Cost of CF
Our new report reveals 39% of people affected by CF are currently choosing between essentials like heating their homes and putting food on the table.
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.
The report also revealed:
- 1 in 3 people with CF worried about their mental health every single day.
- On average, people with CF are taking 34 tablets a day.
- 1 in 5 people with CF have missed a hospital appointment due to the associated cost of attending.
- 79% of people said in the last 12 months their physical health had prevented them living life to the fullest.
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 priorities:
- Equity for all - Access to free prescriptions for everyone with CF and an uplift in Statutory Sick Pay.
- Breathing greener - We want to improve air quality for those with lung conditions, including introducing the early alert warning system to protect those with CF.
- Access to care - Secure the future of CF specialist care and address staffing recruitment and retention in CF teams.
”Because I’m living from pay check to pay check and barely scraping by, it’s hard for me to afford the simple things like travelling to go see family that live an hour or more away. I can’t afford to do anything really so
I just sit inside and that takes a toll on my mental health. I can’t afford the gym or any activities to keep me
active and fit. I can’t afford a better diet because I can only buy the bare minimum from shops.”
- Person with 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
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.
Financial support
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.
Campaigning hard
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!