In this episode of Up Up and Away, Dom Burch is joined by Terri Quigley — a Project Manager at NHS Cheshire and Merseyside, an award-winning Participation & Engagement Coordinator, and a passionate advocate for respiratory health and lived-experience-led change.
Terri brings a uniquely powerful perspective. She works inside the system, helping shape services for children and young people — but she’s also a parent, and she and her teenage son Ethan both live with severe asthma. That combination of professional insight and lived experience makes this a conversation that’s as practical as it is emotional.
Terri shares why the Digital Health Passport has been a genuine “game-changer” for their family — not just in improving asthma control, but in helping Ethan build confidence, reduce anxiety, and take ownership of his condition as he becomes more independent. One of the standout moments is Terri’s story of Ethan going on his Duke of Edinburgh expedition, managing asthma, allergies and a complex routine of medications — including inhalers and biologic injections — and how the app helped make that possible in a way that felt safe for both of them.
The conversation also explores the bigger system challenge: what meaningful participation really looks like, why “sending out a survey” isn’t enough, and why lived experience needs to be present in the board-level meetings where decisions are made. Terri describes the moment that spurred her into action — seeing a meme of a board meeting about young women’s health made up almost entirely of older white men — and how that pushed her to help create a clearer framework for involvement, including simple “crib sheets” that make participation less intimidating and more effective.
Terri also speaks candidly about asthma anxiety, why many children avoid PE and physical activity, and how fear can sometimes be unintentionally passed down from parents who simply don’t feel confident about what to do when symptoms flare.
And towards the end, Terri leaves listeners with a message that’s hard to ignore: asthma deaths are overwhelmingly preventable — yet families are still being let down. Her call is simple and urgent: if we empower patients and carers with better understanding, better tools, and better support, we can prevent avoidable A&E visits — and save lives.
Terri also highlights the campaign “Too much blue, get a review” — a simple but vital reminder that if you’re using your blue reliever inhaler more than three times a week when you’re well, it’s time to speak to a healthcare professional.
Links & resources
- Too much blue, get a review — if you’re using your blue reliever inhaler more than three times a week when you’re well, it’s time to speak to a healthcare professional.
- Learn more about the Digital Health Passport from Tiny Medical Apps.