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).