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.

You can find our children’s outpatient department at Royal Brompton Hospital in Fulham Wing on Fulham Road.

Find out more about how to get to the hospital.   

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 (except for the first Friday of every month)

We see most of our patients in our outpatient department on a regular basis. This is 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, we will see your child at least once a year. This is for an ‘annual assessment’. You may have to visit us more depending on the specific needs of your child.

Our team are all experienced in CF care. Although you may not see the same consultant at every visit, your child’s care will be discussed with them.

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 delays. 

If you know what you won't be able to come to an appointment, let us know in advance.

Extra clinic appointments

If your child is unwell and needs to be seen before their next clinic appointment, you can book into the next CF clinic or be seen on the ward. If you have a concern about your child's health contact a member of the CF team so they can arrange for you to 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, 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 assessment happens once a year, usually around the time of your child’s birthday. It involves a series of tests for us to check on your child's health.

Ventilation scans

We do these on Mondays for children under six years old to assess air supply to the lungs. You don’t need to make any special preparations for this scan.

We will get your child to breathe in a special gas through a mask and keep it on their face as we take some pictures. The pictures detect the radioactive particles coming from the gases using a special camera. The radiation used is limited and the benefits of the investigation far outweigh any risks to your child’s health. If you have any concerns, contact us.

Lung function for children aged 6 years and above

This is a special blowing test that measures the capacity of the lungs and airways. It looks at how big the lungs are and the flow of air through the lungs, letting us know how well they are working.

Chest X-ray

This X-ray checks the appearance of the lungs.

Blood test 

We will put a local anaesthetic cream to numb the area before we do the blood test. This helps us check your child’s health and look at things that might cause us to change your child’s treatment. This could include 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

• glucose tolerance tests.

We will explain each test 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.

You can find out more information about cystic fibrosis and advice and support from a number of different organisations by clicking on the 'Information' tab.