Information for people living with CF

Centre

Outpatients

What happens at outpatient clinic?

For most people, the main contact with the CF team will be through the outpatient department. Outpatient clinics are held on Monday and Friday afternoons in York and Wednesday afternoons in Hull.  Everybody should be seen in clinic at least every three months. It is really important to attend these appointments even if you feel well.

On arrival in clinic you will be shown into your own clinic room, and members of the CF team will come into the room to see you there. At each clinic appointment you will get the chance to talk to the dietitian, physiotherapist, nurse specialist and doctor. They will ask you questions about your health and medical management since the last appointment, as well as taking some measurements such as weight, lung function (spirometry) and sputum samples. Appointments with a member of the social care or psychology teams can also be arranged to discuss particular issues.

MOT

Once a year you will be offered a comprehensive assessment of your overall health (also called the 'MOT') which involves blood tests, an ultrasound of your liver and chest x-ray, as well as more in depth assessments with the physiotherapist and dietitian. We also take this opportunity to review your medication, and have a routine meeting with the psychologist. Every few years we will also request a bone scan to assess bone thickness, as well as more detailed breathing tests. Arrangements for all of this will be made by the specialist nurse on discussion with you.

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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