The Leeds Teaching Hospitals NHS Trust


Children's Primary Ciliary Dyskinesia service


Primary Ciliary Dyskinesia (PCD)

PCD is an inherited, relatively rare condition of abnormality of the cilia.  Cilia are the microscopic hairs which beat within the airways moving secretions (mucus) along the respiratory tract. PCD can affect many parts of the body including lungs, nose and ears. In PCD, the moving of cilia is weak the secretions in the respiratory system can get stuck and build up.  These blockages need to be moved with physio, exercise and nose blowing otherwise people with PCD can become unwell.

The PCD Team offer:

  • physiotherapy advice including the use of equipment and techniques
  • advice on the patient’s condition and understanding of PCD
  • support to parents of PCD patients and we work alongside you to support your child

We see patients in various settings:

  • in an outpatient clinic
  • in their home environment
  • in school

We work with young people with PCD, from high school age, through to moving to adult care services -  a process of known as transition, using the Ready, Steady, Go documentation. This helps the young person to develop a better understanding of their condition and how to look after themselves, building confidence and preparing them for being more independent in adulthood.

A group of our patients have worked together to develop a booklet for children with PCD to understand more about their condition and why activity is important.

PCD booklet

 

 

 

 

 

 

 

 

 

The North of England Primary Ciliary Dyskinesia Management Team

The Primary Ciliary Dyskinesia (PCD) team work in partnership with Bradford Teaching Hospitals NHS Foundation Trust.

We provide additional support in all of our regional and local clinics and work alongside our colleagues in Leeds, Bradford, Sheffield, Hull, Middlesborough, Newcastle, Manchester and Liverpool. We currently have over 150 children to whom we review and visit regularly.

Additional information

You can find further information on PCD by visiting the PCD Family Support website - www.pcdsupport.org.uk