https://www.bristol.ac.uk/news/2023/january/cystic-fibrosis-financial-impact-report.html
People with cystic fibrosis are now spending more than £6,500 a year more than if they did not have the condition, according to new research.
At a time of financial strain, a new report out today shows the extra cost of having cystic fibrosis is more than £6,500 a year on average.
This financial burden is made up of both extra spending, including heating, essential but costly dietary needs, attending medical appointments, home medical equipment, and prescription charges, as well as loss of income, which create a ‘double hit’ to the finances of adults with cystic fibrosis (CF) or those caring for children with lifelong condition.
The research, led by the University of Bristol and Cystic Fibrosis Trust, also reveals that families with CF are more likely to be struggling with their finances than the general UK population with a quarter (24%) of adults with CF and over a third (35%) of parents of children with CF reporting that just meeting their monthly bills was a ‘constant struggle’. This is compared to 17% of UK households overall.
The study analysed focus groups, one-to-one in-depth interviews and an online survey with adults with CF and parents of children with CF.
Study author Jamie Evans, Senior Research Associate from the University of Bristol Personal Finance Research Centre, said: “This study highlights how long-term health conditions such as cystic fibrosis can have significant knock-on impacts on families’ finances, both by adding extra costs and potential resulting in loss of income as well. Financial difficulty can also worsen people’s mental and physical health – for example, by forcing them to cut back on spending on the very things that keep them healthy. With this in mind, it is crucial that policymakers take action to protect the financial wellbeing of those with CF and similar conditions.”
The full results showed:
– A typical family with CF will lose £564 per month (£6,768 a year) because of the condition, with parents of children with CF reporting higher financial impacts than adults with CF.
– An adult with CF will typically spend £209 extra a month on increased costs because of their condition, while parents of children with CF spend £291 more per month, as a result of cost associated with travel to and from medical appointments, medical treatments, dietary requirements and higher energy bills.
– Three-in-five (59%) of adults with CF had also incurred some form of income loss as a result of their condition in the last two years – for example, reducing working hours, taking unpaid leave to attend appointments or leaving work altogether.
– Other financial issues such as difficulty accessing insurance and benefits, prescription charges and finding suitable accommodation disproportionally disadvantage people with CF compared to the general UK population.
– Overall, 76% of adults with CF and 85% of parents of children with CF report that thinking about their finances makes them feel anxious.