of the wheel or dab on accelerator I've already made is enough, or is this the devious hairpin and do I need full-lock and firm braking before powering-on with additional carbs to make the turn.

In general terms, when I notice that I am oversteering and stamping on the brakes and accelerator of my diabetes managment, I am trying to remind myself to make a couple of slower laps and build up to speed again more gradually with more gentle adjustments.

Widening the access to continuous data?
I was delighted to be invited by Abbott to attend DxAmsterdam in July, and then in September the eagerly awaited news was released that Libre was to be placed on the NHS tariff and could theoretically be made available on prescription, subject to local CCG decision-making (and perhaos an emerging postcode lottery). Abbott's real-world data, shared in Amsterdam, backs up my own experience of access to continuous data - that the more information I have on which to base my guesswork, the better things tend to go for me.

Diabetes still has the capacity to be hugely annoying of course, but for me - more data certainly leads to better results. Continuous data is not without its challenges, and it will be vital for people living with diabetes to be given appropriate support and help in order to make best use of the information and avoid the pitfalls. Both in terms of their support from their clinic and also perhaps, those who have made the mistakes before them and can share their experiences. It will be really interesting to see what effect wider access to these technologies delivers as access to Freestyle Libre and CGM increases in the years to come.

It remains to be seen quite how much life my transmitter has left in it. They are warrantied for just 12 months. I will continue to use Enlite sensors for as long as I can, especially since my CCG seem rather reluctant to take any decisions on the finding of any kind of sensors for anyone - however great the need. I would imagine I would be very far down any list they eventually decided to draw up. After that I'm not sure if I will revert to Freestyle Libre, spring for another Guardian transmitter or take a continuous-data break.

Wishing you all a tip-top 2018. And thanks as always for reading.

Posted by on Saturday, 2 December 2017

Keya Smart Meter review - Ketone and BG results in a single strip

Every once in a while, some device manufacturer or other drops us a line to see if we'd like to take a look at their fancy new gadget and see what we think. When it comes to blood glucose (BG) meters, it is very rare that something genuinely new comes to the table, often it's just a cosmetic way of getting the fingerpricker, strips and reader in one amorphous gloop of plastic - a fascination which escapes me. A couple of years ago, at a diabetes conference I had somehow managed to get into (not at all easy if you lack a medical qualification) I was struck by a display in the exhibition hall advertising a new BG meter, that seemed to break this mould, and be offering something new and really rather interesting. The ability to get blood glucose AND blood ketone results from a single strip. A strip that would be priced more or less in line with the general BG meter market.
 
For those mercifully unaware of the significance of that, blood ketones are generally regarded to be a Very Bad Thing if you live with type one diabetes. If left to build up in the blood due to insufficient insulin and raised BG they can quickly turn a normal day into one filled with paramedics, wailing sirens and everyone's second favourite urgent diabetes complication - Diabetic Ketoacidosis (DKA) - which, joking aside, is potentially lethal.

Ketones not keytones
Keytones are the annoying bleeps your phone makes as you type, unless you have the good sense to switch them off. Ketones take annoying to a whole new level and might easily send you scampering to A&E.

Ketone monitoring is generally advised for people with type 1 during periods of illness, or if BG levels become elevated (say above 13mmol/L / 230mg/dl) and remain there for any length of time. For some people on insulin pumps, ketones can be particularly problematic, because a blocked cannula or bad infusion site can leave little, if any active insulin after a matter of hours. I am lucky in that I do not seem to create ketones as readily as some, but I know that for many, especially parents of children with T1, ketones are a real source of anxiety and worry.

There are two ways to check for ketones, one is through urine strips, the other blood ketone monitors. Urine ketones offer a significantly delayed picture because it takes ages for them to filter through, and blood ketone strips until now have been fiercely expensive (approx £2.50 each strip) which means that those who secure them on prescription usually only have a limited supply, that they must use carefully when they need them most. But here was the promise of a meter that would give an instant blood ketone check, effectively free of charge, alongside every single BG result. This was a genuinely exciting prospect and I asked the Keya Smart folks to keep me informed.

It took a while for them to send me a meter to look at, but here is my n=1 experience of the Keya Smart. I can't say how it would work for anyone else, but this is what happened when I tried it out for a month.

