Rise of the Machines

So it’s the RotM (Rise of the Machines) day coming up this weekend and I’ve been looking forward to it. In typical fashion, there has been a little snag though!  

 The roads up here have been closed. To get to the event on time means a 68-mile diversion to get to the train station (and the same to get home). So that means a very silly hour start to get there with a lift. If I went by bike I could avoid most of the diversion, but that still leaves 22-miles. Thus meaning starting at about 4am, maybe sooner to be safe due to darkness/weather. Taking Lancet (the bike) would be a good thing as she is my APS system and quite frankly the sexist APS builds out there (in a Marty McFly voice “You built a APS out of a bicycle?!” Yep, I did as it has the additional sensors such as power output, heart rate, calorie burn, environment etc.)! So, it would solve both things but would require a silly hour ride in -3C/-4C temperatures through a Met Office weather warning just to get to the train station in pitch black darkness. Yes, I have lights, good lights but night riding isn’t going to be fun in those kinds of conditions. So after a fair bit of considering, sod that for a plan, I ain’t going! 

 This could have been got around by going down a day earlier and coming back on Sunday. Snag on that would mean this would soon become a £250-300 trip and I would be losing a day off work as well. So yes, a possible but a bit of a hmm is it really worth it?! 

 Anyhow, I had a few questions and points of discussion for the event though, which I’m going to throw out there so anyone can pick up and try and answer for me. Yes, in my inevitable style some sound like I’m treading on toes again but not intending to do so, would just like to know the answers to these is all and throw the ideas out there since I can’t make it… 

 

Real-world v Certified Usage 

 This is an interesting one as it’s one questioning how the NHS thinks things through. I can remember the first time I got to play with a CGM back in 2010, the *shudder* Medtronic harpoon. Evil thing that it was! It was certified for 6 days but my DSN said straight off, if it fails on day 5 give Medtronic a call and get a new one and if it gets to the end of the 6 days, restart it and see how long you can get out of it. I liked it for it being ohh looksee what my BG is doing, but soon saw the issues it had with dehydration and other problems. It was an interesting starting point though. But even in those early days a good DSN knew it’s limitations and how to flex them past their manufacturers certified boundaries also. 

 It has been shown recently that part of the issue with getting the NHS to provide CGM is money. Yes I know it was only September when we were told money wasn’t an issue as the Diabetes budget is so vast it doesn’t matter and being able to spend on the Libre wasn’t a concern. Well now it is and thus the reason why we can’t fund CGM. What was it I said at that time? Something about how the Libre would actually hinder our care by stopping us getting devices which can provide a far greater benefit (CGM as needed for use with APS systems) by stopping the budget for CGM? Anyhow, that is the past even if my Nostradamus thoughts have all come to pass or are skipping along quickly towards them. 

Part of the issue with certified usage is a Libre sensor is certified for 14 days. A Dexcom sensor is certified for 7 days. Therefore, in certified usage the Libre is a more economical device. Snag is being that the Libre isn’t restartable, at all while the Dexcom G4/G5 sensors are, multiple times. It’s not certified for this but every diabetic using one, every online forum and most health care professionals all know it. How many times? This comes from how it is used but depending on how clean the site was before the sensor was added and if some good fixing tape is used when it is applied most users get anything from 3-5 weeks with some getting up to 8 weeks from a single sensor! I know myself I average 4-5 weeks (only had once last a poor 3 weeks) on a sensor and when it comes to comparing pricing of the systems that actually alters matters greatly! 

  • The Libre using certified usage costs £1060 for the first year.
    Outside of certified usage it still costs £1060 for the year (costs include original starter kit, £990 per year in following year).  
  • The Dexcom G4/G5 for certified usage is £2900 for the first year.
    Although if you go outside of certification and restart sensors and change transmitter batteries yourself, that cost reduces to £820 for that year (price includes original starter kit £620 for the following year without this). Even if you don’t change transmitter batteries yourself and purchase new ones this equates to £925 per year. 
  • Medtronic Enlight certified usage is £3440 for the first year (excluding cost of a pump which is also necessary as it needs a Medtronic pump to display readings).
    Outside of certification this does drop to £2200 (no starter kits etc to not need calculating for further years). 

Outside of certified usage, in real world conditions a
Dexcom 
G5 is considerably cheaper than a Libre! 

The Dexcom sensor technology is considerably the cheaper option to run. Yes, I know manufacturers and the NHS can’t use anything not certified for their calculations and as such need to ignore how users actually use them. But the reality is, the Dexcom G4/G5 is the cheapest solution available, and the soon to launch G6 is expected to work out even cheaper due to sensors lasting even longer (without costs of sensors at this time pricing can’t be done).   

 

Software 

There is a lot of discussion these days about AndroidAPS, and OpenAPS which is where it all comes from. There has also been talk of a possibility of the NHS certifying it in some way. While yes, a wonderful idea it worries me in certain regards. I keep hearing the argument that the release version of the software should be the one certified by the NHS. This is an opensource piece of software, releases can come every few days or weeks. Certification takes testing, extensively, and could never keep up with that. That alone would require some considerable resources by the NHS. Simply put, never going to happen!  

The “we do testing in the dev release, the release one is perfect” argument is total utter crap! Yes, I totally understand, you spend weeks, months, years working on your code and feel it’s utterly perfect. You and your friends have spent weeks testing it and it works perfectly as you send it to become the release version. It then fails, often! It happens to all big software companies; how many times has Apple screwed up a patch? or Microsoft? Or even huge opensource projects like WooCommerce? Only a few weeks ago it’s latest release version crashed and burned (a lot!) of websites which needed rolling back until it got fixed. This was after a lot of testing also. I know myself, I’ve just earlier this month released a major project for work which I’ve spent the last 18 months on. We’ve been testing it in house and with third parties for the last few months, it was great…I spent the first few nights up to silly hours sorting all kinds of issues which came up once the general public got their hands on it. 

We all take great pride in our work, we all think it is wonderful, but we all make mistakes and when that work we are doing is put into the hands of people whose lives depend on it, we need to get it right! My proposal recently for this was a simply one, basically something akin to a LTS (Long Term Support) build for AndroidAPS and OpenAPS. This is used on mission critical software often, you have the development version, the release version, and the LTS. The LTS is older but has been tested to hell and back and everyone knows it works and works well. In regards to NHS certifying software, this is the one which should be the one it certifies. Yes, compared to the current release build it is dated, lacking features, but everyone, the NHS and those who choose to use it know it works and work well. Over time a trusted release build would get certified again annually or six-monthly and become the new Certified Build (not calling it LTS as support wise it doesn’t fit this example).  

