People with cystic fibrosis fear financial cost of winter

The Trust is seeing a rise in the amount of extra support it’s giving to protect the health of the most vulnerable, and those at risk of choosing between heating and eating. This year has seen the largest number of applications to the charity’s Winter Support Fund, with 530 people requesting the £225 grant, an increase of over 200 from the previous year. Of those who applied in October, 59% were for under 18s with CF, and 50% told us their household income bracket was under £15,000 per year.

Since the start of October 2024, the Trust’s Welfare and Rights team have had 135 client (or Social Worker) enquiries and noticed an influx of calls when the weather began to get cold. Of the 122 welfare benefits enquiries, 34 were in relation to help with a benefits appeal, 9 in relation to cost of living problems,  and the rest were benefit checks, claims, reviews and reconsiderations for benefits.

And with predictions of frequent cold spells and significant winter storms as well as rising costs and increased risk of infections over the winter, for people with CF, the costs of staying well are a significant extra burden.

For a typical family, the added financial cost of having cystic fibrosis is approximately £6800 a year. This is made up of both extra spending to keep well (heating, maintaining a high-calorie diet, attending medical appointments, home medical equipment, prescription charges) and loss of income.

This year has also been more challenging due to pancreatic enzyme supply issues, as most people with CF need to take this medicine. 54% needed to travel further or make more frequent trips to get their medicines, and of these, 90% had experienced increased travel costs.

Cystic Fibrosis Trust know that with colder weather, and the cost of living continuing to rise, people with CF are likely to struggle more than previous years. In the last financial year, the Trust provided 324 Winter Support Fund grants to those most in need of support totalling over £70,000. Of those who received the grant:
•    45% had smaller meals than usual or skipped meals because they couldn’t afford or get access to food
•    65% have struggled to buy the basics needed to stay well with CF
•    73% used the fund towards energy bills and 49% used the fund towards food shopping
•    96% ‘strongly agree’ or ‘agree’ that they felt less stressed and anxious after receiving the grant

During the same financial year the Trust also provided 377 Emergency Grants, of which the top reasons for applying were unexpected hospital admission (39%), financial difficulties (25%), loss of work (9%) and loss of benefits (8%).

Samantha, 34, who has CF, sought the help of Cystic Fibrosis Trust when her benefits were wrongly stopped last Christmas. She said: “My biggest gripe is that I want to work full time, but last time I tried to, I got sick and ended up losing my flat. I didn’t have support and had to move in with my Mum. I feel like I’m stuck in a cycle and not able to live the life I want to. As much as I want to, I know if I tried to go full time again, I’d be risking my health and not able to maintain it, especially in the winter.”

Earlier this year, the Trust launched the Your Life and CF report, revealing the ongoing pressure the cost of living is having on those affected by CF. 84% of respondents were worried about the cost of living and 39% were prioritising one essential over another. 21% reported that they ran out of food before they had money to buy more.

For information and support this winter, please take a look at the Trust’s blog. Cystic Fibrosis Trust’s Helpline is available on 0300 373 1000, on email at [email protected] or on WhatsApp 07361 582053.