“Hybrid closed loop gives us confidence” – a family’s experience of life-changing tech

Coming to terms with a diagnosis

The only contact I’d had with type 1 had been a tragic one. My mother’s best friend had lived with type 1 from the 1960s and when I was just 15, she had collapsed in our home and later died in hospital that evening. I had pushed that memory away for 30 years, but it came flooding back as I saw James being treated for the same condition. Thankfully things have moved on dramatically since the mid-80s; the understanding, technology and research has made such a difference and the good news is, thanks to organisations like JDRF, things are not standing still.

Joining the hybrid closed loop trial

As we struggled with the news and the amount of information and sessions we had to undertake in that first 12 hours, we were approached by consultant Tabitha Randall, who apologised for the speed of the additional questions but as it was a trial for newly diagnosed people experiencing a ‘honeymoon period‘; she needed to know if we would sign James up to be on the hybrid closed loop (HCL) trial within the day.

When he started the trial he could have been randomised onto injections or onto the HCL. We discovered he would get the HCL, sensor, pump and phone with type 1 data algorithm and he has never known any other way of managing his type 1.

Happy and health on holiday

Three weeks later we were on a family holiday in Florida and coming to terms not only with his new condition but also this new equipment. We celebrated his thirteenth birthday in Disney’s Animal Kingdom and we had one of the best holidays we’ve ever had: the medical pass Disney gave us was little consolation but we will take every little positive we can get. More importantly he was able to eat and drink what we were able to eat and was kept happy and healthy.

James has benefitted from the HCL by having it from day one of his diagnosis. It has not been all plain-sailing, there are always frustrations and little incidents as we got used to both the condition and new way of living.

The hybrid closed loop: five years on

For us the last five years has been a huge learning curve and it’s only really been over the last 12 months I started to realise how type 1 is a mental as well as a physical pressure. Because James is so physically healthy, I forget this comes at a daily cost. Batteries on pumps fail and beep, insulin gets low and beeps. There needs to be set changes, he needs to keep on top of supplies. If we’re away from home and especially for foreign holidays you need to plan, double check and face airport security who have little awareness of medical equipment.

And just because he has the HCL doesn’t exclude him from the highs and lows which other people with type 1 face. Hot weather can sometimes floor him and we need to adjust to those moments when he just needs to stop. Letting him go off to university was as stressful for us as it was for him.

Living an independent life

But the HCL and his management keeps him nearly constantly ‘in range’ and as a consequence of that, five years on, he is happy healthy and is currently away at university and independently managing his life, including his type 1. He is involved in sport at uni and currently following his ambitions to become a TV and film producer. He plans to live overseas for a while. The HCL gives us as confidence we may not have had.

We’re so grateful to JDRF for funding this research and in April I  joined the team to run the London Marathon to raise funds for even more research.

Our family are incredibly conscious of how fortunate we have been.

We hope all children, regardless of where they are in the UK, will have a chance to have this technology and see the benefits we have seen.