Update on Coronavirus for PCD Patients and Families

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: https://pcdsupport.org.uk/covid-19-information/activities-during-shielding/

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

 

25th March 2020

We have created a dedicated page for covid-19 information and resources on our website: https://pcdsupport.org.uk/covid-19-information/

Leeds Hospital have released this activities idea document for young adults and children: Indoor activity ideas March 2020

 

23rd March 2020

Adults and children with PCD fall into a highly vulnerable group from COVID-19 and are advised to ‘shield’ by staying inside for at least 12 weeks. We will update this message with a national statement for people with PCD shortly.

Leeds Hospital have released an update here.
There is more advice about shielding on the BLF website.

 

17th March 2020

Update on Coronavirus by PCD Family Support Group here: Update on Novel Coronavirus outbreak

 

11th March 2020

Q&A from 05/03/2020 by Prof. James Chalmers on the ELF website.

 

5th March 2020

Update from Paediatric PCD team statement on COVID-19 (Coronavirus outbreak):

PCD team covid-19 statement 05.03.2

 

4th March 2020

This information is the advice being given as of 4th March 2020. The Coronavirus (COVID-19) outbreak is a developing situation and this page may not be updated. Please make sure you keep an eye on the NHS website (link below) or contact your doctor for further advice.

We understand that the current outbreak of Coronavirus (COVID-19) is worrying for many people with PCD and their families. It may be useful to know that the current recommendation for PCD patients is to follow the usual advice of sending off a sputum sample if they become more productive, unwell or their sputum darkens. In addition to sending off a sputum sample for testing, PCD patients should start their rescue antibiotics, as would be the normal course of action during an exacerbation.

In addition to this, people with PCD and their families should follow the advice given by the NHS, including ensuring you wash your hands thoroughly and regularly. For continuously updated advice, visit the dedicated NHS section for COVID-19, here. If you are due to travel, you should make sure you look at the UK Government advice given for that country, which can be found here. Families with children may find the BBC Newsround resource useful.

Please contact your GP in the first instance for advice if you are concerned.

 

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.