Finding strength in community: peer support at Cystic Fibrosis Trust

From what people tell us when they contact us for support, feeling lonely is not just down to cross-infection policies keeping people with CF apart to keep them safe. There are many other things that can make living with CF feel lonely at times. 

CF is a condition where a lot of treatment happens at home, making it invisible to other people. People with CF might look healthy, even when they’re not feeling well. Some parts of CF, like tummy troubles or mental health, can be hard to talk about. To help with this, we bring the CF community together. We do this in a range of ways to suit different people and the different things they might want to talk about, share and support each other with. 

Supporting parents of children with CF

Our CF Connect service matches parents of children with CF with trained volunteers. These volunteers have been through similar experiences and are there to listen and support. Many parents who use this service have babies who were recently diagnosed. The volunteers don’t give guidance or advice; they provide a safe space to chat and get support. 

You can get support from this service by getting in touch with our Helpline. The Helpline team are also on hand to provide support and a listening ear to anyone who is feeling alone with CF and needs someone to talk to. 

“Because of the rarity and nature of this condition, we can't meet up, we may be in different areas/regions so this service is so important. Because I can't just wander down the road and join my local CF support group so it's hugely isolating. This service gives a link of support, hope and understanding from another person who knows what it's like to walk in your shoes and feel all the emotions that you’re feeling now.” Parent supported by CF Connect volunteer

While one-to-one support is just what some people need, others want group support. We’ve been running pilot sessions through our Strong Beginnings programme which provide small group online sessions for parents.  Sometimes this is with other parents with children of a similar age, or sometimes with parents who are facing similar journeys, like caring for children with CF who are neurodivergent. These sessions have gone really well. and we hope to do more in the future. 

“Our experience with CF was incredibly isolating… it was a very lonely place to be. Then we joined the call and everything changed. By the end of that session everyone was in tears – it was the first time we had found true comfort in sharing with people who genuinely understood.” Parent who joined a Strong Beginnings session

Connecting children and young people

Our youth programme offers fun and safe online activities for children and young people affected by CF. From crafts and cookery as part of our Building Brighter Futures programme, to getting involved in shaping the work of the Trust through our Youth Advisory Group. We are proud that 70% of these sessions are led by adults with CF.   

“Hearing others talk about their CF life, even just showing their pot of Creon and saying “I have an Aerobika too” or describing their physio routine has had a really positive impact. My child sometimes says, “I’m the ONLY person that has CF” and just hearing others talk openly is so helpful.” Parent of a child who attended an online event

Supporting each other with work 

We also bring adults with CF together to talk about jobs and careers through our Work Forwards employment programme, funded by National Lottery Community Fund. We offer online sessions on work, careers and jobs which are often led by people from the CF community. In our next session, Maggie, a chef with CF, will lead an online cooking class to show how to make a healthy lunch for work. This session is on 26 June at 6.30pm; spaces are limited so book your place now. 

An online CF community

Our online community forum provides a more private space to get – and give – support to others affected by CF.  We worked with the CF community to develop the online community to make sure it is a safe and welcoming space. It’s a private place away from social media to share support and talk about things that others might not understand 

Coming together to support the Trust

As well as helping the CF community get together to support each other, we also make sure the CF community can come together to support the Trust, by joining events, raising money, and helping guide our work.

Whether it’s supporting a stranger via our online community, or sharing experiences with others with CF to shape the work the Trust does, many of us will find strength in community. We are here to provide ways for the CF community to connect and feel less lonely. 

Find out about all the ways we can support people with CF