 

Libre 

First off, I hate the Libre. Always have and no matter what people say about it probably always will. You are probably asking why shortly followed by the usual spiel about it being innovative, but I have to ask where is it innovative? I love innovation and the Libre has none. The whole it’s “innovative” thing really winds me up. So, firstly I’m going to explain why I dislike it so much. 

It’s a none real-time CGM. And before people start whining that it’s not a CGM, it is. End of, it has the same sensor technology as all the rest, the only difference is it doesn’t transmit that information real-time. That’s THE ONLY difference. You can call it Flash, or anything else, I’ll call it NFC (Near-Field Communication) because that’s what it. Some call this an innovation, but is it? Simple answer to that is no. It is actually a work around to bypass other problems with the design, mostly that on the power usage of the device. If it used a proper wireless system like Bluetooth it would need a larger battery as the chipset available at the time (no longer though) would result in more power being necessary and a larger device and also a higher price tag. This would produce a far better device as it would make the Libre a real-time CGM like those from Dexcom and Medtronic, but due to the power requirements necessary a design decision was made not to have Bluetooth in the current version (as said above about why). For those of you following the development of the Libre II, it has Bluetooth and as such the NFC chip and aerial have been removed from the design. The lack of Bluetooth (or ZigBee or any other wireless system) has resulted in the Libre being unable to do alarms. This is not some “innovative” idea to make it less intrusive or anything else, this was a decision forced onto it due to power requirements and as such in the Libre II alarms are a major “innovative” feature being added.  

Another major issue I have with it has been how it’s been released. Basically unfinished. The initial Libre when they came out have test points still on the mainboards, not something normally found unless it was a test device (which it was). Since release, the mainboard has been swapped, the aerial design has also changed, the sensor has been modified, and they’ve tried three different glues (at last count) on the pads. The supply of the device has also been massively limited which raises some large questions. The device is pretty much a beta device released early and being modified as it goes. Production limitations are aiding that for being done in smaller runs so modifications can be made to it as production can be scaled up later once the final design (the Libre II is worked out). As well as the limitations, there has been a lot of people experiencing failing sensors and failing glues even after the numour changes so far. All round, the Libre smells as pre-release testing which took off rather too well so the company went with it as best they could when in reality it was intended as an early in the wild test bed for the true CGM the Libre II. 

Why was it chosen first? Was it because it was “innovative”? Surely not as it’s dated technology lacking true innovations. So why? Was it because of their blinding marketing campaign paying off bloggers with trips to lovely places which got them wittering word for word marketing spiel and making the masses believe it? In doing so resulting in the masses sending endless streams of I want letters to decision makers? Highly likely. 

The Libre II is going to be a very interesting device. Still stuck to a set time use for a sensor which could prove interesting when it’s compared to the Dexcom G6. Both of these will have integration into various APS systems coming out “soon” so it’ll be very interesting how they work out cost wise. But as mentioned above, on cost when you go outside of the certifications the Dexcom will probably have it so it’ll all depend on that as to how the bean counters measure things. Whats said on paper or what occurs in reality. 

Doing Things, The Wrong Way – The Bad diabetic!

I’ve been rather torn on this one for a long while. Do I write something about it, don’t I. I don’t know. Part of me just wants to bury everything and the other just wants to get a few things out there and to say to hell with it all and just throw some of my how to be an utterly terrible diabetic wittering’s out there. This has sat as a draft for a long time in one form or another, but what the hell now…

A lot of this goes back to the days before blood testers, back then we peed on strips, and before that into test tubes with fizzy tablets which made you pee change colour and you used something like a Dulux chart to tell your BG within the accuracy of about 4mmol. Not like you changed doses or anything as it was all rigid diets and rigid doses. Anyhow, in the mid-1980’s my parents got me a “lovely” BG meter. It came in a very fetching maroon leather case with brass buckles on it…the ideal thing for a kid to take to school and never receive grief for! Not like I did, as I simply refused to use it due to the hideous thing which came with it, a lancet device which pretty much fired a map pin into your finger after retracting it in a half circle before it fired it at you. The thing could bruise a finger for a good week at a time and as such was something I avoided. Utterly!

Before I left primary school, the GP I had who originally diagnosed me retired and his replacement was this evil strict nasty lady (mental picture at the time). For many years she utterly terrified me and I would literally run and hide in shop doorways to avoid her. Why? Because right from the off she changed everything. My parents, or more precisely my mam wasn’t allowed to get involved with my diabetic care. It was all mine to deal with, and I would have to deal with it myself. Inject, dose, everything. Yes, this seems harsh and was very much so at the time. In hindsight, it was a really good thing for me, toughened me up no end and this amazing doctor actually became a very influential person in my life (yes, a big jump from evil strict nasty!). Having all this power though as they say should really come with responsibility. Sadly though, in my hands maybe not so much…

By the 90’s and my teens, I had this sorted! It was so easy, I had those BG record books, a couple of different colour pens and on the way to the hospital for a check-up could just fill in the boxes with lots of random numbers that matched what my HbA1c is roughly so it all looked good. The different ink was handy to make it look a bit more mixed too. Throw in some nodding, keeping teenage quiet, and generally looking like you didn’t want to be there and all good. They would ask questions every so often and fiddle with doses but it mostly seemed like they just wanted to fiddle and could be ignored. No one asked too many questions and you could be soon out of the place.

During my teens was also a moment which came to scare me, even to today. I had gone to the clinic for my check-up and these were the days when the consultants themselves did blood tests instead of letting professionals do it (the nurses). The doctor I had always used to like me to stand in the middle of the room and look at the corner of the ceiling while he did whatever. Had done this many times before and never thought anything of it. Mid-way through this huge black crack seems to shatter its way across the ceiling tiles. I murmur to the doctor a “urmm doc..” as the crack stops as it reaches the far wall. Very odd. A second or so later it cracks down the far wall. “DOC!!”, I look down to see what he was fumbling at and squirt right over his paperwork on his desk, the crack on the far wall starts to run down…ohhhh THUD and I hit the floor out cold. Ever since that day I’ve always had issues with blood tests, well publicly anyhow. Truthfully though I’ve had major issues with needles ever since, all needles, which as a T1 could be rather problematic.

