CForYourself: Behind the scenes at Cystic Fibrosis Trust

06/12/24 • 41 min

CForYourself: A podcast from Cystic Fibrosis Trust

In this special CF Week edition of CForYourself, our host Lucy goes behind the scenes at Cystic Fibrosis Trust. To mark our 60th anniversary, she chats to some of the team to hear about their role, the changes they’ve seen in their time at the Trust, challenges the community are facing, and hopes for the future.
We hear from Belinda who works in the research team, Sangeeta, Welfare and Rights Advisor, Community Fundraising Manager Jess, and Eilidh, our Social Media Officer.
An inspiring and informative chat which we hope you enjoy listening to!

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp.
Issues that may be affecting you - Find out about Creon shortages, the NICE appraisal, and the cost of living crisis, what we're doing to help resolve these issues, and how we can support you.
CF Week - Find out more about CF Week and Wear Yellow Day, and how you can get involved.
Financial support - Cystic fibrosis can bring its own financial burden. 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.
Research on gut symptoms in CF
Cystic Fibrosis Trust pledge over £2m to address research priorities of people with CF
Cross infection - Cross-infection, or cross contamination, occurs when one person spreads an infection to another, either directly or indirectly. Find out how cross-infection affects people with cystic fibrosis, and what is done to combat the issue.

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp.
Issues that may be affecting you - Find out about Creon shortages, the NICE appraisal, and the cost of living crisis, what we're doing to help resolve these issues, and how we can support you.
CF Week - Find out more about CF Week and Wear Yellow Day, and how you can get involved.
Financial support - Cystic fibrosis can bring its own financial burden. 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.
Research on gut symptoms in CF
Cystic Fibrosis Trust pledge over £2m to address research priorities of people with CF
Cross infection - Cross-infection, or cross contamination, occurs when one person spreads an infection to another, either directly or indirectly. Find out how cross-infection affects people with cystic fibrosis, and what is done to combat the issue.

Previous Episode

CForYourself: Youth Advisory Group takeover

In episode seven, Lucy has a virtual catch-up with Tilly, Rosie and Tehya from the Trust’s Youth Advisory group, otherwise known as YAG. They talk about growing up with CF, managing friendships, transitioning from primary to secondary school, navigating high school with CF and so much more.
We also hear from Ellie Mindel, Lead for Children and Young People at the Trust, to find out a little bit more about the YAG programme and how people can get involved.
Read the full episode transcript.

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp.
CF Forum - Join the conversation on our Forum and connect with other people with CF.
CF and transition - Find out about the move from paediatric to adult care and what it could mean for you and your family.
Secondary school and CF - Whether you're a parent, young person or teacher, here you can find out more about the issues surrounding CF and secondary school education.
Work Forwards - Find out about our programme of employment support for people with CF and their loved ones.
Financial support - Cystic fibrosis can bring its own financial burden. 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.
Join YAG - We're always looking for new people to join us, so if you're 14-25 years old and have CF or are close to someone who does (like a brother or sister) and would like to get involved, drop us an email at [email protected].

The podcast is also available on Spotify and Apple Podcasts.

Next Episode

CForYourself: Talking transplant

Everyone going through the transplant process will have a different experience and journey. Adjusting to life after an organ transplant can bring new opportunities, but also new challenges. This can be complex to navigate, both practically and emotionally.
To mark Organ Donation Week, our host, Lucy, has a virtual tea and a chat with Zanib Nasim, to talk about her experience of having a transplant. In an emotional and honest conversation, they cover adjusting to life post transplant, Zanib’s hopes for the future and what the experience has taught her.
Zanib is a member of the Trust’s involvement group, so you'll also hear about how she uses her voice to influence the work of Cystic Fibrosis Trust. Plus, Louise Hodge, Involvement Coordinator at the Trust, explains how by joining the group, your experiences and expertise can inform future clinical care, research and the work of the Trust.
Read the full transcript.

For more information and support on any of the issues we've talked about in this podcast, you can call our Helpline on 0300 373 1000, or email [email protected], or message us on WhatsApp
Find out more about cystic fibrosis and double lung transplant, liver transplant and other organ transplants. You can also find our transplant information resources for adults and children with CF, and their friends and family, to help them understand what it might mean for their loved one.
Read our information on adjusting to life after transplant.
Join our involvement group to share your experiences and influence the work of the Trust, researchers, and clinicians. Email [email protected] for more information.
Find out more about Organ Donation Week.

CForYourself: A podcast from Cystic Fibrosis Trust - CForYourself: Behind the scenes at Cystic Fibrosis Trust

Transcript

Lucy (host): Hello and welcome to season two of CForYourself, a podcast brought to you by UK charity Cystic Fibrosis Trust. I'm your host, Lucy Baxter, and I myself have cystic fibrosis. I'm one of over 10,900 people in the UK living with the cystic fibrosis.

Now, CF is a genetic disease that causes a build-up of sticky mucus in the lungs. So that means I can experience a range of different symptoms, like struggling to put on weight, feeling breathless and being tired.