PCD Expert Panel Q&A Session and Covid-19 Update

Fiona Copeland and Lucy Dixon facilitated an expert panel Q&A Session today (20th May 2020) with Dr. Priti Kenia, Dr. Manjith Narayanan, Dr. Daniel Peckham, Dr. Simon Range and Dr. Woolf Walker.  The questions were submitted by our members of the past few weeks.

Prior to the meeting we had agreed with the whole of the PCD Lead Clinicians the following updated advice:-

Update Statement from the National leads of the children and adult PCD centres in England (DATE)

As promised, we continue to review the available data on COVID-19 and, as you will have seen widely reported, we have fortunately found that in children COVID-19 typically only leads to mild symptoms. Further to this, due to sharing of information across our European PCD Network, we have seen data from over a dozen PCD centres around Europe and reassuringly there have no children and only been a couple of adult PCD patients reported to have had COVID positive swabs. Both these adults had mild symptoms not requiring hospital admission.

However, at this stage, we are not clear as to whether the data look reassuring because all PCD patients across Europe are strictly shielding and hence are not being exposed to COVID-19  or that patients with PCD are not at particular risk of severe disease from COVID-19.

Hence, while we understand how challenging maintaining shielding is for patients and their families, until we have more data we advise that all patients with PCD (ADULTS AND CHILDREN) should continue to follow the PHE advice for ‘extremely vulnerable patients’ and continue to shield (follow this LINK).

However, given that the data FOR CHILDREN is particularly reassuring at this stage, if social distancing rules are strictly adhered to, we would be happy for children with PCD to undertake 1 hour of exercise per day outside the home environment. We remain cautious, due to the limited evidence, about widening this advice to our adult PCD patients and therefore advise they continue to strictly shield in the home and garden environment.

As you will also be aware, the Government recently announced plans to get children in years R, 1 and 6 back to school on the 1st June. We would advise against children with PCD in these years returning to school in this first wave until we understand better what effect this will have. This is the case for all children considered extremely vulnerable as per the PHE advice (follow this link). 

For those families with other children, who do not have PCD, but are in these school years ( R, 1 and 6), the PHE advice is that they should only attend school if stringent social distancing can be adhered to and the child or young person is able to understand and follow those instructions. (More details are available through the link above). We would fully support families in whatever approach they felt was best for their own situations on this.

We will continue to regularly review the available data, in particular from countries around Europe that are already moving out of lockdown but also from the UK as the lockdown eases here, and will 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

 

We are extremely grateful to all of the clinicians who have given up their time to help answer some of your questions.  Stay safe.

 

Fiona and Lucy 20th May 2020

 

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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.