Come my late teens and twenties I still avoided testing. Gone this far without it so why should I change now? Injecting had become a huge problem now though. It was kind of a combination of when I had to do an injection of sitting in a toilet for 30-40 minutes quaking in fear over injecting and the other being that I had started to discover that nothing much happened if I did skip the odd injection. I was still here the following day, what’s the problem! And it meant I didn’t have to face another needle. I hadn’t given up completely, but I was finding I could easily skip one per day. A little win every day, right?

Come 2000 the clinic I was going to had a wonderful idea to save money of discharging all its patients. Yay, I’m cured! It was a strange day going to the clinic and instead of seeing the nurses for a blood test as normal just seeing a consultant with a clipboard handing out a bit of pink paper saying go to reception and you are now solely under the care of your GP. My GP, of course, wasn’t happy about this at all. She complained many times to no avail and even showed me some of the letters and responses she received. One was a lovely one saying I didn’t warrant a clinic as I was non-cooperative. Me?! Never! See, my HbA1c and fake BG results all say I am good! This rattled on for a while and sadly came to an end when my GP retired.

There are other issues of course, well one main one. Women! I was single, utterly alone or so it felt and hadn’t a clue how to speak to members of the opposite sex. Ok yes, I still don’t which is probably also why I’m still single. Although now I don’t really care about it as much. Frankly, I was desperate and would do some utterly stupid things just to talk to someone I liked. This have course also had effects on my diabetes care. One of the daft things which I had started doing was trying to chat up various waitresses, bar staff and the ladies in sandwich shops and the like. It would be the usual thing of making sure I would go in practically every day just to order something even if it meant multiple trips each day for “a drink”. That might not have been so bad if someone actually took a bolus for what he was eating, but not a chance in that! I was on the pull or so it seemed in my head. I ate, I skipped injections, I overdid injections if I felt a bit off, just winged things totally. But as you might guess my control HA! If you could call it that was pretty much a mess.

Things as you might have guessed finally start catching up with me. It took long enough, didn’t it?! Going stiff as a board during sleeping and managing to pull the muscles in my back so I can’t walk for three days. Hypo’s all over the place, and yes I know, odd considering I was skipping insulin, but then taking random doses when I felt “off”. Being glazed half the time. Getting picked up by paramedics over and over again. Drink, women, food, no insulin, loads of insulin, loathing work and having a boss piling grief and hassle all day long for the wonders of what would these days be far below minimum wage, then returning to a dark room of a night to descend into stupidly long online gaming sessions to escape the mess that was the world. Epic memory loss hypo’s, being found face planted in shop windows, missing involving police searches, laying out cold on train platform benches, destroying toilet blocks, racing wheelie office chairs down main streets, dancing with grannies around the Post Office, destroying Easter egg displays in supermarkets. Things caught up with me!

I don’t think I was, at least at the beginning anyhow not taking my injections as a way to lose weight. It did come in from time to time later on though mostly due to looking at the pictures from my brother’s wedding. I was round, a fat lil bastard and no wonder I was alone. This picture also pushed something else in me…I needed to change.

Secretly running up a nearby hill in the evening to hide being seen. It hurt like hell! That soon got binned. Me being the nerd that I am needed another solution. I scoured eBay for parts and got lots of components to make a mountain bike. Some of them even fitted kind of together! Many others didn’t! It was a hard lesson in the standards of bicycle parts but eventually with help from my local bike shop a bike was formed and I used it daily for getting to and from work. I could do 2 miles! 5 miles! 10 miles! 20 miles! I was super fit now, I had lost 3 stone in only 6 months thanks to this wonderful machine…the continued skipping of insulin, of course, didn’t have any contribution to this did it?!

Things kind of came to a head when one of the paramedics who kept scraping me up flipped. She asked everyone else out of the room and tore into me with a threat that if she ever saw me again she would section me. I was doing nothing wrong though! It just happened that things kept going wrong is all! My GP now tried over and over to get me back to the clinic. I assume the paramedic’s report had really got his attention to get something sorted. But the response from the clinic was that I didn’t warrant seeing a DSN or Consultant as “his diabetes wasn’t severe enough” … My Hba1c was still magically in an acceptable range somehow. In the end, he transferred me out of the county to another clinic.

Something changed within me. I have no idea what it was. Was it pushing myself harder on the bike, I had just bought a new drop bar bike which was soooo much faster than my old mountain bike. It was pushing me harder, faster, and further and I had set myself a goal to take part in a new local sportive thing over 46 miles. I started testing! I had a goal. I still refused to use a lancet device and made do with using my pen needles as they were sharp and thin. But they drew blood and I was testing for the first time in nearly thirty years. It might have been the fact I was soon going to see a new clinic and I knew I needed help somewhere deep down. I have no idea, I was doing things kind of properly again. Still skipping injections, but adjusting to some degree for it now.

The new clinic ripped up my old static dosing I was on, yes, I was still doing that! Adjusted everything closely, tested, monitored and were actually very nice to talk to about things. I could talk bikes, what it did to me. I hid many of my other issues behind the bike and it hid them very well. But it was strange that ever since that day I haven’t had a hypo I haven’t treated myself. How did I manage to live this long with seemingly no complications? Even today a further ten years later, I haven’t the foggiest! Luck?! Do I still have my desires to skip doses? Well yes but I haven’t gone back to it, and again I don’t know why I haven’t. I feel a major part may well be that my BG is now at a “better” level of control and my mental health has improved due to it. Has sorting my BG almost aided what was causing my lack of control? I don’t know and probably never will. I wouldn’t be surprised if part of what caused it is also what causes me to push my infusion sets now to 4-5-6-10 days at a time, pushing the boundaries again. I know I shouldn’t but do still do it. It is probably also part of why I utterly loathe the low-carb brigade and their agenda to make all diabetics the same. Frankly just wish they would simply fuck off and leave us all alone and go look after themselves and shut the hell up. We all have our own paths, and this is mine so far. Is it perfect?! HA! Not in the slightest but I am still here and doing things my way. If anything even more entrenched into doing things my way after the battles so far.

