A review of the care of children and young adults with Primary Ciliary Dyskinesia (PCD) in England (Parent/carer version)

A review of the care of children and young adults with Primary Ciliary Dyskinesia (PCD) in England (Parent/carer version)

As a provider of care for children and young people with PCD we have a commitment to be continually improving the care and service that we offer and ensure that it meets the needs of our patients. Therefore we are asking parents, carers and any young person aged 12 and over with PCD to complete the survey so that we can try to improve the care you receive.

If you have any children with PCD aged 12 and over, we are also keen to get their feedback and thoughts, we have a similar but separate survey especially designed for a young person to complete.

If you are a carer of more than 1 child with PCD (who are cared for in a paediatric service) please would you only complete the survey once, filling in any of the questions as they relate to any of your children with PCD. 

We would love to hear about your experiences of the care you receive and find out what ‘your’ ideal PCD Service would look like.


The following survey should take about 20 minutes to complete depending on how much you'd like to tell us. If you are unable to complete the survey in one go and want to save it and resume the survey from where you finished, press the 'save and quit' button (in the top right hand corner of each section screen) the user will then be given instructions on how to access and finish the survey at a later date.