Update 18/11/2020:

Update Statement from the National leads of the children and adult PCD centres in England: PCD statement for 17 November 2020

Update 10/07/2020:

We are delighted to share the Q&A session held with our PCD specialists on 27th June at our AGM is now available for download here.

This includes an update on facemasks.

 

Update 09/07/2020:

New shielding guidance update for children and adults: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

The majority of children currently considered extremely clinical vulnerable to COVID-19 will be able to be removed from the shielded patient list: Majority of children no longer need to shield

See also https://www.gov.uk/government/news/majority-of-children-no-longer-need-to-shield

Update 22/06/2020:

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

 

CONTEXT:

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: www.covid19pcd.ispm.ch). 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.

 

ADVICE FOR CHILDREN:

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: https://www.gov.uk/government/publications/staying-alert-and-safe-social-distancing/staying-alert-and-safe-social-distancing).

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.

 

ADVICE FOR ADULTS:

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

 

ONGOING MONITORING:

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

 

 

 

Update 01/06/2020:

 

RESEARCH INTO COVID-19 IN THE PCD COMMUNITY – PLEASE TAKE PART!

We know little about how the new coronavirus disease (COVID-19) affects people with Primary Ciliary Dyskinesia (PCD). Therefore, PCD support groups all over the world asked for a research study which was set up in collaboration with a research team at the Institute for Social and Preventative Medicine (ISPM) at the University of Bern, Switzerland.

COVID-19 infections in people with PCD is a research study that uses anonymous online questionnaires to assess how many people with PCD get COVID-19 and what happens if they catch COVID-19. It is a longitudinal study, so people can join anytime. Participants receive a detailed questionnaire at the start, and then short weekly questionnaires to monitor the progression of symptoms. Ideally, people will join before they have a COVID-19 infection, but can also join at a later time.

To ensure that we address all relevant areas affecting people with PCD, participants are welcome to suggest topics to include in our questionnaires.

Results will be posted online and made available to people with PCD, health professionals and policy makers. Ultimately, the aim is to help improve the health of people with PCD.

Every person with confirmed or suspected PCD can take part. Please read our study info.

The study is supported by PCD Support Groups from all over the world.

 

 

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: 9th July 2020 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.