We want to find out the true cost of living with cystic fibrosis

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For us to better understand the true cost of CF, and how we can better support the community, we've put together a short anonymous survey to get a true representation of what our community faces day-to-day.

Take the survey

We know that the cost of living with cystic fibrosis (CF) can often feel overwhelming, with the COVID-19 pandemic only adding to the financial uncertainty and hardship many in the community are facing. Research shows that poverty and social deprivation can significantly impact the physical and mental health of people with long-term health conditions, like CF.

Sadly, we have seen this increase in hardship in our community reflected in demand for our support services. Since 2015, applications for our emergency grants have increased by over 200%. In 2016, we set up a welfare advice service which provides dedicated benefits advice to people with CF, and since then we have supported over 1,000 people with Personal Independence Payment (PIP) claims alone.

In December last year, we launched a winter hardship fund, because through our emergency grant scheme, we recognised that many in the CF community were struggling to eat properly, heat their home or buy household essentials.

Take the surveyquestion illustration

For us to better understand the true cost of CF, and how we can better support the community, we’ve put together a short anonymous survey to get a true representation of what our community faces day-to-day.

This short survey has been designed to put data and testimony behind the issues that we know the community face; we hope to capture a snapshot of the costs that our community know all too well.

These early insights will be invaluable and help us set the big picture groundwork for future work and enable us to make real and lasting change in the future.

Your answers and what you tell us will inform our work going forward – so your input is invaluable. Over the coming months we will publish the results to shine a light on issues and give people an opportunity to tell their story.

Some of the questions might be hard hitting or bring up complicated emotions, and we would encourage those who need advice relating to topics raised within the survey to contact our Helpline or get in touch with us on social media.

If you wish to share your experiences with us and help shape our work, please take part in our survey and share to help us reach as many people in the CF community as possible.

Take part now


Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to. 

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Caitlin

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Help others understand what everyday life is like for people with CF. Remember to tag us @cftrustuk and use the hashtag #CFTruths to join the conversation.

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