“It’s a constant worry about if I’m too ill to work”: 43% of people with cystic fibrosis worry about the future every day

Today's report reveals:

A significant physical burden: On average, people with CF are taking 34 tablets a day, with the most reported at 150 a day. 42% of respondents also said the burden of monitoring CF health at home was high or very high. In order to stay well, many people with CF have to follow a high-calorie diet, undertake daily exercise and physiotherapy to help clear their lungs, and go for frequent health checks at their local CF centre. 

A huge mental toll, with 1 in 3 worried about their mental health every single day. The report also reveals that people with CF rate their average happiness levels as 5.6 out of 10, when the national average is 7.5. This result is 5% lower than in 2023 and significantly lower than in 2016, when people with CF rated their average happiness levels at 7.36. People with cystic fibrosis cannot meet each other in person due to the risk that they infect each other with very harmful bugs. This can be an isolating experience, when you can’t be close to people who are going through the same thing you are.

A serious financial burden, over and above general cost of living pressures. For a typical family, the added financial cost of having cystic fibrosis is nearly £6800 a year. This is made up of both extra spending to keep well (heating, maintaining a high-calorie diet, attending medical appointments, home medical equipment, prescription charges) and loss of income.

For the third year in a row, the report has shown that 1 in 5 people with CF have missed a hospital appointment due to the associated cost of attending in the last year. Additionally, 39% said they were currently choosing between essentials like heating their homes and putting food on the table, and 21% of respondents had run out of food before they had money to buy more.

10% of respondents owe their energy provider over £250, with 2% owing more than £1000. People with CF need a warm, dry home to stay well, and rising costs continue to pose a risk to health. 25% of those who responded to the survey had been uncomfortably cold in the last 12 months and 52% had to go to work despite being ill because they were unable to afford to take time as sick leave.

You can read the full report here

Emily, who has cystic fibrosis, said: “Being a university student with CF has come with so many challenges. In halls, my accommodation was spotless, heated, and damp free. Student housing doesn’t have that privilege. It is very expensive, and bills aren’t often included. You can see your breath in the house, and the winters are so cold. 

“I had to have IV antibiotics twice in a month in my second year, and lots of oral antibiotics too. I was really struggling both mentally and physically. After all the improvements to my health from Kaftrio, I felt a bit invincible. But when CF comes to bite, it feels so much harder to cope with. I think it just reminds you that you are still sick, that you are not magically cured.”

You can read Emily's story here

Cystic Fibrosis Trust is now calling on the governments across the UK to implement key policy changes to ensure people with cystic fibrosis are able to live free from the limits of CF. These include:

• Equity for all - Access to free prescriptions for everyone with CF and an uplift in Statutory Sick Pay. 

• Breathing greener - We want to improve air quality for those with lung conditions, including introducing the early alert warning system to protect those with CF.

• Access to care - Secure the future of CF specialist care and address staffing recruitment and retention in CF teams.