Coronavirus updates and FAQs

Take a look at some of the commonly asked questions about coronavirus (COVID-19) and how it affects people with cystic fibrosis (CF) and their families. 

Last updated: 9 April 2021

We’re doing everything we can to give you information to support you in making decisions and staying as safe as possible. Sometimes it helps to talk this through with someone – our friendly and expert Helpline team is on hand to listen and support you.

Are people with CF at an increased risk of COVID-19?

The numbers of people with CF who have been diagnosed with COVID-19 are currently relatively low. This makes it difficult to draw conclusions about the impact of the infection on people with CF, including those who have received a transplant. The UK Cystic Fibrosis Registry is part of an ongoing global collaboration to monitor cases of COVID-19 in people with cystic fibrosis. In those who are well it may be a mild illness, but people with significant chest problems are likely to be at risk of more severe illness.

How many people with CF have had COVID-19?

The UK CF Registry is closely monitoring cases of COVID-19 in people with cystic fibrosis. Take a look at the current UK statistics, which we update every two weeks.

What is the latest Government guidance on for the clinically extremely vulnerable?

All adults with CF in the UK are currently defined as clinically extremely vulnerable by the Government. The majority of children with CF are no longer defined as clinically extremely vulnerable – if you’re not sure if this applies to your child, please speak to your CF team.

Government guidance for the clinically extremely vulnerable varies around the UK, and may change if governments decide to put in place new restrictions. You can find the latest government guidance for where you live here.

UK CF Medical Association statement on changes to shielding guidance

The UK CF Medical Association’s latest statement provides an update on COVID-19 guidance.

The COVID-19 vaccine and CF – where can I find more information?

As vaccines for COVID-19 go through the regulatory approvals process and begin to roll-out, we know many of you have questions. We have worked with experts to provide some answers to your questions here. The UK CF Medical Association also highlighted the importance of vaccines in their latest statement.

We put your questions about the vaccine to Professor Calum Semple, a member of the Scientific Advisory Group for Emergencies, and the UK Cystic Fibrosis Medical Association’s Professor Kevin Southern. Watch the video.

What about changes to shielding?

Shielding has been tough for many people with CF, and every household has faced individual challenges. Shielding ends in England and Wales on 1 April 2021. Shielding is due to stop in Northern Ireland and Scotland later in April. However, guidance for the clinically extremely vulnerable will remain in place and varies by nation. We have tried to provide answers to some of the frequently asked questions about coping with changes to shielding. As ever, we encourage you to speak to your CF team so that you can make the right decisions for you and your family.

Should I wear a face mask when I leave the house?

There has been a lot of information in the media about use of face masks and governments have also talked about their role in easing restrictions as the coronavirus (COVID-19) pandemic changes. The scientific evidence emerging is becoming more supportive towards the use of face masks to limit the spread of COVID-19.

People with CF are advised to make an individual decision on whether they feel comfortable wearing a mask. Some people have found they experience breathing difficulties and others have found it okay to wear. We recommend doing what makes you feel most comfortable, but if not wearing a mask try to ensure you are socially distancing and maintaining good hand hygiene.

Across the UK, face coverings are mandatory in certain settings, although there are exemptions for people with medical conditions – see our face mask FAQs for further details. You can check government websites where you live in the UK for more information on where and when people can be expected to wear face coverings.

We have put together some FAQs about face masks to help you to make a choice about whether to use face masks if you leave the house.

I live in the same household as someone with CF and I need to go out of the house to work. What can I do to protect the person with CF?

Although shielding is stopping in April (on different dates depending on where you live), you could explain to your employer that someone in your household is extremely clinically vulnerable, and asking if there are ways they can support you with social distancing. For example:

  • Can they change your role so you are working away from others?
  • Can they provide protective equipment?
  • Can they change your role so you are not customer/patient facing?

Protecting those who are most vulnerable is a role for all of us, and we hope employers will be understanding of this. Read about your employment rights in our information about finance and welfare.

