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.
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.
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.
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.
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.
This X-ray checks the appearance of the lungs.
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.
We may also need to perform other tests such as:
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.
Web resources and information
For general information on your condition, we recommend the NHS Direct website. It is specifically aimed at patients and dedicated to giving help and advice, backed up with medical expertise.
In addition, the websites of the British Heart Foundation, British Lung Foundation and Cystic Fibrosis Trust, all of which support our work at the Trust, include information on specific conditions, treatments and disease management.
If you have been told you will be undergoing laboratory tests, for instance a blood test, in hospital and you would like to know more about what it involves and what it could reveal, then Lab Tests Online UK could help you.
National Library for Health - brings together information and links for the medical profession and patients. Search the condition or treatment you want to know more about. Publications from a variety of sources, including NHS Direct and the British Medical Journal.
Lab Tests Online - lists over 200 different tests that patients routinely undergo, explains the purpose of the test, what it involves and further information. This site is the result of a collaboration the Association for Clinical Biochemistry and the American Association for Clinical Chemistry.
British Heart Foundation - a charity dedicated to researching and preventing heart conditions and providing care and support for those living with them. Their website includes a section on living with heart conditions that has information on the conditions, treatment, recovery and support for patients.
British Lung Foundation - a charity involved in research into lung disease, preventative work and support and care for people living with lung conditions. Their website includes resources for finding out more about conditions, diagnosis and treatment, living with lung disease and children.
Cystic Fibrosis Trust - a charity working to improve the lives of people with the condition, raise its profile and fund research into a cure. Their website includes information about the disease, living with it, its symptoms and treatments.
Pulmonary Hypertension Association UK - the Pulmonary Hypertension Association (PHA UK) is the only charity in the UK especially for people with pulmonary hypertension (PH). Their website includes information on PH, treatment and management of PH and support for family and friends.
Paediatric to adult CF transition
We have information for patients for when they are ready to move from our paediatric CF ward to our adult service. Find out more.