Sharing the load through tech – one family’s experience of the artificial pancreas on the NHS

Sara and Tim Giles’s son, Leon, was diagnosed with type 1 diabetes when he was just two years old. With Leon now aged five, and sisters Eleanor (11) and Naomi (nine), Sara and Tim began using the artificial pancreas system in February 2020 after taking part in a clinical trial. They now access CamAPS FX through the NHS.

Mum Sara says: “There were a lot of challenges with having a child under five with type 1. Now Leon’s a little older it’s a bit easier, but he’s still not able to monitor it himself. Since his diagnosis, we’ve been on a number of different pumps and sensors which didn’t really work out at all. Then we were able to join the study which was amazing and we’ve been using the CamAPS app since then.”

Using the app has meant that multiple people can access Leon’s data at any time, meaning that Leon’s care is not in the hands of just one person. This aspect of the app gives Sara and Tim reassurance and support, as well as a greater sense of freedom.

Sara says: “I like the fact that enough people’s eyes can be on it. Tim is definitely in charge of all the tech and getting Leon’s insulin, but if he’s physically not with Leon, Tim can still monitor what’s going on. We can talk on the phone and he can give suggestions about what needs doing. So that aspect of technology is really incredible.

“I have had some serious health issues that have prevented me from always being present and my parents have helped take care of the family. The app means that we’ve got a whole gang of people around us who can see Leon’s data and know what to do. Being able to involve people remotely in Leon’s care is an absolute game changer.”

Minimising the impact of monitoring at night

For Tim, the app has made monitoring Leon during the night a lot easier. He says: “The nights were always a big worry for both of us, with not being able to know what’s going on without getting up and doing a finger prick check, which I used to do during the night. So that’s one of the big things that’s changed with the app.”

Sara agrees that the app has reduced the impact of monitoring Leon’s blood glucose levels at night: “Tim still checks Leon’s levels through the night – we’re not able to all go to sleep and forget about it. But Tim can now check by looking at the phone app rather than going up and doing a blood test.”

An improvement in clinical outcomes

Both Tim and Sara have seen an improvement in Leon’s clinical outcomes. Tim says that Leon’s HbA1c has been “fantastic” since starting on the system.

Tim and Sara also feel that using the CamAPS FX has helped identify problems before they arise. Tim says: “A couple of months before we started the CamAPS trial, he was hospitalised because his blood glucose just went really high. It was to do with a cannula failure. Then the replacement cannula failed as well so we didn’t realise that for a while. I think that if we’d been on the app then that could’ve been avoided.”

Facing challenges and managing expectations

While the app has improved the management of Leon’s type 1 diabetes for Sara and Tim, the couple are pleased with how their expectations of what the system would do for Leon’s type 1 diabetes were managed by the clinical trial team.

Sara says: “Throughout the trial, every step was made very clear to us. We knew that it wasn’t going to fix everything, but it was going to help us manage the condition better. I would say that that goal – of better management – is being achieved.

She continues: “With the amount of tech that’s needed for the closed loop system, the more things there are that can go wrong. Sometimes troubleshooting things can be a bit overwhelming, but during the trial the team were on hand 24/7 and now we get support from the team at Royal London Hospital.”

Despite occasional issues, Tim and Sara are clear they wouldn’t go back.

Sarah says: “If we had the option to go back in time I would 100% choose the same path, there’s no doubt about that for me. I feel very very very grateful for the opportunity to be on the app and I definitely would not want to go back.”

Most importantly, the app has meant that type 1 diabetes doesn’t stop Leon getting the most from school and home life.

As Tim says: “He’s a very happy, healthy boy and that’s the main thing.”