Left to right: AccuCheck Expert, Contour NextLink and Keya
Pouch, pricker, strips and basics
One of the first things I noticed was that the case for the Keya Smart was a bit on the large side. The meter itself has a good sized touch-screen which is bright, responsive and easy to read. There is a USB cable/adapter for charging and data transfer, though data transfer can also apparently be done via Bluetooth - a feature which I did not investgate. The fingerpricker is perfectly serviceable and fairly pain-free with adjustable depth, but is not going to snatch my affections away from my trusty Multiclix. The strips, unusually in my experience, come in a flat container which nestles neatly in the pouch. This made strips extremely easy to remove when the container was full as they lined up like soldiers, but as the tub emptied the strips were able to slosh about a bit more and became a little fiddlier to remove. One nice design feature of the pouch was that the meter say inside four little 'corners' which neatly held it, but also allowed you to easily remove and replace it whenever you needed and also access the touch-screen completely unhindered. None of that faffing about with elasticated transparent bands.

Set-up, battery life and data display
You are walked through a basic set-up when you first switch the meter on (time, date, language and so on). You can then set glucose targets and activate other functions as you need them from the 'set-up' screen - for example whether you would always like to see blood ketone results, or only be alerted if they are elevated.

The battery seemed to last well - I would guess I'd get a good couple of weeks' use before I needed to recharge. The large screen must take some juice, and rather strangely there did not seem to be a way to turn it off when finished, you had to rely of the screen timing out and switching itself off after a few seconds. Pressing-and-holding the 'On' button didn't seem to do anything. This might be a bit annoying if you were running low on battery when out and about and needed to squeeze a few BG checks out of it until you could recharge.

The meter stores results for both BG and ketone results which can be viewed in a logbook table, or averaged over 7, 14, 30 and 90 days. I particularly liked the 'trends' screen which allows you to view results for either BG or ketones in a pie-chart style over 7, 14, 30 or 90 days.

You can flag results as being before or after meals, fasting, during sickness, for exercise or with insulin. These flags can then be applied to your 'trends' view to filter your results and see how your numbers stack up for those different times of day/activities. Importantly for me, you can add or edit those flags whenever you want to, there is no time limit. You can go back and add a meal tag several days later if you forget on the day. It frustrates me beyond belief when diabetes gadgets set arbitrary time periods for these kinds logging options. They are my data - I want to be able to access and update when it suits me.

Ketone values are highlighted either each time you check BG or only if elevated (amber) or high (red). Ketone values of up to 0.6mmol/L are considered fine, between 0.6 and 1.5mmol/L rates as 'Elevated' and any ketone reading above 1.5mmol/L is flagged as 'High'.

Build quality?
It all seems pretty slick and solid to handle (with the possible exception of the finger pricker which feels a little flimsy), but I did have an unfortunate time with my first Keya Smart meter which stopped turning on after about 4 days. Neither the strip port, nor the on button, nor recharging would bring it back to life, and there was no way to extract any data from it that I could find. It was fine one evening and just would not turn on the next morning. It was an ex-meter.

Possibly the most annoying error screen, ever.
Slurpiness
One aspect I always enjoyed reading in Tim and Alison's meter reviews on the venerable and much-missed Shootup related to strip slurpiness. How keen, or otherwise, a BG strip is to avail itself of a proffered droplet of blood. Sample size for the Keya Smart meter is a piffling 0.5μL, but unfortunately the strips themselves are rather bashful in welcoming your freshly squeezed fingers. It takes my Contour NextLink less than a third of a second to slurp up it's required sample, and the strips hungrily home in on blood from half a room away. By contrast the Keya Smart meter took a full 2 seconds, and seemed to need you to place your finger in a very precise alignment before it would deign to begin its dainty sipping. Not only that, but there was no opportunity to 'have another go' if a sample was fractionally short, as there is with some meters. Not quite enough blood on a strip and you had to abandon the check, and start again. Even more annoyingly, given it was completely outside of your control - the meter would reject some tests because the strip was filling too slowly - to which I would frequently shout, "I KNOOOOOW!!".

What was very unfortunate was the frequency of these strip errors. I don't know if I was just unlucky, or if it is something to do with the engineering of the strips to allow the dual results, but I was having significantly more checks rejected by the Keya Smart than by any other meter I have owned. Particularly irritating when you had a slow fill error, followed immediately by a underfilled strip error, before you finally managed to get a result.


