Joint letter to the Prime Minister

Joint letter to the Prime Minister

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Joint letter to the Prime Minister

On July 13, PCD Support UK co-signed the joint letter sent by National Voices to Prime Minister, Boris Johnson, asking him to urgently reconsider the decision to remove infection control measures. This is a worrying time for people with PCD and we are reminded that the vaccine does not offer 100% protection. Please continue to take precautions and reach out to your medical team if you have concerns. The letter has also been sent to all MPs and is available to download here.
Research Opportunity Alert!

Research Opportunity Alert!

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Research Opportunity Alert!

Although you may recognise her as our Chair, Lucy is studying a Masters in Social Research at the University of York. As part of her research, Lucy is looking for adult PCD patients (18+) in the UK, who are willing to have a 1-hour chat about their experiences with PCD (anonymously). To get involved, please complete the short expression of interest form

PCD Family Support Group AGM and Q&A

PCD Family Support Group AGM and Q&A

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PCD Family Support Group AGM and Q&A

You are warmly invited to our AGM and Q&A this Saturday 19th June, 10.30-12pm.

Join us for this year’s AGM which celebrates 30 years of the PCD Family Support Group! We have some BIG announcements and are looking forward to catching you up on everything that has happened in the past year. We will also announce the winners of our PCD Bake-Off competition AND will be holding a Q&A with a panel of PCD experts from different medical disciplines.

Please submit questions for the Q&A in advance (this form is anonymous): here

Once you have your ticket, we will email you a joining link a week prior to the event. Please be aware that we will be using Zoom and will be recording this AGM.

We look forward to bringing the UK PCD community together for this important event.

Sign up on Eventbrite here.

Call for participants! Quality of life survey

Call for participants! Quality of life survey

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Call for participants! Quality of life survey

Call for participants to complete an online survey.
We would appreciate if parents of children with PCD (younger than 6 years of age) could help us with the development of a quality of life questionnaire. This involves completing this online survey.

The survey takes approximately ten minutes to complete and includes questions relating to how PCD affects quality of life of both parents and children in this age group. By asking how important or relevant each question is for you and your child, we will be able to determine which questions should be included in the final quality of life questionnaire. This list of questions has been informed by a large number of interviews we completed with parents across Europe and North America.

Once developed, this quality of life questionnaire will allow us to assess whether children feel better or have an improvement in their quality of life. It will be used in future studies to investigate different treatments in PCD.
This study is being conducted by the University of Southampton which is one of four centres commissioned to provide specialist care for children diagnosed with PCD in England. In this study we are working closely with the other centres nationally (Leicester, the Royal Brompton and Leeds/Bradford) and internationally (Sick Kids, Toronto and Chapel Hill, North Carolina) to ensure this work represents English speaking patients with PCD.
For more information about this study, please contact Laura Behan who is a post-doctoral researcher at University of Southampton ([email protected]).

Get involved with research into fatigue and PCD!

Get involved with research into fatigue and PCD!

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Get involved with research into fatigue and PCD!

Is fatigue a symptom of your/your child’s lung condition? If so, The University of Liverpool is looking to talk to the following individuals:

Children and young adults (aged 6 to 25) who have been diagnosed with PCD
Parents/caregivers of children and young adults
Healthcare professionals who manage the treatment and management of PCD

The University of Liverpool wish to investigate the impact fatigue in areas such as education or social activities and how it is treated/managed. Additionally, for younger individuals, they wish to learn how they communicate their fatigue.

Head to their dedicated website: www.fared-study.org.uk

If you are free to chat and/or require some information on this study, please email [email protected]

Help us improve care for patients

Help us improve care for patients

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Help us improve care for patients

As part of Guy’s and St Thomas’ NHS Foundation Trust, Royal Brompton and Harefield hospitals continue to work together with their colleagues, including at Evelina London Children’s Hospital, and their partners King’s College Hospital NHS Foundation Trust, to develop plans to revolutionise heart and lung services for patients.

How to get involved: They are holding a series of online workshops from May to June 2021 to hear the views of patients, their carers and families on heart and lung care.

Join them for this first online event where they will talk about the work of the partnership, their proposal for heart and lung care and how you can take part.

Thursday, 13th May, 6.30-8pm, online

This event is for:

  • Heart and lung patients (adults, children and young people) who are receiving care from Royal Brompton and Harefield, Guy’s and St Thomas’, Evelina London, or King’s College Hospitals
  • Parents or carers of a heart or lung patient at one of our hospitals
  • Foundation Trust members who are current heart or lung patients
  • Foundation Trust Governors

Additional Workshops:

Creative theatre and arts workshops for Children and Young People with a heart or lung condition (11 May to 26 June)

Children aged 7-10: every Saturday, 15th May – 19th June
Children & young people aged 11-16: every Wednesday, 12th May – 23rd June
Young people aged 17-25: every Tuesday, 11th May – 22nd June
Workshops for parents and carers of heart and lung patients (17th May to 7th June)

Five workshops between Monday 17th May and Monday 7th June
Workshops for adult patients receiving care for congenital heart disease (25th May and 8th June)

Tuesday 25th May, 6.30 – 8pm
Tuesday 8th June, 12.30 – 2pm
To find out more about the partnership and how to register for these events, visit this link.

If you have any questions about these events, please contact Nancy at [email protected]