Information for people living with CF

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Annual Assessment 

As part of keeping your health as good as possible, we organise a yearly assessment. At the clinic before your annual assessment is due, we will discuss with you what tests we would like you to have, and how we can fit everything in around your life. Every year, we aim to get results from tests such as bloods, chest x-ray, ultrasound and a urine test. We also aim to get full lung function tests, CT scanning, overnight oxygen levels and a bone density scan about every three years. The results are discussed at your next clinic appointment, and we give you copies of your results to keep.

These tests monitor for any early signs of Cystic Fibrosis related conditions, such as diabetes and liver disease, and are important for your long term health, but we understand they can take up a lot of time and we hope to work together to make the process as easy as possible. At least once a year we also offer you the opportunity to have longer physiotherapy, dietetic and psychology appointments to review these areas of your care.

Right now across the UK, there are around 6,500 people in need of an organ transplant, including around 150 children and teenagers. On average three people die every day in need of an organ transplant because there just aren’t enough organ donors.

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Fundraising

We are always amazed and extremely grateful when people go out of their way to raise money for cystic fibrosis services. Some people are motivated by a family member or friend living with CF, and some people have heard about the disease in the press and offer to help.

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