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: 16 September 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 vaccine rollouts continue, 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.

When will booster vaccinations be available?

Shielding has now stopped in England and remains paused across the rest of the UK. and people However the JCVI has advised that people who have been classed as clinically extremely vulnerable (CEV) will be prioritised for booster vaccinations, which are due to begin in September 2021We are monitoring this information carefully. 

I have had a transplant but have heard that the vaccine may not be as effective. Should I have a booster vaccine when offered?

Yes, there is some evidence that a third dose of vaccine boosts the level of protection in those who did not appear to respond or responded less strongly to two doses.  We wrote to the JCVI ((the expert body advising the government on UK vaccination policy) in June about this study and are pleased that those who are immunocompromised, including people post-transplant and those who live with them, are being offered a third dose of vaccine this autumn.

What is the difference between the booster vaccine and the third dose?

The booster vaccine is an additional dose of the vaccine for all those who received two doses as part of the first phase of the vaccine programme. Most people with CF are likely to have had a good immune response to their first two doses. The booster is intended to protect people against COVID-19 infection for longer. Those in priority groups 1-9, frontline health and social care workers, and those living with people who are immunosuppressed, are eligible for a booster dose, which can be given six months after the second dose.

The Joint Committee on Vaccination and Immunisation (JCVI) recommends that the Pfizer-BioNTech vaccine or a half dose of the Moderna vaccine is used as the booster.

The third dose is an extra dose of the vaccine for anyone who may not have developed a full immune response from their first two vaccine doses. This is usually people who are immunosuppressed, including people who have had a transplant. The third dose is intended to generate a stronger immune response, and can be given eight weeks after the second vaccination. The exact timing may vary and advice on third vaccines for people who are immunosuppressed should be sought from specialist CF teams or transplant teams.

When will children be offered the vaccine, and should I let my child have one?

In September 2021, the JCVI recommended that vaccination for COVID-19 infection should be made available to children with underlying medical conditions including cystic fibrosis in the 12-15 age group.

The Government has since announced that the vaccine will be offered to all children aged 12-15 across the UK. We expect that children with CF and other medical conditions will be prioritised in the roll-out to this age group.

We're awaiting further details on this stage of the vaccine rollout; please contact your CF team if you have any questions.

Read the latest JCVI vaccination guidance (link).

What about changes to shielding?

Shielding has been tough for many people with CF, and every household has faced individual challenges. The shielding programme in England has now ended, and remains paused across the rest of the UK. 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.

I’m post-transplant and feel nervous, should I still shield?

For those in our community who are post-transplant, we advise you discuss your individual situation with your clinical team.

I’m worried about the winter and other viruses such as flu, as well as Covid rates increasing again?

It is important to have the Influenza vaccine as soon as it is offered to you. Similar to the first answer above, it is important to consider your individual circumstances and if in any doubt discuss with your clinical team.

Is it safe to have the flu vaccine at the same time as the COVID booster?

Evidence suggests that the COVID and flu vaccines can be administered safely at the same time. The UK CF Medical Association (CFMA) recommends that people with CF and their families access vaccines for COVID-19 (SARS-CoV2 immunisation) as per the recommendation of their government. They also strongly encourage that they access the influenzae vaccine (flu) as soon as that is available. Flu vaccination works well for people with CF and is recommended each year. This winter, it will be particularly important.

Who should I speak to if I have any concerns about the easing of restrictions?

Talk to your clinical team, they will be able to talk through your concerns and discuss your particular circumstances. You can also get in touch with our Helpline on 0300 373 1000 or via direct message on social media.

Should we continue to wear masks, and in what situations?

Wearing a tight-fitting face covering is no longer a legal requirement; but some hospitals, public transport providers and other organisations are continuing to request that individuals wear masks.

Wearing a mask reduces the risk of spreading COVID-19 to others and there is increasing evidence that it can also reduce your risk of catching respiratory viruses, including COVID-19 too. The CFMA has advised “it seems sensible for people with CF to wear face coverings when on public transport and whenever they feel vulnerable”.

Things to consider:

An individual with CF should consider their individual susceptibility and vulnerability to COVID-19. Factors such as age, transplant status, severity of lung disease, comorbidities, taking immunosuppression should be considered. If in any doubt, please discuss your individual circumstances with your clinical team. 

You should also consider the risk of your immediate environment. There is a greater risk of acquiring a respiratory infection in an enclosed environment, in crowded places, when mixing with people who haven’t been vaccinated, when mixing with people who are not wearing masks, and when there is a high prevalence of viral transmission in your community.

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.

What is the difference between Covid-19 guidelines and cross infection guidelines? Can I meet other people with CF if I continue to socially distance?

For people with cystic fibrosis, cross-infection can be very harmful and poses a particular threat. Cross-infection occurs when one person with cystic fibrosis spreads an infection to another.  Meeting other people with CF or spending time with them socially has a high level of risk and is why people with cystic fibrosis should not meet face to face.

Our full cross-infection guidelines can be found here.

 

Can we work from home still, is there advice for employees/ employers?

Under the Equality Act in England, Scotland and Wales, and the Disability Discrimination Act in Northern Ireland, cystic fibrosis can be classed as a disability (Disability (cysticfibrosis.org.uk)). This means people with CF are entitled to request reasonable adjustments at work, which could include requesting to work from home if you don’t feel safe going into your workplace. We have a detailed employment factsheet (Employment factsheet Jan 2021.pdf (cysticfibrosis.org.uk)) which provides more detail on requesting reasonable adjustments and also includes information to explain CF to employers.

Your clinical team may be able to provide a letter of support explaining your individual CF health and how they feel you would benefit from continuing to work from home.

Should we only meet friends or family who have had both vaccines?

Being fully vaccinated reduces the risk catching COVID-19 and transmitting it to other people but there is still a risk. Some people such as children may not be vaccinated. The decision to meet up with family and friends is a personal decision and should be based on an assessment of your vulnerability and your assessment of the risk of infection.

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 has now ended in England and remains paused across the rest if the UK, you could explain to your employer that someone in your household is vulnerable, and ask 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.

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

You will need to follow latest government guidance on contact with COVID-19. If you are concerned, speak to your CF team

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 can be 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.

Are clinical trials still affected by the pandemic?

The majority of NHS Trusts around the UK are beginning to re-start paused clinical trials as well as open new ones. Whilst COVID-19 trials will continue to be prioritised within the NHS, clinical trials in cystic fibrosis are resuming and will continue to open at select NHS Trusts around the UK over the coming months.

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

My child has CF should they attend school when cases are high?

The data from the UK CF registry suggests that children with CF are not at increased risk from COVID-19 disease compared to other children without CF.  It is important that children are not excluded from school and other activities of childhood. The CFMA recommends that families follow government guidance. 

I have CF and my child is in school, I’m worried they will bring Covid home to me, should they attend school?

A double dose of the Covid vaccine is very effective at reducing hospitalisation or death from COVID-19 and it is important your child goes to school. If in any doubt about your circumstances discuss with your clinical team.

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.

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