Cystic fibrosis (children)

Our Trust is a leading centre in the care of children and adults with cystic fibrosis (CF).

Our paediatric CF clinic offers a team approach to all children and their families. We aim to provide a comprehensive (holistic) approach to CF care.

Our children’s outpatient department at Royal Brompton Hospital is situated in Fulham Wing on Fulham Road.  

Care of children with cystic fibrosis guidelines

 Full online version or download the PDF (6.6MB)

Regular CF clinics and annual assessment

Clinics are held in the children’s paediatric clinic on:

  • Monday – 1:30pm to 4:15pm

  • Friday – 1:30pm to 4:15pm (but not on the first Friday of every month)

The majority of patients are seen in our outpatient department regularly, usually every two months, as recommended in the clinical guidelines from the Cystic Fibrosis Trust, the British Paediatric Association and the British Thoracic Society.

If your child’s care is shared with your local hospital your child will be seen here at least once a year. This is called the ‘annual assessment’. Visits to Royal Brompton Hospital may be more frequent according to the specific needs of your child.

Our medical team are all experienced in CF care. Although you may not be seen by your consultant at every visit, your child’s care will be discussed with him or her.

CF clinics

You may notice that our clinics are busier at some times than others. To avoid a long wait in clinic it is important that you keep to your appointment time. This will help prevent long waiting times and congestion. 

Please tell us in advance if you are unable to keep your appointment.

  • Extra clinic appointments 
    If your child is unwell and needs to be seen before their next clinic appointment they can be booked into the next CF clinic or be seen on the ward. If at any time you are concerned about the health of your child please contact a member of the CF team so they can arrange where you will be seen.

  • Visiting health professionals
    Visiting doctors or nurses sometimes come to the clinic to learn more about CF care. We will check with you that you are happy to have them at your child’s consultation. If you don’t want anybody else there, please tell a member of the CF team in the clinic. You do not have to give a reason and your decision will not affect your child’s treatment in any way.

Annual assessment 

This is carried out once a year, usually around the time of your child’s birthday. It involves:

  • Ventilation scans 
    We do these on Mondays for children under six years old. You don’t need to make any special preparations for this scan which assesses the air supply to the lungs. Your child will breathe in a special gas through a mask which will need to stay on his or her face whilst pictures are taken. 
    The pictures detect the radioactive particles coming from the gases using a special camera. Radiation is used as sparingly as possible and the benefits of the investigation far outweigh any risks to your child’s health. If you have any concerns, please contact us.

  • Lung function for children aged 6 years and above 
    A special blowing test that measures the capacity of the lungs and airways (how big the lungs are) and the flow of air through the lungs (how well they work).

  • Chest X-ray 
    To check the appearance of the lungs.

  • Blood test 
    A local anaesthethetic cream is used to numb the area before the blood test is done. The blood test helps us monitor your child’s health and look at things that might cause us to change your child’s treatment, for example, liver function, glucose and vitamin levels and any bacterial or fungal infection.

  • Other tests 
    We may also need to perform other tests such as bone density, liver ultrasound, faecal fat collection, or glucose tolerance tests. Each test will be explained to you if your child needs it.

We collect the results of this annual assessment and enter them onto our computer database. We then send a report including blood results, ventilation or lung function, height and weight charts to your GP and your shared-care consultant.

If you would like a copy, please ask the doctor at the time of the assessment. The results take at least two weeks and will be discussed at your next clinic visit.