Getting Young People Heard

Today is International Youth Day, a United Nations initiative that raises awareness of important issues affecting young people. The Cystic Fibrosis Trust is proud to support this important programme, and Dr Erika Kennington, Head of Research at the Trust, would like to tell you about some of the work the Trust has been doing this year to engage with young people living with cystic fibrosis, including recently on our social media channels.

Young people form an important and sizable section of our community, and yet as a group it is one we don’t hear from very often. In partnership with the Association of Young People’s Health (AYPH), we have been inviting young people to share their experiences of living with cystic fibrosis, the challenges it brings and the impact it has on their lives.

We carried out a series of interviews via video chat and set up a Facebook group to follow up as well as opened up the conversation via Twitter, to make it as easy as possible for people to share their stories and experiences.

Thank you to everyone who took part, and told us about what it means to be a young person living with cystic fibrosis today. Your input provided the basis for a small booklet of messages we are currently putting together, which young people can use as a resource to educate, inform and engage with key groups such as teachers and clinical staff..

For example, one of the things that came up was this message, for staff at CF centres: “Take the time to explain important things to us – like fertility, segregation of patients with CF and transitioning to adult services.”

There is also advice to take and pass on to other young people with cystic fibrosis, such as: “Although it feels boring and difficult sometimes, taking medication and doing physio is the best way to manage your illness.”

And of course, there are tips for parents: “Be willing to let go and let us take control when we are ready – encourage our independence so we are comfortable by the time we have to be in charge of our own care.”

We are very excited about publishing this booklet, and we look forward supporting these onwards conversations.

You can find out more about what it’s like to be a young person with cystic fibrosis in ‘...the rest is up to me’, a video featuring teenagers with cystic fibrosis and read the conservation on Twitter we had in July with the hashtag #CFTyp.