Advice from Kings College Hospital for Kings’ patients (18/03/2020):
“Please see below information – if we have new information it will be updated on http://www.pnhleeds.co.uk/ and also the Public Health England website (see below):
COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called Coronavirus. Washing hands for 20 seconds is central to the expanded public awareness campaign to prevent and slow the spread of Coronavirus (COVID-19).
The symptoms of Coronavirus are:
a new or persistent cough
high temperature (>37.8)
shortness of breath
These symptoms do not necessarily mean you have the illness. The symptoms are similar to other illnesses that are much more common, such as cold and flu.
Some people will be more vulnerable than others of course, and most patients with PNH are classified as high risk ie vulnerable, however the risk of contracting COVID 19 will be more or less the same as someone else of your age and health status.
The difficulty is that becoming infected may result in an exacerbation of PNH disease and symptoms.
We would advise that you:
Work from home if this is practicable
If you are in job with high public exposure (ie customer facing) Kings College Hospital’s PNH Clinical Nurse Specialist is happy to support you if you need a letter for your employer.
Do not travel overseas and restrict unnecessary travel in the UK
If you develop a temperature, cough, runny nose or other symptom that causes you concern please do follow the Public Health England advice
Let the PNH team know if you become unwell and / or develop symptoms which cause you to believe your PNH symptoms are being exacerbated,
Patients receiving Complement inhibiting medications: eculizumab, Ravulizumab, or other complement inhibiting medications within a trial setting – both injected and by tablet:
Patients with PNH receiving complement inhibiting medications should continue to receive their usual dose of eculizumab/ravulizumab during the current COVID-19 pandemic.
If you receive treatment through a home care provider and you or a member of your household have symptoms and / or are self isolating please do let the PNH team and the home care provider know so that we can plan to implement appropriate protective measures.
Patients with PNH receiving complement inhibiting medications may be at increased risk of illness from coronavirus (COVID-19) and we are advising them to be particularly stringent in these social distancing measures
Patients on complement inhibiting medications remain at risk of meningococcal sepsis and should continue on their prophylactic antibiotics and seek medical advice (presenting with your meningococcal risk card) if they believe they have symptoms suggestive of meningococcal sepsis.
How to avoid catching or spreading coronavirus
wash your hands with soap and water often – do this for at least 20 seconds
always wash your hands when you get home or into work
use hand sanitiser gel if soap and water are not available
cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
put used tissues in the bin straight away and wash your hands afterwards
try to avoid close contact with people who are unwell
touch your eyes, nose or mouth if your hands are not clean
Guidance for all people about possible infection with COVID-19, including when you should seek further medical advice is summarised here.
[The Kings PNH team] is here to help and advise so please do not hesitate to contact [them] – [they] may not be able to get straight back to you so [they] would appreciate you calling ONLY in an emergency and putting URGENT in email headings so [they] can prioritise appropriately"
Please also remember to look after your mental health at this time, please see here for more information
Public Health England has published guidance here.