Cost of living: We won't stop

Over the last year many people within the CF community have been sharing their stories of the cost of living with cystic fibrosis (CF). At the Trust, we launched a hub on our website to provide information and support at this difficult time and we have been able to continue to provide vital grants to those in most need, thanks to our incredible supporters.

We have always known that having CF, like many other long-term health conditions means extra costs and lost income. Now, research from University of Bristol in partnership with Cystic Fibrosis Trust, provides evidence to quantify this.

Thanks to the insights from people with CF and their families given in focus groups, in-depth one to one interviews and an online survey, the researchers have been able to measure the additional spending that is required and the impact on household income caused by living with CF. This is critical information and I would like to thank everyone who took part and shared their experience.

The key findings of the University of Bristol’s research are that:

• Families with CF are more likely to be struggling with their finances than the public – 24% of adults with CF and 35% of parents of children with CF described meeting their bills each month as a ‘constant struggle’, compared to 17% of UK households overall.
• Food and rising energy bills were the biggest financial concern for people with CF and their families – both are essential to the health and quality of life of people with CF.
• For the average family the combined impact of extra spending (heating, expensive dietary needs, attending medical appointments, home medical equipment, prescription charges) and loss of income means that they are thousands of pounds worse off than comparable families.

These findings and the stories from people across the CF Community over recent months emphasise the need for urgent action from politicians and policy makers to ensure:

• Benefits continue to rise in line with the cost of living and there is an end to unnecessary re-assessments for people with long term conditions
• No one with cystic fibrosis has to pay prescription charges
• An end to VAT on energy bills 
• Hospitals provide parking and food that are affordable. 

We will continue to raise awareness of the financial challenges facing people with CF, campaign for greater support from government and strengthen the direct support that we provide to those in our community who need it most.

The CF community is a very special group of people who are working together to achieve our vision of a life unlimited. We are so grateful for your ongoing support at this challenging time so that we can be there for everyone with CF. We couldn’t do it without you - thank you.

Read the full report

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.