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!