Hello! We are
PCD Support UK

We are the UK’s dedicated charity supporting those affected by Primary Ciliary Dyskinesia (PCD), championing vital research into this rare disease since we began nearly 30 years ago.

Having worked hard to establish a national PCD diagnostic service in 2006, followed by a Paediatric Management Service for PCD patients across England and Wales in 2012 we subsequently successfully lobbied for NHS funding for an adult service, now up and running since 2019.

Living with PCD

PCD affects 1 in 15,000 people in the UK

Today we tackle the latest challenges presented by this rare disease, putting our patient community
first. We also work in close partnership with our clinical professionals, championing research to improve the lifestyle of those affected by PCD.

Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in the UK. It is caused by abnormal motile cilia (motile cilia are the microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD can affect the lungs, nose, sinuses, ears and fertility.

Treatments

Physiotherapy and targeted antibiotics

Diagnosis

Diagnosis is only made in specialist units

Your Stories

Share your stories – please get in touch

Get involved in physio research!

Home

Get involved in physio research!

This is an opportunity to help researchers develop new ways of empowering patients with their physiotherapy treatments for bronchiectasis.

 

Aim

Airway clearance techniques (commonly referred to as “breathing exercises”) are used to help people with bronchiectasis manage their daily symptoms by helping clear mucus from their lungs.

The evidence to date shows that there is no specific airway clearance technique that would be best for patients to perform. Many physiotherapists decide which airway clearance technique is best for their patients. There is little evidence that patients contribute to decisions on which technique they would like to use.

This is why researchers from Newcastle Hospitals want to know how we can support patients in actively engaging with their physiotherapist during consultations, on what airway clearance technique they feel is best for them.

 

Volunteer Criteria

You must be aged over 18 to take part. You must have a diagnosis of bronchiectasis or be a partner/spouse/carer of someone who has bronchiectasis.

 

What will I be asked to do?

You may be invited to participate in a virtual/video call and speak with a researcher. This should not last for more than 15 minutes.

You will be asked a couple of questions around how to improve patient’s participation during their physiotherapy appointments; mainly around their airway clearance techniques.

We are interested in the knowledge and opinions of people living with bronchiectasis and their family/carers.

 

When and where?

No specific date. The researcher will aim to be flexible with a time that suits you. This part of the research will finish by the end of January 2022.

 

What will I get in return?

You will be offered a £10 for video/telephone call. If a face-to face meeting is appropriate any reasonable travel costs will be reimbursed in addition to the £10.

 

What will my contribution lead to?

You will help shape what research looks at in bronchiectasis and make sure they are important and meaningful to patients.

If you wish to take part or have any questions, please email: [email protected]

 

About Paul: “I am a respiratory physiotherapist with a specialist interest in bronchiectasis and research. I’m currently undertaking a NIHR pre-doctoral clinical academic fellowship to develop my skills in research and clinical practice. I am developing my application for a competitive national clinical doctoral research fellowship. I am also the long-term conditions champion for the Association of Chartered Physiotherapists in Respiratory Care (ACPRC) in the UK.”

Hello, we are PCD Support UK

We’re here for those affected by PCD. We talk about PCD as widely as possible and we champion research to improve its diagnosis, management and treatment.

PCD affects 1 in 15,000 people

It’s a rare, genetic disease associated with cilia abnormalities.

50% of people with PCD have their
organs in mirror position

PCD can affect the ears, nose, lungs, sinuses and fertility.

What is PCD?