The Trust launches new ‘Your Life and CF’ report

In spring 2023, we launched a nationwide survey to gather crucial data and first-hand accounts of life with CF, focusing on the additional financial burdens associated with cystic fibrosis. This follows on from our ‘Cost of CF’ report published in 2022.

We would like to thank the CF community who took the time to share their story with us and share our survey within their networks. Thanks to you, we’re able to use our findings to continue to lobby the Government and campaign for long-lasting and meaningful change.

The report reveals that:

• 87% of people affected by CF are worried about the cost of living, with 72% feeling like they have less money compared to those around them due to either their own or their loved one’s CF, up from 69% in 2022
• 1 in 5 are running out of food before they have money to buy more, and 1 in 3 are having to borrow money for basic essentials such as food, clothing, heating or internet.
• 7% needed to use a food bank in the last year – over double the UK average for the last year (3%).
• In the last 12 months, 1 in 5 people missed a hospital appointment due to the cost. This far outweighs the national average, where roughly 1 in 10 hospital appointments are missed.

Read the full report here

We will continue to run the survey annually, using previous years’ data as benchmarks so that we are able to monitor trends and make sure the voice of the CF community is at the heart of our policy work.

We are here for everyone affected by CF, but for meaningful change, we need long-term solutions from governments across the UK.

What we're calling for

We're calling on the Government to implement policies that we believe will help address the issues our community have identified and ensure people with cystic fibrosis can truly 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 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 a social tariff for gas and electricity, it would ensure our community don’t have to rely on future governments for temporary cost-of-living support.
• Support at work
  
  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.

We’re here to help

If you or someone you support with CF are struggling to afford basic essentials to stay well, please do contact our Helpline, and we’ll look at how we can 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, Twitter or Instagram

Message us on WhatsApp on 07361 582053

Your CF team can also support you; it’s important that you let them know if you’re finding it hard to afford the things you need to stay well.

We will continue to raise awareness of the financial challenges facing people with CF, campaign for greater support from the 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.