From glass syringes to the artificial pancreas app: Finding the tech that works through 40 years of diabetes

I have been living with type 1 diabetes for over 40 years. I was diagnosed at a time when the latest tech was a glass and metal syringe and a test tube was used to test blood glucose levels in urine. For a time, work took me to New York and it was there that I was given access to my first blood glucose meter, although the test strips were very expensive so I needed to split them in two to make them last.

I took the view, almost from the time I was diagnosed at age 20, that I wouldn’t let my diabetes stop me from living my life to the full. I enjoy being outside and being active. I especially enjoy hiking, skiing, and running. I’ve sped down zip wires and tried caving, kayaking and paragliding. In 2017, I ran 1,000 miles over a year and although I found this tricky with my diabetes management, I completed it on Christmas Eve 2017. I suppose that all of this was my way of pushing back at those who would occasionally tell me that “you shouldn’t do that, you have diabetes!”

My family life is full too. My wife and I have two children and three grandsons, and we’ve always kept animals including dogs, cats, geese and pigs – so the fun never ends!

Finding DIY tech solutions

My diabetes management has always been a bit hit and miss. I’ve always considered myself to be lucky that my eyesight is fine and I don’t have any of the other complications that come too regularly to people with type 1 diabetes.

However, whenever I had a clinic appointment my HbA1c wasn’t great and I was struggling to work out what to do to improve it. In August 2018, I met the NICE criteria for flash glucose monitoring and I quickly learned where the issues with my diabetes management lay.

I recently retired as a Semiconductor Design Engineer working on circuits to support communications systems. So, I brought the skills I used in my career to assist in the management of my diabetes and I decided to convert my flash glucose monitor into a continuous glucose monitor (CGM) and then ‘loop’ it with my insulin pump. After a few weeks, I was up and running with my first DIY artificial pancreas system.

Diabetes and DIY tech fatigue

I quickly began to see the benefits of looping. My HbA1c improved, as did my time in range. I used my DIY artificial pancreas system for about two and a half years, during which time I made several updates. It became clear that although I could get some impressive results with the system, the mental load of just keeping on top of it was beginning to wear me down.

Somehow, my body seemed to have changed in retirement, meaning that I was now regularly having hypos followed by spiking blood glucose. I experienced a number of nasty hypos while out running, one of which was very frightening. I wasn’t coping well with all of the changes to my diabetes care and after over 40 years with diabetes I was beginning to feel I’d had enough.

I suppose, as much as anything, I was suffering from information overload, as well as stress from the drive to always have my blood glucose well managed so that I didn’t experience any complications. Even though I had what seemed to be the ultimate in a diabetes control system, it was becoming overwhelming.

Accessing the artificial pancreas app on the NHS

Around this time, I met the criteria to change sensors and soon after this my clinic became an early adopter of CamAPS FX and I was offered access to the system under the NHS. Within days of starting the CamAPS FX system I began to notice improvements in my diabetes. Although it wasn’t perfect it was much better than my DIY system, even in the initial three weeks where I was still learning to use the technology. I also began to notice my mood improving too.

After my first week with CamAPS FX my time in range was already better than I had managed to achieve (with a lot of effort) with my DIY version. Things have continued to improve and I’m now spending much less time worrying about my diabetes and just getting on with my life again.

The regular lows have disappeared as have the deep hypos and spikes. The CGM is very accurate (when I use a blood glucose meter to calibrate it) and so my confidence in the system grows daily. Sure, I still have much to learn about how to get the best out of CamAPS FX but its out-of-the-box experience is exceptionally impressive. I spend hardly any time interacting with the system other than at mealtimes or telling it I’m heading out to exercise.

Data is uploaded to Diasend and is available to my clinical team for review. System updates are straightforward too, you update them in much the same way that you would update any app on a mobile device. When I compare how I used to update my DIY artificial pancreas system I find that CamAPS FX updates are a bit of a non-event!

There is not much I miss about my DIY system other than being able to see my blood glucose readings on my watch, especially while out exercising or driving. However, this might be something the CamAPS can do in the future, as well as running on Apple’s iPhone.

So am I happy with CamAPS FX? Absolutely yes. Wherever their development goes next, I hope to continue to share the journey with them.