Taking on the World

Recently (ok maybe not so recently) I’ve managed to tick off a few folks, which let’s face it is something I am pretty good at. I did get criticised for supposedly a lot of wild speculation which I think we’ll see in the next few years more as predictions than simply speculation or possibly pretty good looks at reading the market. Anyhow, I wanted to get back onto one of my main loves and that’s tech (even after leaving the industry), or in this case again diabetic tech and let my “speculations” run wild!

Earlier this year it was asked to the diabetic community what it was that we would be willing to give up to be able to fund what we wanted. Partly in regards to the upcoming costs of CGM use with modern APS systems since every new pump from now on is going to be using them for this (which is long overdue and generally fantastic news). So I read it as pretty much one of the main things many Type-1’s want as it’s as near as dammit we get to a cure in a box that’s attached to us! Now if we believe that such systems would ever be able to be used with every Type-1 diabetic in Britain (yes a very broad statement), and that CGM sensors lasted only as long as the manufacturers claim (we all know they can last far longer but we can’t sadly use that for doing costings) than the cost to the “diabetic budget” for this would be a third of its entire budget per year! Basically, an utter shedload of money that is not exactly easily covered from anywhere. Would we prefer to have one of these systems but be willing to only see a DSN and Consultant once every 10 years? Would we be willing to massively reduce who has access to this technology to only the children who would have to give it up when they move to adult clinics? Hard choices would have to be made as the funds available sadly aren’t what a friend recently said in another argument discussion that funds are supposedly infinite. So where do we find a solution? What are even the problems which really need addressing?

Part of the problem when discussing these new shiny devices is we have manufacturers playing to the masses of the diabetic online community using some pretty old school tech. product marketing strategies (along with extensive social media marketing campaigns, sheesh the number of them on Facebook!). The good ol’ make this scarce, throw in lots of freebies to friendly bloggers and getting them raving about the device, it doesn’t matter how old or primitive the tech is, as long as you claim in your press release its new and innovative they’ll keep wittering it until everyone believes it actually is. Then all their followers go queue around the block for it no matter how much it costs or how limited in features set is. It might not even work fully but if you have the following, it’ll sell! Add some limited availability due to “excess demand” when it launches and it’ll make even more people want it! Phone companies, computer companies, and games companies have used this same tactic for well over the last decade and to see medical companies using it now is nothing short of irritating. We are even seeing it with lancets in recent months and insulin! Part of the problem with this consumer-driven market is the pressures it is putting on our healthcare professionals and the NHS as a whole for it to be able to provide all these shiny new devices every five minutes when the manufacturer launches its latest with a new go faster stripe.

This results in patients screaming for the latest technology and putting huge pressure on health care professionals and the NHS as a whole. In a recent discussion about tech use with a large group of diabetics it quickly became apparent the system the clinic I am under whose policy of only upgrading pumps when they fail, thus allowing their resources to stretch to allowing more patients on pumps as some patients (like mine is well over 7 years old now) can make them last. If a patient can make one last eight years, that has funded a further pump for another patient! This system sadly seemed totally alien concept for many with most immediately chasing a new pump when their current was approaching the end of its warranty. One had received eight pumps in ten years by screaming and shouting for the latest tech! It frankly sickened me the utter waste and abuse of the system, and again draws out something that really needs to be addressed if only to save the earache of our HCP’s.

One way of solving this greed of the diabetic community for the latest shiny device is to simply not have any of them. Problem solved! This does cause problems with our care slipping significantly though and many of the problems these devices solve sadly come back to bite us hard, and the end result would never look good in government statistics. Alternatively, we could just have one chosen device in each area chosen by the NHS as a whole and that’s it for us all to use. The NHS sets up a four-year contract with manufacturers to buy x number of z pump/meter/CGM and that is the one pump/meter/CGM available for all on the NHS. The result would be far lower costs due to being able to negotiate large deals (or should with the companies competing heavily for the exclusive contract). It also makes decision making and what knowledge HCP’s need to learn on devices much easier and less costly as there are far fewer devices to learn. Yes, the diabetic community would whine like hell as they couldn’t have the latest shiny device of their choice, but personally, I feel this is a far better acceptable trade off even though many would probably want my head on a pole for suggesting it. Is that the only possible solutions though?

WARNING: I’m about to go off on an 11073-10417 tangent!

What can be done to solve some of these problems we face and do the make the world a better place thing too? This is going to sound odd but ISO/IEEE 11073! You are no doubt wondering what the hell am I on about with this or are busy Googling it up out of curiosity. As always with ISO and IEEE things, these are international standards. This one was created about a decade ago to make any and all personal medical devices communicate together, namely things like blood glucose meters (specifically IEEE 11073-10417) pumps, CGM’s etc. Hang on a moment, yes I am saying that there is an international standard to enable us to use a Medtronic pump which can talk to a Dexcom CGM which uses an Abbott blood glucose meter?! Yes, I am!

How is that going to stop the problems of the NHS from greedy companies, bloggers and a shiny device obsessed diabetic community?

Why don’t companies do this then? Quite simply it’s not in their interest to do so if they can keep a patient on one of their devices locked into their own “ecosystem” of devices. It’s not like any government agency or anyone in a position of power would dare stand up to them and force them to play by an international standard when they can have their own lovely closed eco-systems locking in patients, medical professionals, hospitals, trusts, even countries into their closed market and being forced to use their consumables and services.

What would occur if they all worked on the same playing field (the international standard)? First off we would have an open competition and that prospect along scares them senseless! We would (eventually) end up with a market for medical devices along a similar market to mobile phones where it doesn’t matter what device you buy, all would be able to call each other and connect to any Wi-Fi hotspot anywhere. The best device for the best job and for that right patient would win! It forces development. It forces companies to strive to improve and not stagnate the market into the usual status quo (but without the good riff) we’ve all had to live with. Different price points should immerge with differing feature sets to meet markets to fit patient needs. Yes, initially they will complain like hell about it and no doubt throws around the usual excuses of security of patient data, it’s not profitable, they can’t provide the same care talking to an unknown device, it simply won’t work and probably a dozen or more excuses. But in the end, the result would be a far more competitive market in price and range of solutions for us all.

So a huge win?!

