Saving the NHS Money – A Good or Bad thing?

In a recent conversation with a group of old-timer diabetic’s and as ever we all got to discussing the past. Having only one glass syringe, a small box of 4 2″ needles, a whetstone to sharpen them and a fish steamer to sterilise the syringe. We didn’t have blood tests, we peed into a test tube and dropped a tablet in which changed colour and used a colour chart akin to something resembling a Dulux chart to vaguely get an idea of our blood glucose levels. Eventually, we got strips we peed on, but due to the cost of these to the NHS we cut them up to make them last. We eventually got disposable syringes, but due to the costs of them compared to our glass syringes, we were asked to reuse them. Blood glucose meters came along, again we cut up the strips to make them last and the reusing of lancets started and still continues to this day. Pen’s came along and again we had to fund needles ourselves (you got three with a pen but in typical NHS fashion it was deemed that was enough to last us). Over time the needles became available on the NHS and once more we were asked to reuse them to save funds.

We’ve now reached the turn of the millennium and with it, things begin to change. To some degree anyhow. Needle use is changing it every time. Pumps become available and with these devices we have infusion sets being changed every three days, always, never a question that we all do that isn’t it *cough*. Course we don’t unless it’s a healthcare professional asking. We’re still using that original box of lancets though! Even moving on to early CGM technology, it has been common practice for DSN’s to recommend restarting of sensors to save the NHS funds and gather more data effectively freely once it’s into the second week or longer. Until the last eighteen months, it was also a practice locally to not to renew pumps when they went out of warranty. You ask why? Because if you have two D’s who manage to extend their existing pump another couple of years it’s funded a third patient to also receive one due to savings in renewal costs. It was a simple practice to do and if it’s not broken, why fix it? Pumps haven’t advanced a great deal in the last 15 years (yes we have hypo-prevention on some, but without CGM those features are disabled so basically no change to the basic mechanics) so why does the NHS have to waste funds on renewing them? If they break yes, not a problem they swapped them out but not at the whim of the medical companies. Sadly though this practice has now stopped and they (have) screamed my pump needs upgrading, this and that, they even once booked an appointment for me to receive a new one. Yes, my good ancient 530G is going strong, it’s been through hell and back and is hacked to silly levels which make it more advanced now than anything on the market. Basically, I have and will continue to turn down a new pump for as long as I can.

You are probably wondering where I’m going with all this, or am I on just some nostalgia trip again. What I’m trying to show here for a long time it has been common practice to “break the rules” set by the medical companies. Be it by ourselves doing it to make our lives easier, or under NHS recommendation to save funds. Why is this so important? Simply put the largest step forward is diabetic care will come with artificial pancreas systems (APS’s), and all but two of these systems either already available or in development use Dexcom sensors. This is why this device is the keystone to gaining access to these systems and as such is so important to us.

To fund Dexcom sensors for myself works out of £623 per year, but I “break the rules”. That’s paying full price for them, no discounts, just buying them directly off Dexcom. With a few minor tricks such as making sure the area the sensor is going is clean first and once applied surrounding it with KT (physio) tape I routinely get three to four weeks from a sensor. Sometimes five, but only once has it only lasted for two weeks. Overall I get give or take a month per sensor just by being careful how I use them. If I used them as the manufacturers recommend for only one per week my costs would be £2489 per year, unaffordable basically. Somewhat of an increase no? But this is just me isn’t it Knowing how I restart sensors is all well and good, but what about other people? Do they? Am I one of the few who does?

So I ran a few polls on various forums and online discussion groups to gather some information. From a relatively small amount of submissions from 346 users, mostly from the US where Dexcom use is far higher, taking the average sensor lifespan the average came to 21.43064 days…Let’s just call that 3 weeks! Interestingly the longest sensor lifespan was a huge 51 days with over 75% of total users averaging between 14 and 35 days. Some impressive results for something that is only supposed to last for 7 days, and I guess my results amongst them all are pretty average.

While my discussion above is all well and good from a patient perspective, we now live in a world of ambulance chasing lawyers which is just outright crazy. Is the modern move to enforce medical company rules a result of this? Quite possibly. In a world such as this, the NHS has to throw 4x as much money at something that a self-funding patient would do. Can the NHS recommend us to carry on restarting sensors, can it ask us to refuse to renew pumps? Yes, it could but it would be opening itself up to the lawyers. As someone who tinkers with OpenAPS and been through hell and back with my various diabetic issues over the years, I frankly don’t give a fuck. I simply want access to the best technology to improve my care. So what happens if the NHS does offer access to Dexcom sensors? I get a years supply and 3/4 of them I sell off on eBay? That’s not right in any sense either is it! But that is what could very easily occur. This means more people would then be gaining access to the technology that is being prescribed by the NHS, but they are also profiteering from the NHS in doing so and in doing so would be stealing from the NHS and other patients.

From my patient perspective, I only see a couple of solutions to all this. Firstly we ignore it and let the NHS spend a fortune on the technology and fully fund it, this is all great but due to how long the sensor last they’ll end up like expensive lancets, which will end up on eBay being sold off. This also limits access to the technology due to the extremely high costs involved and as shown most of that would actually become waste. The practice of sensor restarting is common knowledge online and has been for the last decade ever since the Dexcom 7. The NHS can’t recommend the practice of restarting sensors, but it could be far smarter with how it prescribes them. By only allocating a smaller allocation of sensors for a year and leaving it up to the patient to decide to only use them to monitor for part of the time, or to restart sensors off the record and making the devices last and as shown above, it would mean then it would enable 3-4x the number of patients to gain access.

