Primary Ciliary Dyskinesia (PCD)

Primary Ciliary Dyskinesia (PCD) is a relatively uncommon inherited disorder that mainly affects lung, ears and nose. It could also have effects on other body systems including heart and circulatory system. The Leicester Royal Infirmary hosts one of the three national diagnostic centres and one of the four national management centres for PCD in children and adults. These services are commissioned directly by NHS England. 

What is Primary Ciliary Dyskinesia?

The airways (including nose, middle ear, windpipe) are lined by cells that have tiny mobile hairs called cilia which help to remove mucus and debris by rhythmic beating. Primary Ciliary Dyskinesia is an inherited, long-term condition caused by an abnormality in the movement of cilia. These cilia either do not beat, beat irregularly or rarely do not exist at all and in these individuals, the mucus does not get moved on. The build-up of mucus in the chest increases the likelihood of infections and possibly more detrimental consequences. It can lead to hearing loss and constantly blocked or runny nose. Many patients with PCD also commonly have other conditions such as situs-inverus and dextrocardia (heart on the right side of the body). It can also predispose to infertility. 

Diagnostics team

The PCD diagnostic team at the Leicester Royal Infirmary is one of only three national centres that have the full range of PCD diagnostic equipment available to help diagnose possible PCD in patients. 

The service covers the whole of central England as well as the North of England and accepts referrals from a wide range of sources such as: respiratory consultants, cardiology consultants and GPs.

PCD management

The PCD management service is divided into the children and adult teams. Both teams are multi-disciplinary and includes respiratory consultants, specialist nurse, specialist physiotherapy, ENT surgeons and audiologists. The team also works closely with other professionals including respiratory physiology and psychology. Both children and adult services are headquartered at Leicester. The other centre for both these services is based in Birmingham. 

We also liaise regularly with the local hospitals of patients so that we are able to give the best care possible – we won’t replace them, just help patients better manage their condition.