A huge win in the long run yes. It also benefits smaller companies and also homebrew technologies like OpenAPS (an open source design and software to make a homemade artificial pancreas out of computer components and various pieces of diabetic technology) as open standards for things to work each other would allow development far easier and on a par (frankly it already is if you don’t mind some tinkering) with solutions from medical companies. Part of my scheming dreaming has always been that given a list of compatible devices every T1 in the UK with a pump could be retrofitted out with an NHS own brand artificial pancreas (running OpenAPS) built around a custom manufactured Raspberry Pi Zero (reverting to the Pi as it was used in earlier versions and since Intel killed the Edison that many current OpenAPS systems use it makes an easy solution) from a company like Element 14. Costs would be peanuts (in the grand scheme of things, under £40 per device on back of envelope calculations) and also a huge PR thing for the NHS (dare I say it) in the post Brexit era for having something manufactured in the UK (Wales counts right?). Development to reach the final “product” could be run through UK Universities. Heck, the NHS could even sell them abroad as kits if it wanted to make some cash on the side?!

We also have recent developments in the US, which while we may believe won’t affect us at all, let’s be honest about things that in reality will actually have a much larger than any policy change by the British government or decision by the NHS. The decision in the US relates to how devices are funded, or not in regards to diabetic medical equipment which talk to smartphones. The problem is that a smartphone has become an integral component talking to pumps, CGM and some blood glucose meters and since only 77% of patients have a smartphone than surely it should be funded by insurance/Medicaid as well? As expected with people clambering for a new $1000 iPhone they now all want that “free” paid for via the medical provider. And so came the decision this week that due to such costs the insurance/aid companies involved will no longer fund any device which talks to a smartphone. This result hits the CGM market very hard and effectively overnight makes the market for the Dexcom G5, Eversense, SugarBeat and the upcoming Abbott Libre 2 pretty much devices without a market. While this might be an issue for the US at the moment the same issue can easily be put to the NHS which in a similar situation and cannot afford to even consider funding smartphones to patients. Hopefully, many of us will sensibly say why would we ask for such a thing? 80% of the UK already have one so what’s the issue? Well, there is that 20% who don’t. We hope it won’t impact equipment availability in this country but in reality, it will as once device makers move away from smartphones/watches which will be driven primarily by the US market’s change in direction we will simply have to see what devices remain for us to use. Yay for bulkier future D tech!

Yes, this is a huge flight of fantasy for now and I hope I’ve given a few of you some thoughts. I admit sadly I can’t see any of this occurring anytime soon, if at all but I hope it doesn’t stop me underlining a few of the points I’ve been trying to put across recently in regards to technology choices I hope. Keep tinkering with what we have and please remember try not to be greedy with pursuing our equipment requests!

Why The #MakeItHappen DiabetesUK Campaign For #Flash Glucose Meters Is At The Cost To Diabetes Patients!

I’m about to frankly tick off many yet again, but as ever I am going to just ignore the usual sheep of the diabetes community and go off on one of my usual rants from my nerdy ancient diabetic perspective. I’ve made my dislike for a recent Diabetes UK campaign to have Flash meters (well there is only one so it’s not really meters) available on the NHS. So I thought I would pad out my explanation as to why I find the entire campaign frankly wrong and feel if the government support it, it would be effectively just appeasing an online campaign but at the cost of all diabetics in the future.

  • Flash “meters”, for which there is only one. The Abbott Libre. The campaign doesn’t realise that if it makes it free it is simply making a single meter the default meter for all diabetics. Why do I say that? Simply as we all will switch to it as we are frankly fed up of finger tests. This action is something which would be shaping the market in such a way that is uncompetitive to all other manufacturers and as such limiting access to newer and better technologies for patients, but more critically it leads to the next point.
  • The Libre isn’t an accurate device. The blood glucose meter part of the Libre setup isn’t the most accurate of currently available meters. It’s frankly not even close to it from the annual testing of meter results. Some might scoff at the fact that a 0.3mmol variance is “close enough” but as I’ll come to soon, I am not one of those. This is also just the blood glucose meter part, the sensor using interstitial tissue is calibrated to be accurate with that meter and itself can be up to 15% further inaccuracy.
  • While using FGM (Flash Glucose Monitor) has huge benefits for giving the same levels as CGM (Continuous Glucose Monitor) for recognition of patterns in our treatments so we can maintain them more easily, which is by far its best feature, the device does not support (from any certifications I’ve read on) for patients to administer and adjust their insulin levels based solely from the FGM readings. Some will instantly cry that this doesn’t matter and that is why it has the blood glucose part of the scanner. But patients ARE using it for such, which along with the inaccuracies above should represent a major concern.
  • I am probably going to upset more with this comment, least alone Abbott, but the Libre is basically a rushed to market “beta” product. Half-finished basically! Am I being harsh here? Yes, I am, but my reasoning is that the lack of alarms as found on a true CGM is a fundamental major flaw. Alarms found on CGM are a huge safety net for us patients, we are going high, we are going low, even when fast asleep we are woken by the devices to tell us to deal with something which if ignored could quite easily mean we don’t wake up from. Some will argue it’s a different device, yet these are features which are coming in the next version of the Libre (which isn’t that far away) which is basically (yes technobabble time) just the current Libre sensor with the wireless system changed to using BlueTooth LE from the current NFC so it talks to a phone, and the phone does the CGM alarms part. Basically, from what Abbott is doing is the same as what many games manufacturers do, they do early access previews people pay for to fund the development process to get the one they intended all along but if they can get you to pay for it instead of them, it’s great for the company isn’t it?!
  • The next version of the Libre which this campaign is solely about protecting and making the default diabetes care meter is going to be a CGM. The FGM step which this campaign is so busy trying to sell to the government is nothing but a soon to be end of life product. When it does get replaced soon what happens with this campaign? Simple. Abbott continues to sell it’s out of date product since the government will be funding it for years to come. It’s newer version which people will suddenly (sadly we just have to watch what happens online with any kind of new diabetes technology for this) will suddenly start screaming for the new version. Which isn’t funded and not likely to get funded as explained next.
  • Diabetes UK claims that this campaign doesn’t stop it’s “support” for CGM to be funded. Let me simply counter this as YES IT DOES! Why? The NHS is frankly skint and campaigns to get it to fund anything is bad enough, but to fund something that is “close enough” to a CGM so that CGM needn’t be funded properly in the future is very dangerous. We the diabetes community need proper CGM funding for as many patients as possible. Why? It’s more accurate this FGM and the alarms can be lifesaving. Some CGM is also (Dexcom) certified to make insulin adjustments and eat off its results. In a time when the government spends using “austerity” very often do we really need to pour money at one company which itself is moving to CGM on its currently backward technology? And that funding could be used actually to fund CGM of which there are multiple manufacturers providing a competitive and more advanced market of which Abbott themselves will be joining with the Libre II.
  • CGM funding is critical. We are now receiving meters which can use CGM to disable or increase our insulin levels to adjust to the behavior of our blood glucose. Full artificial pancreas solutions are very close with many manufacturers very close to release on these products. But they all need one major component to make these new features usable, and that is CGM. Diverting funds away at this point in time is frankly going all out to win a minor ignorable battle so the war can be lost. We need to focus our campaigns and asking for funding for the devices and care we actually need and not the latest shiny FLASHY device that is out today.
  • Linked to above, we also have cost. Yes, it is somewhat “cheaper” compared to CGM but for sensor costs for the Libre are more expensive than Dexcom sensors, although being cheaper than Medtronic’s currently. A Libre sensor does last for 20 days which is nice, a Medtronic is designed to last 6 but can quite often last 12+ days while a Dexcom is happy to last a week and will often last anything from 21 to 50+ days. Dexcom has stated the next sensor tech will double life of them. The costs between the systems are pretty similar over a long period of time and that is before the NHS purchasers can (they should anyhow) be able to wrangle any cheaper deals for buying in bulk.