The final option is one I brought up in an earlier blog post, do we as patients have to be as greedy as we are? Do we have to keep badgering for the latest shiny bauble such as the Libre or the latest pump? I’ve seen parents of diabetic children who’ve screamed at their doctors annually so much they’ve managed to get through ten pumps in twelve years. It’s one of the things which winds me up and they have the latest shiniest bauble. We ain’t cats! When our pump comes to the end of its warranty, no thanks, it’s fine I’ll continue. The same goes with CGM sensor tech, we get a months prescription, we don’t get a new one for four months. We restart them, don’t tell the doctors, and don’t sell them on eBay. We all win. The NHS saves money, we get the best care we can, and we’ve also opened up this technology to 3-4 other diabetics as well. We the patients can help ourselves, other diabetics and the NHS, we just need to not be greedy with what we use. A sensor is basically a funky lancet, let’s continue using them in the same drawn out way and make them last forever! (Ok maybe not forever, but a fair few weeks anyhow).

The Beast from the East? 

 So, we are “suffering” a snow storm which the press has named the “Beast from the East”. I woke up this morning and looked out to see everything white and couldn’t even see across the street with how thick of the falling snow was. It looked great but the news was full about how it was causing schools to be closed and trains weren’t running….The country as at a standstill due to the weather, yet again! 

 Ready for anything!I have a opticians appointment though and me being me, my optician is a minor 52km away. For those of you who haven’t followed I don’t drive, at all. I once had a provisional license way back when but due to my wondrous twenties and my three times a week scrap ups by paramedics, I wasn’t ever going to be allowed behind a wheel. No loss though as while I’m more stable these days those days taught me that I don’t need a car, I have a far better form of transportation… A bike! 

 Bontrager MittsSoon suited up in my thermal layers, thermal snow boots and lobster mitts, along with a thermal balaclava. I’ve come to really like Bontrager kit for this stuff, I’ve used a lot of brands but the Bontrager kit is simply amazing. The balaclava for example just fits perfectly, no ridges under the helmet like I’ve found with Gore and Endura thermal caps and no bunching up like with Buffs with helmet straps, it just works and works very well. The boots, totally waterproof, incredibly warm and comfy. I can bang in 52km, walk around a city and ride home again and my tootsies were still nice and warm. The same with the mitts, brilliant if looking rather odd. Even on my phones touchscreen, they work brilliantly, far better than many thin gloves on touchscreens which are a huge surprise. Anyhow, this is sounding more like a product review which it isn’t intended to be. 

Bontrager Old Man Winter BootsThe ride was best described as “interesting”. It was like an old school turbo session with the resistance cranked up. Lancet got so much snow and ice caught under the mudguards that it was squeezing out like toothpaste from a broken tube. The resistance it gave though made for some slow and pressured progress. Lancet’s 37c rubber proved very adequate for the conditions and only slipped a little a couple of times (leaving cycle paths and once on a steep slope) but nothing a bit of repositioning of my weight couldn’t adjust for. She gripped as well on snow and icy tarmac as she flew on Ride London. I’m starting to think I won’t bother with narrow rubber ever again! 

Lancet enjoying the snowWith so much resistance with the ice and snow lodging into my mudguards and on the road. A headwind seemingly in both directions it made for a hard ride and my blood glucose showed as much. Even keeping my meter warm in my jackets chest pocket wasn’t helping it much as it kept having temperature warnings a couple of times. Throwing more and more fuel at me wasn’t helping either. 10km in I was down to 3.2 and keeping the fuel coming it just fluctuated from 2.8 to 3.4 for the entire ride out. The return trip started out at 7.4 but soon was down into the 2’s where it stayed. It was one of those where power output dropped massively and was more a spin my way home and keep the fuel going in.  

 Now four hours later, BG’s are hovering around normal levels and all that extra fuel simply went into the void caused by the “beast”. A touch day basically, but one of those random ones where weather and external conditions throw a spanner into the well-orchestrated mechanics you normally work from. Tomorrows another day! 

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?!

RideLondon Transport Woes

I’m doing RideLondon at the end of the month, I think I’ve mentioned it around here and there. Just a few things left to sort out and those included getting me and a bike down to London and also returning back home. No problems, just a train down as per usual right? Not a chance according to the Virgin Trains website (it’s taken long enough for the site to allow bike bookings, even if they don’t really work)! Nothing on Saturday, Friday, or Thursday *sigh*.

So I ride down to the station (20 miles to the station so nothing major and a good bit of practice with the very hot weather) on Thursday and ask at the ticket office about possible places for me and a bike. Thankfully they have far better luck than the Virgin Trains website and manage to find me a ticket down on the Saturday with a bike without a problem. Getting home was much more problematic and would mean waiting till Monday to get back due to the lack of bike spaces, but in the end, he found one. After all this searching I had formed quite a queue right around the station and out the front door…oopsy!

Really I should have checked the tickets a lot more thoroughly at the station, sadly I just went through and noticed tickets and bike passes and all looked good. Once home I did notice that I only had a bike pass for getting to London, and the return bike pass hadn’t been printed ARGHH!

So back to the station and the ticket booth was closed. No staff around at all for over 30mins. Spoke to a lass who finally showed up, who said she could help but had to deal with some trains first so hung on for another 20mins till she was free.

The bike space for my return ticket had now gone! And there was now only one on the Monday to get home…at a silly hour of the night so it means I’ll be having a lovely ride home in the pitch black. Snag two, my train ticket is hours earlier than the newly acquired bike pass, and I can’t get a new train ticket for me as the ticket booth is only open until 4pm, so with work that means having to wait till Thursday ARGHH!!!

Why can’t anything ever be easy!

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.