Life with CF in 2025: our latest report highlights challenges in mental health, cost of living, and access to care

People with cystic fibrosis (CF) are spending an average of almost four hours every day on essential treatments, with many struggling to balance their health needs with financial pressures. 

These are the conclusions of our latest Your Life and CF report, based on insights from over 1,000 people affected by CF. The findings show the realities of living with CF today – and highlight that meaningful long-term solutions are needed from governments across the UK. 

We’d like to thank everyone who took part in and shared this year’s survey. Thanks to you, we’re able to use our findings to continue to lobby the Government and campaign for long-lasting and meaningful change. 

What we found

• CF remains a lifelong, multisystem condition that requires heavy daily treatment, averaging almost four hours a day, and regular specialist care. 

• Mental health and fatigue are top worries; 70% felt lonely at least sometimes, and 90% worry about the future. 

• 29% identify as neurodiverse, and 65% of those say it affects their CF care, highlighting the need for tailored support. 

• Young respondents show resilience but report worries about health, missing out, and a lack of understanding of CF in school. 

What we’re calling for

People with CF deserve to live a life unlimited by their condition. We’re calling on the Government to deliver long-term solutions in four key areas: 

Specialist care and support

• Access to CF-specific psychological and social support: The Government must ensure CF teams are resourced appropriately to ensure everyone with CF is able to access the CF specific psychological and social care they need. 

• Training and keeping CF specialists: The Government must swiftly implement a workforce strategy to tackle recruitment and retention issues plaguing specialist CF teams. 

• Enhanced social prescribing: The Government should introduce an enhanced social prescribing system, a vital component of Universal Personalised Care. 

Financial security

• Timms review of Personal Independence Payment (PIP): The Government must ensure any changes implemented from the upcoming Timms review into PIP are co-produced with disabled people and in the best interests of the CF community. 

• A new guarantee on benefits: The Government must uprate benefits more frequently. Timely and inflation- accurate increases are vital to maintain the spending power of essential disability benefits. 

• Reform of Statutory Sick Pay (SSP): The Government must re-evaluate the current level of SSP, which is not enough to cover the increased cost of living, to be in line with a living wage. 

Healthcare costs and access

• Free prescriptions for all: The Government must review the prescription charges exemption list. Everyone with CF should have access to free prescriptions regardless of where they live in the UK. 

• Free hospital parking: The Government must ensure that patients with lifelong conditions like CF have access to free hospital parking. 

• Hospital travel card system: The Government must implement a hospital travel card for those with CF, to provide subsidised journeys that are green (using electric vehicles), clean, and quick, giving direct access to hospitals whenever needed. 

Energy

• Social tariff for energy bills: The Government must create a social tariff for gas and electricity to ensure those in our community with the greatest need do not go without essential healthcare at home. 

• Reform of Warm Home Discount Scheme: The Government must increase the Warm Home Discount Scheme allowances and reverse to eligibility changes which have impacted those on non-means-tested benefits. 

Read the full report

We’re here to help 

If you or someone you support with CF is struggling to afford essentials or stay well, please contact our Helpline. We’ll do everything we can to help you and your family. 

Call 0300 373 1000 or 020 3795 2184, Monday–Friday 10am–4pm 
Email [email protected] 
Chat with us on Facebook, X or Instagram 
Message us on WhatsApp on 07361 582053