These are the concerns which I find the current campaign is just ignoring and personally why FGM funding should not be provided on the NHS. It damages CGM funding which SHOULD BE FUNDED! The benefits of CGM for patient safety, cost, and a much more competitive market are far more beneficial for all diabetic patients than this current misguided “I want this latest shiny device now” campaign.


In an interesting addition, Dexcom is offering the G5 Transmitter with a sensor for £160, so yes a touch more than a Libre, but the sensor lasts longer, and replacement sensors are cheaper and last longer. It talks all the time to Apple IOS and Android phones and watches, does alarms, and can even open your BG readings real time to parents or family, whoever you want to view it BG readings. Meanwhile, DiabetesUK and the like keep insisting the Libre is the better device?! Like on WHAT planet?!

A Little RLI2Paris Data

Been rattling through the stats from my Lan2Paris ride, some interesting. Changed the front derailleur a total of 199 times, and the rear 4666 times, resulting in 29% Di2 battery used (which includes all the additional Di2 items such as wireless kit). Average cadence was a pathetic 69 rpm. Average heart rate was 131 bpm with a peak for the entire ride of 182 bpm (Mow Cop). Average speed was a dismal 16.99 km/h with a much more respectable top speed of 64.3 km/h (on way to catch the ferry, coming down Mow Cop only got up to 57.34 km/h). Total ascent was 5433m and calories burnt was lower than expected at only 28329. Total distance was 790.94 Km, and average BG was 6.15 mmol/L.

On notes about the tracking system…well it sucked. That needs A LOT of work on it.

The Final Push!

And so the final push, little sleep really due to the ferry but think I made a couple of hours.

Finally on French soil and what a cycle path. It’s basically an old railway line, like so many. The difference is the surface, wide, flat, very very few roots, trees are mostly set back to prevent this, cafes, bars, bbq spots and picnic areas line the route. Works really well. Most interesting was the no e-bike sign on it. Asking a local basically they got banned as people were being Muppets and de-restricting them, it was becoming lethal on the route with them flying up and down when it comes to busy times. Idiots spoiling the fun of others always a shame.

Pressing on the heat was really becoming a problem. The forecast said about 25C but riding I was baked. Insulin off and shoveling in fuel want helping and levels were being a pain (pump is off but levels are being drained like silly things). Blood meter kept overheating and hiding it in a pannier helped a bit… No so easy to access though. Even the phone went crazy with temperature warnings and refusing to run more than one app at a time due to heat and even shutting down for a while. It was hot. I needed more drinks and food as I had depleted my supply of gels, Shotblocks, and Cliff Bars. So I followed the signs for a Carrefour and restocked filling the bags with chocolate brownies, it’s the same as an energy bar right? And a load of bananas and Pringles, need the salt of course! Sitting in the car park under a tree refilling my bottles and getting some lunch in. Was nice actually if it raised a few eyebrows.

Well, that’s half way to Paris (from the ferry) and the heat is a killer (25C). Pumps off but levels are being drained like silly things. So having lunch in a Carrefour and filling the bags with chocolate brownies, it’s the same as an energy bar right? And a load of bananas and Pringles, need the salt of course!

Venturing on the route for very weird, thank you again Google! It started off fine avoiding main roads, then through back roads which were nice, then through little tracks which started to feel like yesterday going all cyclocross again, before it ends in a middle of a field with nothing but wheat for miles and three tractor tracks. Google note maps tractor tracks and uses them as cycle routes?! Alternative route offered by the Garmin was a further 50 odd miles so that was out. Rattle, rattle, rattle this isn’t fun, rattle, BOOM, what the!! Some blinkin’ yakka (for those who don’t speak Cumbrian a yakka is another term for farmer) was taking pot shots, feck, feck, feck, did set a Strava time if seems, phew!

So I finally reach Clergy, on the doorstep of Paris. The wonders of Googles, I’ll find a faster way through here was a slight snag (not like it wasn’t earlier). As ever it did it’s best to find a route which doesn’t put you on roads. Great!? Not so much when it sends you on diversions through a total warren of tunnels in a tower block nightmare. Up and down ramps and places, at least I blended in so well in this surrounding no one noticed me 😛

Upon escaping using the Garmin find the Eiffel Tower search it found a nice road route away from the tower blocks. Paris traffic is interesting, you get cars, bikes, buses, scooters, lorries and pedestrians seemingly just making things up as they go. But oddly no one seems to get hurt. The more you ride it, the more it kind of makes sense. Red lights are optional for all, but if someone stops you all must. Bus and bike lanes can be used by anyone. And bikes can use anywhere they feel like, just as can pedestrians. Total sense!

Eventually, I made my way to the tower and got a few pics. Say for an hour almost just admiring the view and the long fight to get here on the trip. But I best get to the hotel… *facepalm* it’s 12km away!

