Adult cystic fibrosis service

What is Cystic Fibrosis (CF)?

Cystic fibrosis (CF) is a genetic condition affecting more than 10,800 people in the UK. You are born with CF and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.

The gene affected by CF controls the movement of salt and water in and out of cells. People with CF experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body.

Most people are diagnosed at birth through the new born screening process. Usually patients will have experienced a life of managing the condition by the time they come to adult care.

Who are we?

Here at Newcastle we are a specialist Adult Cystic Fibrosis centre. We support all patients with CF in the area, we cover the North east region from Carlisle down to Middlesbrough. Our nearest neighbouring adult CF Centres are Glasgow, Leeds and York.

Our paediatric team at the Great North Children’s hospital look after the younger CF patients until they are ready to move to our care as they become adults.

Cystic fibrosis is a complex condition, therefore we are a large team that work very closely together to ensure the best care for our Patients.

The CF team is made up of Consultants, Specialist Nurses, Physiotherapists, Dietitians, Pharmacists, Microbiologists, Psychologists and Social workers. As required, we also work closely with the Palliative care and diabetes team.

We have a specialist CF Unit based on Ward 52 at the Royal Victoria Infirmary for inpatient stays. These are individual cubicles with ensuites and flat screen TVs. Our CF Clinic is based in the chest clinic in the New Victoria Wing. We can also offer community visits, additional outpatient or video link support as needed.

What will happen during my clinic appointment?

Typically, you will be seen regularly on a six or twelve-weekly basis. At this appointment you will be asked about your symptoms and current treatment. We can also offer telephone or video link consultations.

You will be seen by each member of the multidisciplinary team where we assess and make plans for your care according to your needs.

We also do outreach clinics to James Cook University Hospital and Cumberland infirmary for people that do not live more local to those regions.

How can I be referred into the service?

Typically you will be referred to us by your paediatric team, by a local respiratory consultant, or by your CF team from another region if you are newly moving to the area.