It can be tough for cystic fibrosis patients to fit hospital appointments into their everyday life. Time and money spent on travel, the inconvenience of taking time off work, and all the while the possibility of being admitted as an inpatient is looming over their heads.
That’s why, with our partners at the CF Trust, the US CF Foundation, Microsoft, Magic Bullet and InnovateUK, we have been running Project Breathe for the past 12 months.
Project Breathe aims to give people more control over their health and wellbeing. Patients are given equipment to monitor their weight, lung function, oxygen saturation and other key indicators each day through the Project Breathe app. This data is then compiled and will hopefully begin to recognise patterns, allowing for early detection and treatment of clinical deteriorations. It also aims to provide immediate feedback about the impact of starting or stopping particular therapies.
Project Breathe has already reduced the number of times cystic fibrosis patients need to come to hospital for a check-up – only doing so when a decline in health is spotted – freeing up more time for them to do what they love.
Name, age, location?
Hi my name is Kate Eveling, I’m 25 years old, and I live in Milton Keynes.
There are just over 80 people currently taking part in Project Breathe. What does it mean to be one of them?
I feel very grateful to be a part of Project Breathe and very excited to see where it leads!
When were you recruited to the study?
I was asked at the end of July to be a part of it and I was on board before the research nurse had finished speaking.
What difference has it made to your life?
Aside from keeping an eye on my health, one of the best parts of this project for me is the reassurance it gives. For example when I’m not feeling too well, I can check to see if my lung function has dipped, or if I have a temperature or if my SATS are stable etc. Sometimes I can get quite nervous about going to clinic because I’m worried what my lung function will be. But being able to monitor it from home, I feel really secure and reassured going into a clinic appointment. Although this only applies when things are stable!
I had my first virtual clinic the other day over the phone with my specialist CF nurse. She went through and explained everything very clearly, having already looked through my notes and my data from the Project Breathe app. It was very much like a normal clinic except it was done over the phone and only lasted about 30 minutes instead of three hours. I was so grateful I didn’t need to take time out of work too, especially because I’m a self-employed dog walker so any time off means I won’t get paid (it can be a nightmare when I’m not well).
How does it feel not only to be helping yourself, but also acting as a trailblazer for other CF patients in the future?
I’ve always wanted to help the future of cystic fibrosis in any way I can, so being a part of this project actually means a lot to me and if it’ll help out others in the future, then I feel great to be giving back to the community in some kind of way.
Anything else you want to add?
I will say it’s a bit difficult to remember to monitor myself every single day on top of everything else I need to do with CF, especially when I’m feeling well. And something that I struggle to do is the lung function because it’s not exactly a comfortable test to do. However one of the purposes of Project Breathe is to reduce the amount of CF clinics I need to go to if I’m feeling okay. I truly believe that this is a step forward into the future of cystic fibrosis clinics and I’m very grateful to be taking part.