1 in 3 people with cystic fibrosis miss critical hospital appointments due to cost, says Cystic Fibrosis Trust

News -

A third of people with cystic fibrosis have missed vital hospital appointments due to how much it costs them, reveals a new Cost of Cystic Fibrosis report published today by Cystic Fibrosis Trust

In spring 2022, the Trust launched a UK-wide survey to collect data and testimony on the cost of living with cystic fibrosis. Over 1,100 of you shared your experiences – and we couldn’t be more grateful for your support.

What we found out

The results from the survey paint 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.

These appointments are essential to ensure that people with CF can stay as healthy as possible and that any problems, including harmful infections, are picked up before they cause permanent damage. 

We also found that rising living costs – as well as the additional costs of having CF - are causing 30 per cent to choose between eating and heating, with people running out of food before they have money to buy more.  

On top of rising travel costs to attend hospital appointments, people with CF also face higher energy and food bills due to both the additional costs needed to maintain a high calorie diet, as well as using more energy taking care of themselves. This includes keeping their homes warm to stave off lung infections, running additional washing machine cycles to wash clothes which need washing more often, needing an extra fridge to store sterile medications, and running medical equipment like ventilators. 

This month my daughter needed her first set of intravenous antibiotics at Alder Hey hospital, Liverpool. We travelled up from Wales, paid the tolls each way into Liverpool and stayed in a hotel for 2 nights, as only me or my husband can stay at the hospital and taking it in turns to see our daughter. It’s an unexpected cost - around £200 overall - and something that we didn’t budget for.

- Melissa, from Wales, whose 9-year-old daughter has CF

I am very concerned about the huge cost increases in every aspect of our lives and that affects my health. Our fuel bill has more than doubled in less than a year. Because I have cystic fibrosis, I feel the cold a lot and regularly use a blanket and hot water bottle to keep warm rather than put the heating on. It is important for good mental health to try and actually live as opposed to simply existing.

- Gill, age 62, from Warwickshire, who has CF

Our data also revealed: 

  • 87% are worried about the cost of living  
  • 69% felt they have less money compared to those around them, due to either their own or their child’s cystic fibrosis  
  • 80% felt their cystic fibrosis or caring responsibilities had an impact on their employment 
  • 1 in 3 had to prioritise one basic essential over another 

It’s shocking that 1 in 3 people can’t attend vital hospital appointments due to the cost – whether that’s travel, parking costs or that they cannot afford to take the time off work.

These hospital appointments aren’t a luxury – they are an essential part of ensuring people with cystic fibrosis can lead long and fulfilling lives.

Living with cystic fibrosis already comes with extra costs and the added burden of the cost-of-living crisis is creating even further financial pressures for people with cystic fibrosis and their families.

We’re calling on the Government and NHS to take urgent action and do more to help support people with cystic fibrosis who are struggling, and will face more financial difficulties as bills continue to rise.”

David Ramsden, CEO of Cystic Fibrosis Trust

What we're calling for

In response to the findings, we are calling for five key changes for people with cystic fibrosis:

  • A guarantee that uprating of benefits will reflect current inflation, rather than the previous year’s September consumer price index (CPI) 
  • End unnecessary benefit reassessments and introduce a minimum PIP award length (two years+) for people living with a lifelong condition like cystic fibrosis 
  • Free hospital parking, and a hospital travel card scheme which would provide subsidised travel for those living with a lifelong condition  
  • Ensure everybody with cystic fibrosis has access to free prescriptions regardless of where they live in the UK, and to order a review the prescription charge exemption list
  • Abolish VAT on energy bills. 

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.

Your donations help us fund ground-breaking research, make sure that everyone has access to life-saving medicines and high-quality clinical care, and reach those with CF and their families that are most in need. Donate today to help everyone with CF live a life unlimited.

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