We’re calling on Government to implement policies so people with CF can live a life unlimited

Blog - 14/06/2023

Last week, we published our ‘Your life and CF report’, sharing the findings from our UK-wide survey, which has allowed us to gather crucial data and first-hand accounts of life with CF.

We’re here for everyone affected by CF, and we campaign on what matters to you. Your responses to our survey have been invaluable and help us to make real and lasting change.

We're calling on the Government to implement policies that will help address the issues you have identified and ensure people with cystic fibrosis can live a life unlimited by their condition.

No one should pay for medicines

Everyone with CF should have access to free prescriptions regardless of where they live in the UK. The English Government must review the prescription charge exemption list and acknowledge the financial challenges faced by people with long-term conditions like CF.
Fair benefits system

The Personal Independence Payments (PIP) system repeatedly fails people with cystic fibrosis. There are too few occasions where the right PIP assessment decision is made the first time. Assessments are often conducted by people with little to no experience in cystic fibrosis.
Affordable travel

Those with a life-long medical condition need access to free hospital parking. Implementing a “hospital travel card” system for people with CF would provide subsidised access to green (through the use of electric vehicles), clean and quick direct access to hospitals on an ad-hoc basis.
Affordable energy

Those in greatest need, including those with CF, need warm homes to stay healthy. By introducing an energy social tariff for gas and electricity, it would ensure our community doesn’t have to rely on future governments for temporary cost-of-living support.
Support at work

Statutory Sick Pay (SSP) represents a safety net for those with long-term conditions. However, it is in dire need of reform. In its current state, it risks plunging those who rely on it into debt and poverty.

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.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.