1 in 3 people with cystic fibrosis miss critical hospital appointments due to cost

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 (Wednesday).

Over 1000 people** with cystic fibrosis and their families took part in the first of its kind survey for people with the lifelong genetic condition – sharing their story of the financial impact of having cystic fibrosis, which makes daily activities like walking, sleeping and eating a daily challenge.

Appointments with cystic fibrosis specialist teams are essential to ensure that people with the condition can stay as healthy as possible and that any problems including harmful infections are picked up before they cause permanent damage.

The report also found that rising living costs – as well as the additional costs of having cystic fibrosis – 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, those with the condition 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.

Melissa from Wales has a 9-year-old daughter with cystic fibrosis and who has been impacted by the financial costs of hospital appointments, said: “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.”

Gill, age 62 from Warwickshire who has cystic fibrosis, said: “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.”

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

 David Ramsden, Chief Executive of Cystic Fibrosis Trust, said: “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.”

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.