Within one week of launching a new appeal, Royal Brompton & Harefield Hospitals Charity has seen an incredible response as a result of their launch event, and an even larger reaction online and on social media, reaching 8,500 people

At the beginning of February this year, the Charity launched an innovative new appeal to better the lives of cystic fibrosis patients.

The condition, for which thousands of patients receive treatment at Royal Brompton Hospital each year, is a genetic disease that affects 10,400 people in UK. It affects the lungs, digestive system and other organs, causing a range of challenging symptoms.

The journey into hospital can prove hard for these patients, and in some cases make symptoms temporarily worse. The Charity is raising £500,000 to create a digital platform that will allow cystic fibrosis patients to have virtual consultations with their consultants at home.

The appeal was launched at an event at Royal Brompton Hospital attended by donors, staff and relatives of patients with cystic fibrosis. Representatives of NuvoAir, Thriva and Babylon – the companies responsible for creating the home-use kit and digital platform were also present.

The cystic fibrosis team outlined the new platform to visitors, explaining how virtual appointments would work and the impact of patients being able to monitor their health with their own toolkits.

Attendees were invited to try out the equipment themselves, including the chance to try a spirometer, a tool used by the CF team. The kit allows them to monitor lung conditions by measuring how much air a patient can breathe out in one forced breath.

Alex, a cystic fibrosis patient at Royal Brompton hospital spoke at the event, describing his experiences with self-management. Having bought his own self-management equipment last year, Alex could give a practical demonstration of the impact of the new appeal to attendees.

A video posted on social media ahead of the event has received almost 6,000 views since the launch.

In the video, cystic fibrosis patient Jo Acharya shares her personal experience with the condition, and how the journey into hospital takes its toll on her health.

After making the four-hour round trip to Royal Brompton Hospital 18 times in 2017, Jo was keen on stressing the importance and impact of the self-management toolkit. Jo said: “Ironically, when I’m less well, I have to come more often, and each time it’s more exhausting than normal, as I have less energy – the less well I am, the more it affects me.”

“The idea of having the opportunity to do virtual appointments would make it a much easier experience, and I wouldn’t have to spend the next day recovering from it. Monitoring my own health at home using the toolkit, especially my lung function, would allow me to feel more empowered over my health.”