Elevated BG, but ketones 'all clear'.
Results
Again I must stress that these are just my n=1 observations, but while I was using the Keya Smart I decided to check against my current NextLink USB meter. I often do this when evaluating a new piece of BG technology, because it helps me to know whether the new one generally reads higher or lower than I'm used to which can help inform my BG management decisions. The NextLink USB was said to be one of the most accurate on the market in a recent review, and I have always found it to be very reliable when double-checking a value, rarely differing by more than a few decimal points if I am not sure of a BG check and want to make sure it's not a rogue result. The official results in the Keya Smart handbook look similarly impressive with 94% of results within 0.8 mmol/L of a lab reference.

Sadly this was nothing like my experience.

Alongside BG comparisons, I also acquired a handful of Optium Blood Ketone test strips for my Freestyle Libre to cross-check any occasions where the Keya Smart meter registered elevated ketones.


Disappearing ketones
On multiple occasions I would recheck a value from the Keya Smart, only to be given a completely different number from the previous strip. Both blood ketone and BG values were subject to significant variation between two strips, checked moments apart. If either (or both) of those rechecks involved strip rejection(s) you can imagine the florid and colourful language which freely flowed.

Here you can see an initial check which alerted for high ketones despite in-range BG, by contrast the Libre shows only a trace of ketones. A recheck with another strip and while the BG value is very similar, the ketones have now dropped from 'A&E here we come' to 'Nothing to worry about here, sonny'. 

It did seem odd for me to get a high ketone alert at 4.0mmol/L BG, so this was easy to spot - but if it had been the earlier photo where I'd run in double figures all night I might easily have taken the first value as accurate. I have to say that in all the elevated/high ketone results I cross-checked, all the subsequent Keya strips and the Libre blood ketone checks only registered a trace.

And so, within a few days of using the Keya Smart, I had seen enough rogue values of either BG or ketones which had come out very differently a second time around that I knew that any value that was even slightly unexpected needed to be rechecked.


Keya Smart reads almost double.
But it's not always quite as easy as that in the day to day business of pretending to be your own pancreas. Sometimes you almost expect to get a high value. And sometimes the difference between Keya Smart and other glucose sensing technologies I was using at the time were actually quite alarming. If I had corrected for 12, when I was actually 6.8, then my correction dose, based on the data I'd received from the Keya Smart (had I not rechecked), would have aimed to send my blood glucose to 0.8mmol/L.  

That is more than a little worrying.

Keya Smart vs Contour NextLink - BG readings

NextLinkKeya SmartAvg +/- %

(against NextLink)
Avg +/- mmol/L

(against NextLink)
Average6.9mmol/L7.8mmol/L19.6%1.2
SD2.32.417.2%1.0
Distribution of readings
Number of readings where Keya Smart higher3682%
Number of readings where Keya Smart lower818%
Number of readings equal00%
Number of readings within 0.5mmol/L1739%

The table shows the results from 43 pairs of readings. Not a huge dataset, but the differences are quite marked. The Keya Smart almost always reads higher, sometimes significantly so. And only 4 times out of 10 does it read within what I think of as being the benchmark for 'pretty much the same' - less than +/- 0.5 mmol/L.


Conclusion
I really wanted to like this meter. There's a lot about how it has been put together that I really like, and the promise of 'ketone checks every time' I see as having real value for many people. Sadly though, the variability in the results I got means that it really isn't the meter for me. I will keep it and use up the strips I have for blood ketones as and when I need them, but I'll make sure I check three times on each occasion so that I can be sure of the result I'm getting.


I wish Keya Smart every success for the future and hope they can iron out these wrinkles for their next version. At the moment though, this feels like it's a product that's not quite ready for the real world.


Final verdict: 1/5


Disclaimer. I was offered a Keya Smart meter and sent it free of charge. I was not asked to write about the Keya Smart meter and I've not been paid to write this post or publicise the product in any way.

Posted by on Wednesday, 13 September 2017

Libre available on NHS - big news and bigger caveats

Last night the rumour mill reached fever pitch as Non Disclosure Agreements were stretched to their very limits. And this morning the Twitterweb was a-buzz with the news that Abbott's Freestyle Libre flash glucose monitor is to become available on the NHS from 1st November*. JDRF issued this nifty press release and everyone's second-favourite cat-loving pyjama-wearing T1 ex-schoolteacher and all-round good egg, Adrian Long, was even glimpsed on Sky News in the early morning undertaking some top Libre punditry and sharing his love of 'Libs'.

* subject to local healthcare economic approval, CCG friendliness, moon in jupiter, blah blah blah.