On the way to the hotel, when sitting in a bike lane with actual bikes in it, I get chatting to a lad who Kickstartered his own bike brand. He designs the frames, then ordered in from abroad to be built in France. All city bikes mind, but interesting to hear how he started it. Then we got onto Lancet and we were still blocking traffic 20mins later.

Messy Day

A messy day today. The “original plan”, dreamed up last night, was to wake up super early and blast (yes that might be also a slight issue when riding the bicycle equivalent of a super tanker) down the “empty” main roads. Lights charged, all set for it. Slept in! So that utterly went out the window. Eventually got going and decided on the lovely cycle path down the canal…It was a foot wide single-track! Think next time I’ll use the Marathon Touring Plus tyres as they have some side knobblies and deeper tread which could of been handy today. With the weight of my kit it was a very dicey ride and it was nice to get onto National Route 6. Wow, it’s amazing (well this bit was but later learned it was just a good bit of it) wide, smooth, lines of trees both sides of the route perfectly placed. While a beautiful ride it was really destroying my progress and I needed to get on with things. Although the whole getting going thing wasn’t wanting to happen much as felt very fatigued. Although it may of been more related to the next issue.

Eventually got going and decided on the lovely cycle path down the canal…It was a foot wide single-track! Think next time I’ll use the Marathon Touring Plus tyres as they have some side knobblies and deeper tread which could of been handy today. With the weight of my kit it was a very dicey ride and it was nice to get onto National Route 6. Wow, it’s amazing (well this bit was but later learned it was just a good bit of it) wide, smooth, lines of trees both sides of the route perfectly placed. While a beautiful ride it was really destroying my progress and I needed to get on with things. Although the whole getting going thing wasn’t wanting to happen much as felt very fatigued. Although it may of been more related to the next issue. Bloods decided to play silly things, sky high all day and throwing insulin at it to no avail. Became more a case of wack-a-mole with BGs. 2x, 3x, 4x the insulin and the sods wouldn’t get into single figures. Not even needing to throw any food into the mix, I knew I needed food, but couldn’t with the

Bloods decided to play silly things, sky high all day and throwing insulin at it to no avail. Became more a case of whack-a-mole with BGs. 2x, 3x, 4x the insulin and the sods wouldn’t get into single figures. Not even needing to throw any food into the mix, I knew I needed food, but couldn’t with the bloods up there. So find a nice spot for a roadside infusion set change. Sorted!

Next problem, food! Saw a pub so thought great. Pubs seem to be a huge rarity down here. Seen more closed ones, for sale ones, or looking for lease ones than open pubs! So dropped in and out was packed, huge beer garden, barbecue bar (think a shed that had been creatively modified to cook food outside with a good selection of drinks), or the bar itself which had beams which scraped my head on! The barman was huge, well over 6 foot and was crawling around the place. Great lunch! Back on with the afternoon I may have got involved in a Sportive somehow. Was clattering my way downhill and got on the back of a small group just add we went through the camera… So somewhere there’s going to be pics of a loon on the back of this group… Will have to work out which it was!

Back on with the afternoon I may have got involved in a Sportive somehow. Was clattering my way downhill and got on the back of a small group just add we went through the camera… So somewhere there’s going to be pics of a loon on the back of this group… Will have to work out which it was! Interesting thing (and yes very odd to comment on) for the day, the drains in Windsor are recessed into the kerbs. Not into the road at all. Very American in style and not sure if they do it for the horses here, lots of deposits left by them on the roads, but it makes for a car better road surface for everyone, cars, and bikes as there’s no sinking wheel breaking death pits in the road. Wish all our roads used them.

The interesting thing (and yes very odd to comment on) for the day, the drains in Windsor are recessed into the kerbs. Not into the road at all. Very American in style and not sure if they do it for the horses here, lots of deposits left by them on the roads, but it makes for a car better road surface for everyone, cars, and bikes as there’s no sinking wheel breaking death pits in the road. Wish all our roads used them. Had some nice chats with people, was this old grandad Sikh

Had some nice chats with people, was this old grandad Sikh with with niece in Slough. We got chatting about the ride and all the tech. He was fascinated by a bike having a “Tomtom” and was amazed by the radar. I skipped on the other bits as I could still be there. Also met another Chris. This one came alongside while riding through a forest and had a chat about the kit and the charity. Tomorrow is

Tomorrow is rest day…Yay! By that I mean I only have to ride 48 miles and have to get to the ferry for 11pm. So should have plenty of time to have a mooch in the Evans I saw nearby (if it’s like the one in Glasgow I spent 15mins roaming the place and no one even said hello), this is totally out of checking out the competition you understand, and also get a good breakfast in I also noticed nearby. Then off to Brighton to nose around for the afternoon, early evening before the boat and leaving Blighty.

Odd Day.

All started well, was making pretty good time and even planning how much further I could push things and maybe eat a bit out of tomorrow’s ride. By the time I got through Rugby I was totally cocking around and had found a new game, instead of saying hi to people say something else, so after a few verses of Klingon and a bit of Sindarin I think I’ve left Rugby baffled 😀

So I decided on some breakfast and made do with some things I picked up earlier in my travels… Not such a good idea rapidly can’t to mind. Terrible stomach cramps, blood levels going crazy, wanting to throw up. Ugh not good! This went on well into the afternoon and all the stopping and starting it was causing really scuppered progress.
By Northampton the Garmin decided it would be for the best to put me on the A5 AGAIN. What’s with the thing?! I’m beginning to think it’s deliberately trying to kill me! Saw some cycle paths so took off down them. Sorted much to its annoyance. Soon I was on the CMK, a smooth wide track for bikes into Milton Keynes, which connects to a brilliant bike path structure going everywhere and keeping well away from the roads. It’s how all bike path systems should be!

Soon I was on the CMK, a smooth wide track for bikes into Milton Keynes, which connects to a brilliant bike path structure going everywhere and keeping well away from the roads. It’s how all bike path systems should be!
Lancet developed an off pssh sound coming from something drive train related. Not sure what but the amount of crud on everything can’t be helping. So that will be tonight’s plan! The rain which had been on and off with quick showers since mid morning then went full on Keswick. Lovely, to went and hid for a bit under some trees and find this lass with a puncture so loaned her some proper tools. The

The rain which had been on and off with quick showers since mid morning then went full on Keswick. Lovely, to went and hid for a bit under some trees and find this lass with a puncture so loaned her some proper tools. The tyre levers she had were part of a multi tool so utterly a waste of time. Pedro’s to the rescue! And a proper pump too.

