Reports

Ahead of the conclusion of the government's review of Personal Independence Payments (PIP), led by Sir Stephen Timms, our latest report shows the extent the system doesn’t work for people with CF. 

The report shows:

• PIP applications are often not given the right decision

• PIP forms are complicated to fill out, and don’t allow people with CF to accurately and fully describe their condition

• Waiting for PIP decisions is negatively impacting the physical and mental health of people with CF

Read our full report

 Read a shorter version of the report

Our fourth Your Life and CF report shows the reality of life with cystic fibrosis in 2025 – long daily treatment routines, rising living costs and growing concerns about mental health. We’re calling on the Government to act now and make meaningful change. 

Our 2024 Your Life and CF report shows the huge physical, mental, and financial burden people affected by cystic fibrosis face, where 43% worry about their future every day. 

The report also revealed: 

• 1 in 3 people with CF worried about their mental health every single day.
• 39% of people surveyed are currently choosing between essentials like heating their homes and putting food on the table
• On average, people with CF are taking 34 tablets a day

We are 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. 

Read the full report

The report revealed:

• 87% of people affected by CF are worried about the cost of living
• 1 in 5 are running out of food before they have money to buy more
• 7% needed to use a food bank in the last year – over double the UK average for the last year (3%).

Read the full report

Living with CF comes with significant and never-ending costs. Research from the University of Bristol, supported by Cystic Fibrosis Trust, showed that the average family incurs over £6,500 in combined additional costs and lost income as a result of the condition. 

Read the full report

The report revealed: 

• 87% are worried about the cost of living
• 69% felt they have less money compared to those around them, due to either their own or their child’s cystic fibrosis
• 80% felt their cystic fibrosis or caring responsibilities had an impact on their employment
• 1 in 3 had to prioritise one basic essential over another. 

Read the full report