Latest Update from the National Leads for PCD 22nd June 2020

Update Statement from the National leads of the children and adult PCD centres in England – 22nd June 2020

Advice on what to do at the end of the initial ‘shielding’ period at the end of June



We continue to review the available data on COVID-19 and we remain fortunate that in children (in the general worldwide population) COVID-19 typically only leads to mild symptoms.

As you may well be aware, a worldwide survey has now opened to understand the effect of COVID-19 on people with PCD. You can sign up for the survey by following this link and we would all encourage you to do so (follow link: To date (as of 22/6/2020) 328 people with PCD had completed this survey. Of these, 12 had symptoms potentially consistent with COVID-19, but only 1 actually had a positive test. This person was over 60 and only had mild symptoms. Only 1 person has required hospital admission, for 7 days, and has recovered well.

Further to this we have asked our Colleagues that lead  the PCD Reference Centres across Europe (as part of the ERN-Lung Network) what they have done about relaxing the lockdown for their patients and what impact, if any, this has had on infection rates. To date we have heard back from 7 Countries, all of whom have relaxed lockdown for their patients between 1 and 5 weeks ago, allowing their children with PCD to return to school when invited. None have seen increases in infection rates in their patients.



Nationally, the Royal College of Paediatrics and Child Health (RCPCH) has advised that most children with PCD can stop shielding at the end of June. For reference, this is also the advice that is being given to children with cystic fibrosis (CF).

We support this position and, as such, advise that most children with PCD can stop shielding at the end of June.

However, there are a small group of children who clinicians remain more concerned about (either due to the severity of their lung disease or due to their other medical issues) and these children will need to remain shielded after June 30th. If you or your child falls into this category, your PCD centre will be in contact with you over the coming week. If you have not heard from us by the end of June, but are concerned that you might fall into this category then please contact your PCD team.

If you have not been told that your child should continue to shield and they have been invited to return to school; if you are comfortable that appropriate social distancing measures are in place at the school, then we would support them returning. However, we will try to support families, in whatever approach they feel is best for their child.

As we move to relax restrictions on children it becomes increasingly important for children and their families to strictly follow Public Health England (PHE) advice on hygiene and social distancing (Staying alert and safe (social distancing) Link:

We fully appreciate that, having been shielding for the last 3 months, relaxing this will be difficult for children and their families. Please contact your PCD teams if you would like to discuss any concerns you have further.



We continue to consider all adults with PCD as ‘extremely vulnerable’ and therefore advise they continue to shield in line with PHE advice (follow this LINK).

However, please note that this now allows for time outside the home and garden for exercise whilst following strict social distancing rules.

As PHE advice on shielding for extremely vulnerable patients is relaxed this advice can be followed unless you are specifically informed otherwise. If you have any questions about this please contact your PCD or respiratory teams.

EDIT 23/06/2020: Advice for adults shielding .pdf now available for download: Shielding summary_ADULTS




As we relax these measures we will continue to monitor this situation across the English PCD centres, across Europe via our Colleagues in the European PCD Reference Centres, and worldwide through the PCD COVID-19 survey. If we see that relaxing these measures leads to an increase in cases then we might need to re-impose shielding for all our patients. We will therefore continue to update our advice appropriately.

If you have questions about this or any other aspect of the management of you or your child’s PCD please contact your PCD centre.

We wish you all the best over the coming months.

The National PCD Leads



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.