Cost of CF
Our new report reveals 9 out of 10 individuals affected by CF worry about the cost of living.
Living with CF comes with significant and never-ending costs. Recent research from the University of Bristol, supported by Cystic Fibrosis Trust, showed that the average family incurs over £6,500 in combined additional costs and lost income as a result of the condition. For many people living with CF and their families, the cost of living crisis has had a profound and devastating impact.
What we're calling for
We're calling on the Government to implement policies that we believe will help address the issues our community have identified and ensure people with cystic fibrosis can truly live a life unlimited by their condition.
Our top five priorities
Benefits linked to inflation, not CPI
An end to unnecessary benefit reassessments
Free prescriptions for everyone with CF
No more VAT on energy bills
We're also calling for:
- An end to Universal Credit migration
- Access to a social worker for everyone with CF
- A meaningful increase to the Warm Home Discount Scheme
- Statutory Sickness Pay (SSP) reform
- Additional awards for long-term conditions
I can’t look after my health enough while working. I can’t afford not to work. So I work and put my health second.
- James*, who has CF
How does CF affect someone's finances?
Our research has shown that people living with CF might have reduced earnings due to the treatment burden of CF or time spent in hospital, or they might need to find money to cover things like hospital travel costs.
They might 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.
Why are the costs of living rising?
Inflation, which is the rate at which prices rise, has reached its highest recorded level in decades. This might affect things like the cost of household goods, taxes and certain bills.
The COVID-19 pandemic and the global energy crisis are also causing rises in the costs of living, which may cause additional hardship.
How have the rising costs of living affected the CF community?
Sadly, we have seen this increase in hardship in our community reflected in demand for our support services. Since 2015, applications for our emergency grants have increased by over 200%. In 2016, we set up a welfare advice service which provides dedicated benefits advice to people with CF, and since then we have supported over 1,000 people with Personal Independence Payment (PIP) claims alone.
In December last year, we launched a winter hardship fund, because through our emergency grant scheme, we recognised that many in the CF community were struggling to eat properly, heat their home or buy household essentials.
What should I do if I'm worried about the cost of living?
Some of the questions might be hard hitting or bring up complicated emotions, and we would encourage those who need advice relating to topics raised within the survey 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.
The financial support we offer includes:
- Grants for people with cystic fibrosis to help with some of the costs associated with the condition, including emergency, transplant, health and wellbeing, holiday, home care, education and prescription pre-payment certificate grants.
- Support with applying for benefits, such as DLA, PIP or Universal Credit.
- Information on prescription charges and grants to cover the cost of a pre-payment certificate.
- Income Maximisation Service, supporting you to access our benefits advice and helping you make the most out of your money.
- Helen Barrett Bright Ideas Awards to help people with cystic fibrosis turn their hobbies into new businesses.
Our Helpline is available to anyone looking for information or support with any aspect of cystic fibrosis, a listening ear, or just to talk things through.
We provide a range of grants for people with cystic fibrosis and their families, support for those applying for benefits and information about prescription charges.
We are here to shout loud and campaign hard for better care and services for people with cystic fibrosis (CF), but to really be heard we need you to join us!