So given in for the night, early finish for once and decided to rest my stomach and prep for a good ride tomorrow.

Hills, Horses, and Garmin Gremlins.

Early morning ride to make up for yesterday. In the Keswick Bikes green jersey this morning, not quite the sprinters jersey but hoping that it will help make up plenty of time!

With the disastrous start yesterday I needed to make up some ground so set off at early hours on the back roads of Cheshire which felt very much like home which was a huge bonus. Even paid a quick visit to Jodrell Bank which is HUUUGE! I would say WOW but might get that’s probably really playing with words 😛 Sadly I couldn’t stay long to get a proper nose around as it was early hours, and I needed to get some miles in.

Eventually reached the town I was meant to stay in last night, Mow Cap. I’m pretty glad I didn’t get here last night as it would have killed me. A real swine of a climb right from home with a heart and lungs busting killer 25% summit. As some of the mHealth folks know I tend to have two modes with climbs, the grind and mutter, or the full on Jensie mode calling the hill every insult in the book! Will let you guess which this one was 😛 Total agony but at the top was an amazing tower ruin. On a clear day, the view is fantastic.

The descent gave my brakes a good workout with the load but still feel they could easily do far more. Starting zapping through towns and also taking a few pics of the various churches and old buildings. Reached Stoke in no time and a silly 6 lane A-road in the middle of town really wound up. So, in the end, thought sod it and took off down a cycle path which upset the Garmin no end. The path was great, right through the centre and I just kept on it. The Garmin kept attempting to correct me and go back to weaving though no end of back roads and traffic jams! Pfft to that!

Soon after the Garmin decides the route we are on is incorrect, so it attempts to divert me to Derby! OK, it might be fine to drop in and see my Aunt but not by adding an 80-mile diversion! So after losing a few miles to it besides figuring it out it was very annoying. Seems good old turning it off and on again fixed it though. Solution to all tech problems!

Passed the JCB factory, exactly at 12.30 as lines of cars, bikes, and everything exited the place filling the road. They had a huge toy sandpit, as in 6+ football pitch sized filled with people playing with all of JCB’s toy collection. Very impressive!

The day progressed along nicely. Found a nice lil Pinarello shop for a quick nosey. Later on, a group from it went flying past which I couldn’t stick with at all with me at my pedestrian pace. I did meet up with them down the road, and they have a shop ride out in middle of a Friday afternoon and the company van comes out to a pub they’ve ridden to and gives them the lift back to the shop. An interesting concept it seems.

Soon after met another group out, felt sorry for the poor guys at the back getting passed by someone with panniers on though. Was a bit of a shame the rest turned off as I was really looking forward to introducing them to the 10 cog on the next descent 😀

Eventually neared Nuneaton. Uttoxeter was great, very bike friendly to get through so was expecting similar. But sheesh no. Not even a handy pavement to hop on when trying to navigate the A5. The road has a 50 cap, not like anyone used it! Scared me witless and I had to get off the road almost instantly. Daft thing was I needed to get preferably 5 miles down it, but couldn’t see that happening without getting killed! Jam packed with traffic all going 70+. Terrifying! In the end though I had no option, it was the only way. Considered sitting or out till like 10pm and hope it got quiet. In the end found by dayglo’s, fitted my amazing Bontrager Flare RT to the rear, charged the radar, and dived into the maelstrom. Dove down the first exit road I could much too the annoyance of the Garmin but I didn’t care, I was off that road! Tomorrow wise I’m looking for another early start to get well away from the traffic chaos of Nuneaton and to give me plenty of time to deal with Milton Keynes and hopefully get a chance to visit Bletchley Park.

Tomorrow wise I’m looking for another early start to get well away from the traffic chaos of Nuneaton and to give me plenty of time to deal with Milton Keynes and hopefully get a chance to visit Bletchley Park.

Lancaster to Paris – Setting off on Thursday 18th May

 

The Royal Lancaster Infirmary last month opened its new Diabetes Hub to aid in even better care and research. Setting off on Thursday 18th May Allan will be riding from the Diabetes Hub to the Eiffel Tower, again on his own with just a bike, a tent, and panniers loaded with various pieces of equipment, medical supplies, and food. Along the way, there will be both a blog and live tracking on this site.

A point of interest for the ride is also the bike which Allan will be using. Made by himself, hand cut, shaped and welded by the lad himself. He is actually finding it somewhat amusing as he classes it as “the most advanced bike in the world” which raises many eyebrows as people wonder what it is he is going on about as it’s just a steel framed bike, lugged, resembling something to some degree as something from the sixties or seventies. Upon closer inspection things tend to differ though, the quiet monstrous hydraulic brakes which are routed internally, the electronic gearing, all of which are state of the art but hardly making it that advanced. An even closer look and the gearing system is some very strange hybrid, half mountain bike and half road bike, while very unusual still not that “advanced”. But then there is all the other strange electrical going’s on’s. The bike is sporting all manner of strange sensory equipment, various wireless systems, it is talking to a phone, the cloud. What is going on with it?!

The bike, or Lancet as he refers to it in reference to finger pricking devices used by diabetics (and a running joke in the diabetic world as they are made from steel and last forever never getting swapped) uses it’s sensors to read Allan’s insulin pump and takes his insulin levels and amount of food he’s taken. It is also taking his blood glucose readings every four minutes and attempts to predict the direction of his blood glucose and reducing or increasing his insulin levels based on those directions. Reading sensors on the bike for his power output and heart rate it’s also able to make predictions based on the amount of food he has taken as to if he’ll need more based on the earlier readings for insulin in his blood stream and the direction of his blood glucose. All this information is sent to a small Garmin screen so he can view his current blood glucose level and see what the onboard systems are doing to him, alongside normal navigation and riding information. Along with his self-made concoction of a bike this also self-made ridable artificial pancreas based system makes for a very unusual and unique bicycle.

Allan expresses a huge thank you to everyone for the response and donations thus far. He also thanks his local GP’s over the years who have aided Allan with this condition. And for the fantastic team looking after him at the Royal Lancaster Infirmary he is immensely grateful for getting him where he is now, and for the check-up, he has to have before he’s allowed to set off. Ok, maybe not so much that last point!

If you wish to make a donation they can be made online at http://bit.ly/2rfEucC