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Cystic Fibrosis Trust statement ahead of the UK Government’s Emergency Budget

News -

Ahead of the emergency budget this week, we have written to the new Chancellor, Kwasi Kwarteng, asking the Government to take urgent steps to address the needs of people with cystic fibrosis this winter.

People with CF are facing steep rises in their cost of living, with our recent Cost of CF report painting a shocking picture. It revealed that 87% of people with CF are worried about the cost of living, and 35% worry about money daily.

There are lots of things that come with having CF, but the financial burden was one that I never saw coming. I thought just having to live with the condition was the worst that could be thrown at me. But how wrong was I?

Kate, 36, from Manchester

What we’re calling for:

  • An end to Personal Independence Payment (PIP) re-assessments for people with long-term conditions like CF. Continuing repeat assessments where a person’s health is unlikely to change is costly, unnecessary and something our community tells us is a significant source of anxiety.
  • A new hospital travel card scheme, which will provide subsidised quick, hygienic, and environmentally friendly travel to ensure that no person with CF misses an essential hospital appointment due to the cost.
  • A review of the prescription charges exemption list so that all people in England with cystic fibrosis are exempt from prescription charges. CF is now one of the few chronic, life-shortening conditions where adults incur an additional cost burden to live longer.
  • Finally, we want the Government to address fuel bills to help those in desperate need. We know that nearly a third of people with CF are having to make difficult decision between heating and eating. And we need urgent action to prevent further hardship for people with cystic fibrosis this winter.

You can read our full Cost of CF report 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.

Kate's experience may bring up complicated emotions, and we would encourage those who need advice relating to topics raised within this story to contact our Helpline or get in touch with us on social media.

You can also find out more about the financial support we offer here.

Get financial support

Related content

Cost of CF: Chantelle’s story

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As the cost of living continues to rise, people with life-limiting conditions like cystic fibrosis (CF) are among the hardest hit. Results from our recent Cost of CF report painted a shocking picture, with one in three CF families revealing they had run out of food before they could afford to buy more, and one in three people with CF missing hospital appointments due to the cost. We spoke to Chantelle about the challenges she’s facing.

Tips to help you deal with the rising cost of living

Blog -

We know that the rising cost of living and the financial burden of living with a life-long condition is a worry for many people in the CF community. This CF Week, we're #liftingthelimits, so everyone can access the support they need.

Here, Sangeeta and Nicky from our Welfare team share their top tips to help the community cope with the increased cost of living. If you would like to talk things through, please get in touch with our Helpline, seek advice locally or speak to your CF team.