Get involved in physio research!

Get involved in physio research!

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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.”

PCD Live: The COVID-19 and PCD Study

PCD Live: The COVID-19 and PCD Study

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PCD Live: The COVID-19 and PCD Study

Join us on Monday 29th Nov to hear about the COVID-19 and PCD study with Dr Eva Pedersen.

 

What’s the talk about?

The COVID-PCD study was set up in Spring 2020 together with PCD support groups to follow people with PCD through the pandemic. During the past 18 months, more than 700 people with PCD from more than 45 countries have taken part in the study, with over 150 of them from the UK! The data collected through COVID-PCD has helped to find out how many people with PCD got COVID-19 and how severely ill they got.

The study continues and will answer important research questions about PCD that go beyond the COVID-19 pandemic.

Join us for the results of this ongoing study that you have been contributing to over this last 18 months!

Sign up here!

 

Who is giving this talk?

Dr Eva Pedersen is a postdoctoral fellow at the University of Bern and is originally from Denmark, where she studied Public Health and Epidemiology in Copenhagen. Eva has been working in the Research group of Claudia Kuehni, an expert in PCD research, since 2016, and Eva started working on PCD research in March 2020.

Sign up here!

PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon

PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon

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PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon

Join us on Wednesday 3rd November for the newest instalment of PCD Live: “That’s rare, I doubt you have it” with Lucy Dixon.

Sign up on Eventbrite now!!

 

What’s the talk about?

In this month’s PCD Live, Lucy will talk about some research she has done with others with PCD to understand how people are impacted by PCD from different perspectives. She will share some of the stories of our members to highlight the positive and negative impacts that PCD can have. Come and hear about this unique project in a safe and informal setting. Open to all!

 

Who is giving this talk?

Outside of her role as the chair of PCD Support UK, Lucy is studying for her Masters in Social Research at the University of York. Lucy has focused on addressing inequality in both education and health throughout her professional career.

 

Important details to note:

This event is aimed at people with/affected by PCD, or anyone who has an interested in PCD. Anyone below the age of 18 can attend but must ensure they permission from a parent/guardian to do so. The event will be held via Zoom. We will send out joining details 24 hours before the event.
This event is scheduled for 5.30-6.30 PM UK time.
The hashtag for this event is #PCDLive – don’t forget to tweet, facebook and insta us!

Sign up on Eventbrite now!!

 

 

 

PCD Live! Fertility

PCD Live! Fertility

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PCD Live! Fertility

Ever wondered how PCD may affect fertility? Both male and female infertility will be discussed at our next PCD Live! Join us on Thursday 29th July at 5:30 pm. Johanna and Anu will speak about fertility issues that may arise in those with PCD, as well as the management of infertility in PCD. Sign up on Eventbrite now!

PCD Live!: Breathing Pattern Disorders

PCD Live!: Breathing Pattern Disorders

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PCD Live!: Breathing Pattern Disorders

What’s the talk about?

3 PCD specialist physiotherapists led a session on breathing pattern disorders and physiotherapy in PCD.

Meet the team!
Hannah, Liz and Lynne work together with the other PCD physiotherapists as part of the National PCD Management Service.

Hannah
Hannah Wilkins is a respiratory physiotherapist who has been working for the University hospital Southampton paediatric PCD service for the past 4 years. She worked with adults with cystic fibrosis for many years in both Bristol and then London. When she moved with her young family to Hampshire five years ago an exciting opportunity opened up for her to join the paediatric PCD team there. She has loved working with the children and young people in her centre and helping develop the PCD service there. The development of the adult PCD service is a very exciting time for PCD with the opportunities it gives in helping us understand the condition more and working together to ensure that we are providing a service that focuses on all aspects of having PCD.

Liz
Liz Shepherd has been a respiratory physiotherapist at Southampton General Hospital since 2012. During her time in Southampton she has worked with people with many different lung diseases including cystic fibrosis, bronchiectasis and COPD. Liz has also spent time working as a researcher and until recently was involved in a large trial in Southampton which helped to improve medication adherence in people with cystic fibrosis. Liz has been with the Southampton adult PCD team since it started in September last year. She has really enjoyed the opportunity to work with such a diverse group of patients in the adult PCD service and to use her knowledge of respiratory conditions to improve their health and wellbeing.

Lynne
Lynne Schofield is a respiratory physiotherapist who has been working in the North of England Paediatric PCD Service for 8 years. Lynne had worked with young people with PCD in her previous role as a physiotherapist in Bradford, this is the area with the highest rate of people with PCD. She’s super enthusiastic about all things to do with sputum clearance and really enjoys supporting young people with PCD to stay well through using regular airway clearance and exercise.

Please don’t hesitate to get in touch with us if you have any questions: [email protected]support.org.uk