Advice on Coronavirus (COVID-19) for PID patients

The following gives important advice for the UK PID community concerning Coronavirus (COVID-19) (dated 24th March 2020).

As you may aware the guidance for the general population changed significantly following the Prime Minister’s speech on 23/03/20.  Please do ask all your friends and family to adhere robustly to these important guidelines

Based on a consensus view from immunology specialists, PID patients have been classified into three risk groups:

1.     An extremely vulnerable group (highest at-risk group)
2.     Moderate risk group
3.     Lower risk group with risk equivalent to or only marginally higher than that of the general population

Please note that: Patients with hereditary angioedema (HAE; all types) are not thought to be at increased risk of harm from COVID-19 compared to the general population.

The guidance on who falls into which group is available at:

What you need to do

It is vitally important that all patients should check and confirm the category that they are in.

All patients at a minimum should by now be following the lockdown guidance which already affords a high level of protection by physical isolation from others who are potentially infected.  

Check what to do at

If patients have other high-risk features, the advice for them would be changed to the shielding category - advice detailed below.

Extremely Vulnerable Patients should follow the advice issued by the government for the most vulnerable who need to be shielded. For details please follow the link:

The situation is changing all the time and we advise you to monitor for the latest government advice at:

What is COVID-19?

Coronaviruses are a family of viruses that can cause anything from a common cold to severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS).  COVID-19 is probably, overall, more at the cold and flu-like end of the spectrum of these infections. To date about 80% (80 in 100) of patients recover completely with no treatment.  About 1 in 6 people get difficulty in breathing severe enough to need to attend hospital and about 2% (2 in 100) of people, particularly those with cancer, existing lung or heart problems might die from this infection (

Is it worse than influenza?

Every year the WHO estimates about 3-5 million severe cases of influenza worldwide with 250,000 – 650,000 deaths.  This would suggest that the risk from coronavirus is similar to that of season flu for most people. The main difference is that we have vaccines that limit the spread and infection with influenza, but at present there is no vaccine and no community immunity to COVID-19 to halt spread.

How is COVID-19 spread?

The disease can spread from person to person through small droplets from the nose or mouth which are spread when a person with COVID-19 coughs or exhales. These droplets land on objects and surfaces around the person. Other people then catch COVID-19 by touching these objects or surfaces, then touching their eyes, nose or mouth. People can also catch COVID-19 if they breathe in droplets from a person with COVID-19 who coughs out or exhales droplets.

Reducing the chance of infection and transmission

Since droplets spread the virus, good hand hygiene is the top priority in preventing transmission of COVID-19, like most respiratory viruses.  When out and about, alcohol-based hand-gel can be used to sanitise your hands.  Washing your hands, thoroughly and frequently, with soap and water throughout the day will also help reduce the chance of infection.

Should I wear a mask?

Masks are generally not effective, most people do not have appropriate training for a good fit, they need replacing regularly and there is probably greater risk of contaminating your face from your hands adjusting a mask than the benefit from wearing one.  The exception is a healthcare setting when you are given a mask, shown how to wear it and it is disposed of appropriately.

Am I specifically at risk with my immune deficiency?

Having many immune problems does not specifically predispose you to increased risk of acquiring this type of viral infection; the risk comes from being exposed to it.

Are PID adults or children at greater risk of becoming very sick?

As indicated by the advice above specific PID conditions and major health problems as a consequence of PID, or as well as PID, are the major risk factors alongside increasing age.

Should my partner or I stop going to work?

The plans for isolation and social distancing are to reduce the probability that members of the household will be exposed to COVID-19.  The government advice is that everyone should now reduce unnecessary travel, group gatherings and work from home where possible. This is to reduce exposure to the virus.

I think I have COVID-19, what do I do?

Stay calm; the majority of people do not have severe disease.  Maintain household hygiene measures to protect those around you but isolate yourself as much as possible.

Check your symptoms on 111.NHS.UK/Covid-19 or NHS24 service, if in Scotland, for the latest advice.

For most patients who are following basic measures of rehydration and medicine to lower temperature and who are improving, no further action will be necessary.  If you are not getting better check again with NHS111/24 and then contact your PID centre to see if they need to provide more specific advice.

I have a PID and think a household member has COVID-19, what do I do?

Stay calm; the majority of people do not have severe disease.  Maintain household hygiene measures to protect the person with a PID.  The current advice is to manage the person at risk somewhere else if possible (e.g. they go to a family member).  Where this is not possible e.g. a child with PID looked after by a parent with COVID-19, then minimising contact as much as possible, ensuring hand and household hygiene are key.

Check 111.NHS.UK/Covid-19 or NHS24 for the latest advice.

If your family member is not getting better contact NHS111/NHS24 and follow their advice.

I think I have COVID-19 can I go to my Immunologist for review?

Access online 111.NHS.UK or NHS24 and follow their advice. Contact your immunology centre by phone to update them if you are not getting better. Hospitals now have specific arrangements for receiving patients with suspected COVID-19 and these are outlined on NHS 111/24.  You should not be attending your immunology centre with suspected COVID-19.

The advice is to avoid unnecessary travel, should I go to my regular outpatient appointments?

To reduce the risk to patients of acquiring COVID-19, most hospitals are now reviewing patients wherever possible by telephone.  Some patients will need to attend in person and hospitals are doing all they can to protect those patients and staff from COVID-19.  Specific arrangements for blood tests taken outside of booked clinics are being made in some centres.  Centres may send you a message to actively confirm altered arrangements.  If you have an upcoming appointment and are unsure, contact the clinic booking number for your centre.

What will happen to my immunoglobulin (Ig) infusions?

At present there are no supply issues with IVIG or SCIG.  We are aware that plasma donations will fall at this time, but at present companies believe they have adequate stocks to maintain supply.  Longer prescriptions for patients on home therapy may be needed to ensure you don’t run out, your centre will be able to advise.  For patients having infusions at a hospital facility, it may be possible for some patients to be trained to self-infuse Ig subcutaneously or intravenously at home, depending on the capacity and resources at your Immunology centre.

Some patients will still need to attend the hospital, in which case discuss your transport needs with your centre.  Appropriate arrangements to deliver treatment safely will be made by individual centres.

Keep up to date

It is important for the whole of society to keep themselves informed. Everyone should follow the general advice given by the Government.

You can download this advice as an information sheet here.

This advice has been approved by PID UK Medical Advisory Panel 24th March 2020