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.
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.
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.
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.
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.
We have information for patients for when they are ready to move from our paediatric CF ward to our adult service.