Diabetes technology is life-changing, but we need to be prepared when it fails - A blog by Andrew Stroud

Summary

Andrew Stroud's daughter Bia has type 1 diabetes, and in this blog, Andrew talks about his family's experiences supporting Bia to manage her diabetes. He describes the huge value of technology in improving diabetes management and reducing the mental burden of the condition on people with diabetes and their parents and carers. However, like all technology, medical devices for diabetes can fail, and Andrew highlights the need to be prepared for this situation to ensure the person with diabetes is safe while they cannot use the devices they rely on every day.

Content

My daughter Bia has been living with type 1 diabetes for 11 years. In many ways, we all have—she was only five when she was diagnosed, so it affects the whole family. To begin with, she was taking multiple daily injections of insulin—we'd take a blood sugar reading by doing a fingerprick test, which involves sticking a needle into one of her fingers to get a drop of blood out. We'd know from this whether her blood sugar level was too high or too low, and would then take the appropriate steps to get her levels back in range. At this time, Bia was on a fixed dose of insulin with each meal, but after a few months we got a new ‘smart’ blood glucose metre and started carb counting. This required us to calculate—or more usually ‘guesstimate’—the amount of carbohydrate she was about to eat, do the fingerprick test and tell the smart metre what that number was. This metre then calculated the amount of insulin we needed to give her. So far, so good—until Bia decides she doesn't want to eat the whole meal, or isn't hungry! You can't take the insulin back once it's working its magic, which can lead to dangerous drops in her blood sugar level.

As time went on, Bia went onto an insulin pump, which means she no longer takes multiple daily injections. This device is attached to her all the time and delivers a background amount of basal insulin throughout the day as well as ‘bolus’ doses when she is eating meals. The pump she currently uses is an Omnipod, which is attached and changed every three days and comes with a handheld device called a personal diabetes manager (PDM) that tells the pump how much insulin it should be delivering. She inputs information about her blood sugar levels and how much carbohydrate she plans to eat into the PDM, which then connects by Bluetooth to her pump, telling it how much insulin to give her.

When Bia first got this technology, we thought this system would be much easier to manage, and it generally is—until it goes wrong! There are a couple of examples of this. A few years ago, Bia took off her pump for a bath, then came down in her PJs for dinner. We had pasta, always a bit problematic as it is quite slow release, and a doughnut—so A LOT of carbs! We didn't understand why her blood sugar kept going up through the evening, until we found that she had forgotten to reattach the pump after her bath! So she'd had all those carbs and no insulin. This was a human error, and could be resolved by reattaching the pump and taking the insulin she had missed.

Less easy, have been the rare occasions when the tech itself has failed. And when it does, you realise just how dependent you have become on it. As well as having a pump to deliver her insulin, Bea also now uses a flash glucose monitor, the Freestyle Libre 2. This is a small sensor inserted in her arm that monitors her blood sugar levels and means she doesn’t need to do as many fingerpricks, as she can just scan the device with her phone to get her latest blood sugar reading. She then enters this into her PDM to make an insulin calculation, which is then sent to the pump. She now hardly does any fingerprick tests, and she used to be doing up to eight every day!

A few weeks ago we had a really unusual triple failure and had to change both Bia’s Libre and Omnipod because they stopped working. This is ok; it happens every now and again. But the worst thing was that the PDM failed—this is in some ways the most crucial bit of tech, as it holds all of the information about insulin ratios and time blocks, which change throughout the day. The Omnipod tech support line was very good and promised they could get a replacement to us that night (it was already midnight, so we settled for the morning), and they were good to their word.

But it meant we still had several hours trying to control her diabetes without the technology we were used to. We had to go back to the old days, doing fingerprick tests and guesstimating how much insulin to give. It was a long night that was mentally and physically exhausting for all of us. But we’ve been in the game for 11 years and with our experience we could deal with the situation safely. However, for anyone more recently diagnosed, this would have been a source of real anguish and possibly a late night trip to A&E.

It's easy to forget when you're in the tech bubble that things can go wrong, and patients are often unprepared when they do. We have huge expectations that these devices will work as they should—and given that these are life saving medical devices, they certainly should—but they don't always. Healthcare professionals and end users need to be ready for the eventuality that technology might fail, and have a contingency plan to make sure they can look after themselves or their patients safely.

All people with diabetes also need access to support to make sure they can use diabetes technology safely and access help when it fails. We're lucky to have a good on call out of hours diabetes service. We know the consultants, they know us and we would have worked it out—but that provision is not the same across the country, and this needs to be addressed.

Related reading

How safe are closed loop artificial pancreas systems?
Blog - When diabetes devices fail (8 December 2020)
Blog - Peer support makes a big difference to living with type 1 diabetes