Patients and families speak out about the rising costs of living with Cystic Fibrosis

As the cost of living continues to soar, those living with complex medical conditions are among the hardest hit.

Aileen Spain from Balsall Common in Birmingham takes care of her 12-year-old son, Logan, who has Cystic Fibrosis (CF).

On top of rising travel costs to attend essential, frequent hospital appointments, those 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 to take care of themselves.

Costs include keeping their homes warm to prevent lung infections, needing an extra fridge to store sterile medications and running vital medical equipment such as ventilators.

"Everything has gone up in price at the moment. So fuel, heating, energy and our grocery shopping", says Aileen.

"With Logan, we need to make sure that he's not underweight, he has extra snacks, he has higher calorie food, bigger portions, we use a lot of cheese and full cream milk for him".

"He has regular appointments at the hospital, so that involves driving there, parking", she explains, "It's always a concern that will things get worse, will we continue to get this increase in expenses?"

Aileen says the rising cost of living is a constant worry. Credit: ITV News Central

Aileen's family isn't alone, a report released today (Wednesday 22 June) by the Cystic Fibrosis Trust revealed that a third of CF patients have missed vital hospital appointments due to how much it costs to get to them.

It also found that the rising costs are causing 30 per cent of patients to choose between heating and eating, with people admitting they are running out of food before they have money to buy more.

What is Cystic Fibrosis?

Cystic fibrosis is a genetic condition that causes sticky mucus to build up in the lungs and digestive system.

This causes breathing problems and lung infections and over time the lungs may stop working properly.

It also causes problems digesting food and the body absorb

ing nutrients, meaning patients must eat more calories to avoid malnutrition.

The condition requires medication which needs to be stored in the fridge. Credit: ITV News Central

Gillian Kirk from Warwickshire also has Cystic Fibrosis.

The 62-year-old had to give up work because of the condition and says she's "very concerned about the huge cost increase in every aspect of our lives".

"Our fuel bill has more than doubled in less than a year", explains the 62-year-old. "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's important for good mental health to try and actually live, as opposed to simply existing", she adds.

"My biggest concern is no one knows when these spiralling prices will level out, I worry for people like me on a fixed income who don’t have a cushion of savings to rely on."

Other key findings from the Cystic Fibrosis Trust report

  • 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

Clare Corbett, director of external affairs at the Cystic Fibrosis Trust, says the findings from their research are "really worrying".

"One in three people have missed essential hospital appointments because of cost", she explains.

"This is really worrying because these appointments aren't a luxury, the appointments that people have with specialists are really critical to ensure that they stay well."

David Ramsden, Chief Executive of the Trust, described the findings in the report as "shocking".

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

"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.”

The government says it is offering 37 billion pounds of support for families to help them to navigate the rising cost of living.

Speaking to ITV News Central, chancellor Rishi Sunak described the package of measures as "significant, generous and well targeted at those who most need help".

Help and support for those with Cystic Fibrosis is available via the Cystic Fibrosis Trust.