Unite with us as we highlight the true financial cost of living with CF in UK Parliament

Today, the Trust hosted an online briefing attended by parliamentarians across the UK to highlight a new report from University of Bristol in partnership with Cystic Fibrosis Trust which has found 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.

Parliamentary representatives were invited to hear *John, 37, from London, share his experience of CF and the impact it has on his finances. John told the parliamentarians: "Because of my CF I don’t have a choice to be on benefits, I don’t have a choice to pay for medications to stay well, and I don’t have a choice to pay for extra food for my high calorie diet. Now is the time to help people with CF during these difficult financial times."

*not his real name

During the event, David Ramsden, Chief Executive at the Trust, outlined the key findings from the new report which confirms what you have told us - that having CF brings additional costs for food, energy, equipment. We will continue to use this evidence to inform and influence decision makers to make changes.

Let’s unite to call on governments to provide more and better support to people with CF

Jim Shannon MP has secured a debate in UK parliament on the Impact of cystic fibrosis on living costs on Thursday 2 February at 1.30pm.

Please urgently contact your MP in Scotland, Wales, Northern Ireland and England to share your story and ask that they represent you and your family at the debate.   

You can get involved by:

• Getting in touch with your MP via email, sharing your story of the cost of living with CF and asking them to attend the debate on 2 February.  We have some suggested wording for your email here. 

Download email template

• Tagging your MP on social media using our downloadable graphics.  

Download social media image - square

Download social media image - wide

Download social media image - portrait

You can find your MP’s contact details here. 

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.