Patient involvement opportunity!

Patient involvement opportunity: Helping hospitals to improve paediatric PCD care


We have been asked by the NHS commissioners (paediatrics) to recruit four families who have recently had a consultation over the phone or via video conferencing software. The commissioners are looking to understand our families’ experience of care during the COVID-19 pandemic and to work out how these services can be improved. By participating in this opportunity, you will be able to share your views on what went well with your child’s / children’s care recently and to feed back on how this could be developed in the future. For example, would you prefer to just have appointments via tele-conference? Do you prefer coming into hospital for face-to-face sessions? Have you been able to coordinate having sputum testing via your GP or local hospital in order to inform your specialist centre? Please note, you do not need any specialist knowledge to participate in this focus group, just experience of having had a consultation during COVID-19!


These focus groups will take place remotely on 16th June from 3-5pm and 22nd June from 1:30-3:30pm. If you are interested in this opportunity, or want further information, please contact by 10th June at the latest.

Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.