Update 20/05/2020:

 

Update Statement from the National leads of the children and adult PCD centres in England 19th May 2020 

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

 

 

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.

 

 

Update 13/05/2020:

Recent updates to COVID-19 rules across all 4 nations may have changed slightly, but for adults and children with PCD the shielding measures are currently still in place. We have been speaking with the PCD specialists across all 4 specialist centres in England and are working hard to review the new guidance as soon as possible. We will let you know of any changes as soon as they are confirmed. We will be recording a Q&A session with some of the doctors in the coming days and are looking forward to sharing this with you. Until then, please continue to follow the shielding advice, look after yourselves and stay safe!

 

Statement from the PCD Centres 27th March 2020:-

Statement from the National leads of the children and adult PCD centres in England

Following discussions between all the National leads for the both the Children’s and Adult PCD centres we advise that:

All patients with PCD should be considered to be ‘extremely vulnerable’ and should therefore follow PHE guidelines for shielding (follow this link)

We are purposefully taking a cautious approach on this as your safety is our main concern. We will continue to monitor all the available international data on the pandemic and will update this advice as appropriate.

We are awaiting clarification regarding food and medicines assistance and will let you know once we have further information.

We appreciate this means that you will need to be isolated in your home and that this might limit your ability to undertake regular exercise.  If this is a major problem, please contact, the PCD Family Support Group who may be able to can provide funding for any equipment which might help e.g. trampolines. Please contact them on chair@pcdsupport.org.uk

The PCD Support Group is also planning activities (such as the Great Gappo entertaining our kids on Facebook live) and suggesting resources to entertain children on our website.

If you have any questions please contact your PCD centres.

We recognise that this is a challenging and concerning time and wish you all the best over the coming months.

The National PCD Leads

 

Activities during Shielding

We know that the idea of staying inside for at least 12 weeks is tough for most people. The PCD Family Support Group committee have been hard at work thinking of activities that will keep people of all ages entertained during this time! We have split these into types of activity and we hope there is something for everyone. If you have further ideas, get in touch via our social media channels or by emailing comms@pcdsupport.org.uk.

Click here for our dedicated activities page.

 

FAQs

Please check out our Covid-19 FAQs page for more information and resources.

 

 

Last Updated: 13th May 2020 @ 08:40 by Katie Dexter

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.