Of course, no sooner had the long-awaited announcement been made than people began to get a bit sniffy about it, or unbelievably optimistic - depending on their frame of mind. Either Libres were about to be handed out to everyone immediately, whether they wanted them or not; or it was going to be a postcode lottery / the end of CGM funding / a complete disaster.

The official announcement from Abbott covers the whole of the UK, including Scotland, Wales and Northern Ireland. Freestyle Libre will be on the 'drug tariff'. Which means that it will be able to be prescribed, and reimbursed by the NHS.

BUT (and depending on your point of view this might be a small niggle, or a deal breaker), this is subject to local health economy approval.

It's an important step, but it might not be the end
I think I probably come down more on the side of 'wildly optimistic' about the announcement. But the 'local health economy' / local clinical commissioning group (CCG) approval thing is a bit of a worry. Even the JDRF announcement is rather cautious, stressing how important it is that the technology actually does end up reaching people. There may still be some work to do in your area to encourage the bean counters to play fair.

Balance of costs
The cost to the NHS of one Libre sensor is going to be £35. For people using intensive insulin therapy who might be using 8 or more finger stick test strips a day, the costs more or less balance out. Assuming an average-ish strip cost to the NHS of £14.50/pot it costs the NHS about £2.32 a day for 8 strips, versus £2.50/day for Libre sensors lasting 14 days where you can be checking 15, 20, 30 times a day or more. I am reminded of the real-world data that Abbott shared recently. In general, across all their users, the more people used Libre, the better their results. Fewer hypos, fewer highs, more time in range and a lower predicted HbA1c.

Even if you are not prepared to take on the heaving behemoth that is your local CCG and try to turn them around to the idea, I can certainly imagine myself having an interesting conversation with my GP (who, of course, runs their own business) about exchanging my strips for sensors for all the added benefits that gives me. It may be that as part of that negotiation I suggest paying for my own strips for DVLA and other occasional requirements. The cost analysis undertaken by NICE for T1 demonstrates that 8-10 strips a day can be cost effective (more BG information is associated with better BG outcomes and reduced complication risk). There may be niggling details and rules about 'local formulary', but it's certainly a conversation I'd be interested in having with my GP if the local CCG drag their heels (as they have been known to do in my area).

Getting your GP and/or hospital clinic on-side and banging the table for you is a good plan too. Speak to them and get them to apply pressure to the CCG to ensure readers and sensors are listed in the local formulary (which is located at Hogwarts just down the corridor from potions and defense against the dark arts).

But what about 'proper' CGM?
Some people have worried that all these funds getting diverted to Libre will spell the end of CGM funding. Personally I don't see that happening. CGM is currently only weakly recommended in national guidance for people who have significant problems with recurrent hypoglycaemia and have lost all or almost all of their hypo warning signs. The submissions to the NHS for approval were very clear that while Libre can really help some people reduce their exposure to hypoglycaemia with extra information, they are not a substitute for CGM alarms/sensor augmented pump for those with no awareness.

Diabetes UK have put together a position statement on Flash Glucose monitoring which I was pleased to be involved in, and which I think clarifies many of the issues about the Freestyle Libre. What it is good for and who can benefit from it. Thankfully it involves people with Type 1 and Type 2 diabetes - and actually I think should be applied to anyone with any of the many types of diabetes who are intensively using insulin. The recommendations on page 4 are very interesting.

Of course some people have been able to carefully negotiate the fiery hoops to secure full or partial NHS funding for CGM in their own particular case. I'm not sure I see the availability of Libre as affecting the clinical reasons which led to their funding being granted - unless they wanted to swap of course! Freestyle Libre is not a CGM, and does not issue alarms. If those alerts are important to you, then CGM is the better option. But for others the lack of 'alarm fatigue' is a positive benefit of Libre.

Onward and upward
I am really encouraged by this announcement. It's been a long time coming and a lot of work has been done behind the scenes to get to this point. Huge thanks to Lesley and Melissa at INPUT, the team at JDRF and Diabetes UK, and not forgetting Dr Partha Kar in getting us this far.

I am absolutely convinced that Freestyle Libre has a huge potential to help thousands of people who are quietly struggling with their diabetes management. Not in extreme enough need with frequent A&E visits to attract CGM funding, but just keeping going not knowing what they don't know about their BG fluctuations. I really hope the technology can be made available so that those quiet strugglers can go from doing OK to doing really well. Can reduce their long-term complication risk and improve their quality of life.