Primary ciliary dyskinesia service for adults

Our adult primary ciliary dyskinesia (PCD) service provides care for patients who have a new or existing diagnosis of PCD

Our service is one of four specialist centres in England that provides specialist care to adults with PCD, and has one of the largest groups of PCD patients in the world. 

Our consultants

Appointments

Your appointment 

We offer face-to-face and online (video) appointments. Face-to-face appointments take place in our outpatient department at Royal Brompton Hospital.

How to get an appointment

If you have a confirmed diagnosis of PCD, you can be referred to our service from your GP or respiratory consultant. 

Changing your appointment 

If you are unable to attend your appointment, please let us know as soon as possible. This means that we may be able to offer the appointment to another patient. 

You can change or cancel your appointment by following the link in your text message reminder, or by calling the outpatients department on 020 7351 8011. If you have signed up to MyChart, you can also change your appointment via the patient app.  

If your appointment is with the physiotherapist, you can change or cancel your appointment by emailing them.

If you miss your appointment and do not let us know, you may be discharged back to your GP.

Before your appointment

Please arrive 5-10 minutes before your appointment time.

If you have an in-person appointment, please bring:

  • a list of medicines you are taking 
  • an up-to-date spirometry completed prior to your appointment 

If your appointment is with the physiotherapist, you should also bring:

  • any equipment or apparatus you use for chest clearance. This is so your technique can be checked if needed

If you have an annual review appointment, please bring your nebuliser/compressor device with you if you have one. This is so we can carry out its annual service.  

During your appointment

Our clinic for annual reviews and follow-up appointments takes place on Fridays. 

Annual review appointments take place face-to-face and you will see a PCD doctor, PCD specialist nurse, PCD specialist physiotherapist and, depending on availability, an ENT doctor. Your appointment may also include investigations such as blood tests and chest x-rays. You should expect your visit to last around 2 hours.

Follow-up appointments are with a PCD consultant or specialist and may take place face-to-face or online. 

Physiotherapy follow-up appointments take place on Tuesdays and are held online. Depending on need, we can also arrange physiotherapy appointments on other days in the week and can be offered face-to-face or online.

After your appointment

We’ll arrange any follow-up appointments you may need. 

You can use the MyChart patient app to view appointment information and get reminders of upcoming appointments. If you do not have the MyChart app, you will receive appointment reminders via your preferred means of communication.

Contact us

Phone: 020 7352 8121, extension: 84862, voicemail only. Messages will be picked up Monday to Friday, 9am to 5pm. 

Email: AdultPCD@rbht.nhs.uk – for all queries related to care. Referrals should also be made to this email address.

PCDadultphysio@rbht.nhs.uk – for physiotherapy queries related to PCD. 

Emails are monitored Monday to Friday, 9am to 5pm.

Location

Address: Royal Brompton Hospital, Fulham Wing, Dovehouse Street, London SW3 6JY

We’re open Monday to Friday, 9am to 5pm.

Share