There are some things you can do when you return from work and before having any contact with others in the house. This advice was provided by a CF clinician:

  • Remove your shoes, and leave them outside or by the door. Leave any bags and coats by the door.
  • Avoid touching light switches, door handles etc as you come in if possible.
  • Wash your hands and lower arms with soap, for at least 20 seconds.
  • Remove your clothes and put them in the wash.
  • Wipe your phone, wallet (and any door handles or light switches you had to touch on your way in) with an anti-viral wipe.
  • Have a shower with soap, and wash your hair.
  • Put on clean clothes.

Should I still attend my CF centre appointments?

You should not attend your local hospital or outpatient facility without checking with your CF service first. Routine reviews will no longer be conducted face to face. Please contact your CF team to find out how this will apply to you or your child. Find out more about how this will affect your CF care.

How should I access medicines?

Across the UK, pharmacies are open. If you feel going to the pharmacy is too risky, you could ask friends, family members, carers or volunteers (eg via the NHS Volunteer Responders scheme) to collect medicines for you. If these options are not available, you can contact your pharmacy to inform them that you are clinically extremely vulnerable and arrange delivery of your medicines free of charge.

The symptoms of COVID-19 are similar to CF, so how would I know if I had it?

The main symptoms of COVID-19 are a fever, a new continuous cough and a loss of, or change in, normal sense of taste or smell (anosmia). It is is unusual for people with CF to experience a fever as part of their normal CF symptoms. However, there is still a lot of cross over between CF symptoms and symptoms of COVID-19, so if you are worried please use NHS 111’s online COVID-19 service.

It is important to keep up with your treatment so that you stay well. Follow all of the preventive measures outlined by the UK CF Medical Association. If you have any change in respiratory symptoms, contact your local CF team.

If you or anyone in your household has symptoms, you should follow government guidance on self-isolation and testing. If this happens to you, let your CF team know as they will want to assess whether you should start an oral antibiotic. Follow NHS 111 advice according to how unwell you are feeling.

What should I do if I think I have been in contact with someone with COVID-19?

If you have been in contact with someone who has a confirmed case of COVID-19, you should self-isolate for 14 days, and let your clinical team know so that they can monitor you closely. If you start having symptoms, use NHS 111's online COVID-19 service and let your CF team know. If you start having symptoms, everyone else in your household will also need to self-isolate for 14 days.

Are clinical trials still affected by the pandemic?

The majority of NHS Trusts around the UK are now in a position to re-open paused clinical trials as well as start new ones.  However, NHS Trusts opening new clinical trials, including those in cystic fibrosis, will now have to follow a process to categorise new trials into levels of prioritisation. COVID-19 vaccine trials will continue to be prioritised, alongside trials addressing an urgent treatment, such as some of those in cystic fibrosis. Lower priority trials may still open at NHS Trusts, however they may take longer to open as Trust recourses are focused on setting-up and running the higher priority trials.

For more information on your local cystic fibrosis clinical trial activity, please contact your CF team or regional CF Trial Coordinator.

I have a holiday booked – is it going to be safe for people with CF to travel?

Restrictions on travel are still in place (these do vary according to where you are in the UK and where you are thinking of travelling to).

If you are thinking of going on or booking a trip, please do discuss this with your CF team.

If you have a holiday booked, and need advice on your consumer rights if you want to or need to cancel, there is some useful information here:

We are continuing to monitor the situation and are taking advice from the UKCFMA, government health authorities and the NHS. As things develop, we will provide as much information as we can. If you have a question which isn’t answered here please contact our Helpline on helpline@cysticfibrosis.org.uk and we will come back to you as soon as we can. For issues relating to your CF care we recommend speaking directly to your CF team and if you have any direct concerns about developing COVID-19 please use NHS 111's online COVID-19 service.

Financial support and welfare advice

Resources and information from the Trust, as well as useful external websites and services, that can provide financial and welfare support to families living with cystic fibrosis during this time.

The impact on your CF care

Information on how the COVID-19 outbreak could affect your routine CF care, what to do if you contract COVID-19 and other frequently asked questions.

Mental and physical health

Helpful advice on how you can maintain your emotional and physical wellbeing through a range of activities.

Your donation will make a difference:

Select amount