How we’re campaigning for better mental health support for the CF community

We have long been interested in how CF affects the wellbeing of our community - what unique pressures people with CF are facing, and what could help reduce the burden. Our recent annual reports on staffing in CF centres showed that there are gaps in mental health and social worker support, access to social workers particularly in paediatric care is worryingly low, and up to 12% of children and 4% of adults were unable to get psychological support when they needed it. 

The ongoing cost of living crisis, the COVID-19 pandemic, and complex feelings around the impact of Kaftrio or other modulator therapies have all been raised by people with CF as factors affecting their mental health. Many other concerns have also been shared with us across our channels, such as body image issues, difficulty accessing the benefits system, and education and employment challenges.  

The Trust believes our community has the right to live a life without the limits imposed by CF. We already provide a dedicated support service for people with CF and their families through our Helpline and information resources. From managing your finances, to adjusting to new treatments, to coping in work or education, we are here to make sure everybody with CF has the information and support they need, when they need it. We have also recently launched a new cost of living hub where you can find support on managing the challenges we’re all facing this winter.  

As we mark World Mental Health Day (10 October), we also want to commit to continue to highlight the mental health challenges facing the CF community with decision makers at every opportunity we get, and to ensure the issues affecting you are heard and understood. So when Parliament returns, we will ask MPs to a debate raising the importance of CF psychologists and social workers in CF care and ask the Government to directly address the recruitment and retention issues which leave many in our community without access to these vital professionals. 

We recently asked you to tell us about how psychological and social support has impacted your experience of care.  Responses so far show you really value the help and support in navigating life with CF that you get from your CF team. But many of you also told us you either couldn’t access these services, or didn’t even know they were available to you. One person with CF commented: “I wish I had someone to speak to who already knew the small details about how CF can affect someone so they understand before I need to say anything.” We’re always looking to hear more from our community and you can share your views here.  

We know that these issues aren’t limited to just CF services, so we will also be looking to bring together a coalition of partner organisations that can jointly advocate for psychological and social support in specialised healthcare teams to be properly funded by Governments across the four nations. We all know the value these roles can bring in preventative care and helping people in our community into work and education, and to feel confident and supported to thrive.  

We will continue to advocate on behalf of our community on wellbeing and mental health matters, and we are committed to getting the change needed to improve things for everyone affected by CF. We won’t stop until everybody can live without the limits of CF.  

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,900 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

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