Award-winning TRACHEShub App launches to support tracheostomy care across Wales
On Sunday 11th May, children with tracheostomies and their families from across South Wales came together for an afternoon of face painting, balloon modelling and the launch of the new TRACHEShub app designed to improve tracheostomy care outside of hospital.
On Friday 23rd May the team behind the TRACHES toolkit received a national Advancing Healthcare Award for Best Collaboration across Clinical, Academia and Industry. The award was presented to Cardiff and Vale UHB Consultant Therapist in Critical Care Paul Twose and Grace Moore from the Institute of Clinical Science and Technology at a ceremony in London.
Currently around 40 children in South Wales live with a tracheostomy - a surgical procedure where an opening is made in the neck to insert a tube into the windpipe, allowing them to breathe.
Julie Bickel, Paediatric ENT Nurse Specialist at Noah’s Ark Children’s Hospital explained: “It could be due to a floppy airway, or a congenital condition where the child has a very small airway. Some children don't have an upper airway at all, so their lifeline is the hole in their neck.”
The afternoon, with refreshments, toys, a magician who created extravagant balloon characters and face painting was Julie’s idea. She said: “What we’ve found is a lot of these families can feel quite isolated. They don't see many families going through the same thing, and they gain so much out of interacting with each other.”
One parent attending echoed the feeling: “You can feel like you’re the only ones in the whole world, so it’s good to have this and see you’re not alone.”
Alongside the entertainment, Julie and Cardiff and Vale UHB Consultant Therapist Paul Twose, introduced the new app, developed with the Institute of Clinical Science and Technology. Designed for use across Wales, the app supports tracheostomy care for both adults and children.
“This is a national initiative,” Paul explained. “We want to improve tracheostomy care by placing patients and families at the centre of care. It's all about safer care, reducing complications and helping you support your children to live the lives they want to live.”
Julie demonstrated the app’s features which include educational videos, a central place to log hospital and GP visits, and a monthly tracker to record tube changes, monitor secretions, granulation, wellbeing and more. The app also supports information-sharing with healthcare professionals, and all those involved in the child’s care, helping to ensure a coordinated, informed approach.
“You've got your own little medical record tucked away in a nice little app,” said Julie. “It’s really helpful in spotting patterns, as well as when you need to speak to somebody about your child's health or medication.”
The TRACHEShub app is free to download now from the Apple Store or Google Play.