We have all been living with the COVID-19 pandemic since early 2020. COVID-19 is illness caused by infection with the SARS-Cov-2 coronavirus. Symptoms of COVID-19 can be variable, ranging from no symptoms to very severe illness. The widespread availability of vaccination, combined with improved treatments for severe COVID-19, now means that severe disease and adverse outcomes are much less common.
You will have had a lot of information about COVID-19. Some of this can be confusing, and it has frequently changed over the last couple of years. There is also a lot of misinformation, and it is important that you use reliable sources of information when making choices that affect yourself and your family. If you are uncertain, worried, or cannot find the information you require - PCD Support UK recommends that you discuss any questions or concerns that you may have with your health-care providers or PCD clinical teams.
Sources of COVID-19 Information
Information about COVID-19 is constantly changing as we learn more about the disease, and sources of information can rapidly go out of date. The National rules and laws relating to COVID-19 have also undergone significant change during the pandemic, and it is always best to check the latest information.
UK Government advice relating to all aspects of COVID-19 can be found by navigating from this link: www.gov.uk/coronavirus
NHS site on COVID-19, including information on Long Covid: NHS Website Link
Information and evidence for COVID-19 vaccination: Government website for information and evidence on COVID-19 Vacciations
Frequently Asked Questions about COVID-19
There is no strong evidence that people with PCD or other lung diseases are more likely to become infected with SARS-Cov-2 virus compared to others in the population.
This is a complex question to answer. Early on in the pandemic people with PCD were put in the Clinically Extremely Vulnerable (CEV) group and advised to ‘shield’ to reduce their risk of getting COVID-19. This was because there was concern that people with PCD would be much more seriously affected if they developed COVID-19. Thankfully this has not proven to be the case, with most people with PCD who get COVID-19 having a good outcome. The CEV designation is no longer used in the UK Government COVID-19 response.
An international study group has tracked COVID-19 infection in people with PCD and has published research on this topic. Visit their website by clicking the following hyperlink: https://covid19pcd.ispm.ch/en/
Most of the population are expected to be infected with SARS-Cov-2 virus at some point. For most people this will cause a relatively mild illness, especially if you have been fully vaccinated. COVID-19 symptoms can be very similar to other viral infections, and feel like a standard ‘flare-up’ or ‘exacerbation’ that many people with PCD experience. Free testing for COVID-19 in the community is no longer available for most people, although it is possible to purchase Lateral Flow testing kits on-line or from Pharmacies. Advice on simple measure you can take if you think you may have COVID-19 is available on the ‘Sources of Information’ links, including advice on not passing it on to others.
COVID-19 like other viral infections can often cause an ‘exacerbation’ or ‘flare-up’ in people with PCD. Although antibiotics do not treat viral infections, it may be appropriate to take antibiotics to help prevent an additional bacterial infection. If you are concerned, discuss this with your healthcare team as it may be sensible to have a standby course of your usual antibiotic at home to use in this scenario.
If a person with PCD developed COVID-19 pneumonia and was admitted to hospital, they would be treated with the standard treatments offered to all patients.
Some patients, who acquire COVID-19 when they are in hospital for another problem, may be eligible for antiviral or other preventative therapy directed against COVID-19. This is aimed at preventing vulnerable patients developing COVID-19 pneumonia. Some people with PCD with more severe disease may be eligible for this.
Some patient groups, particularly those with impaired immune systems, may be eligible for antiviral or other preventative therapy if they develop COVID-19 in the community. The list of patient groups eligible for these treatments can be found here (this may be subject to change): https://www.nhs.uk/conditions/coronavirus-covid-19/self-care-and-treatments-for-coronavirus/treatments-for-coronavirus/
If you are in one of these groups you should have had notification of this with instructions of how to access the treatments. Currently people with PCD and no other specific indication are not one of the eligible groups. Some treatments for COVID-19 are age restricted. If you have questions about your specific case, please talk to your healthcare teams and/or your GP.
Mask wearing is no longer a legal requirement in most UK settings, however many hospitals currently require the wearing of a surgical mask in clinical areas. Surgical masks and cloth face coverings provide a reduction in dissemination of SARS-Cov-2 virus by the wearer, but provide little protection for the wearer against virus aerosol transmission – the main route of spread of the SARS-Cov-2 virus. Wearing a properly fitted FFP2 (N95) or FFP3 rated mask provides good protection to the wearer from SARS-Cov-2 virus.
Vaccination against COVID-19 is a personal choice but PCD Support UK endorses UK Government advice that eligible people should take up vaccination to best protect themselves against severe COVID-19 infection.
Most adults and children with PCD will by now have had COVID-19 vaccine. A further programme of booster vaccination occurred in late 2022, and all people with PCD aged 5 or greater were included in this recommendation.
Information and evidence for COVID-19 vaccination, as well as the latest vaccination schedules can be found at https://www.gov.uk/government/publications/covid-19-the-green-book-chapter-14a
Advice is based on UK guidance Nov 2022