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.
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.
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.
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.
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.
Shielding has been tough for many people with CF, and every household has faced individual challenges. Shielding has restarted in some parts of the UK, and advice is in place for the clinically extremely vulnerable across all 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.
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.
With shielding having ended, 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.
Government guidance says you should be very strict in following all of the social distancing guidelines. Although shielding is on pause in some parts of the UK, 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.
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.
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 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 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.
If you have been in contact with someone who has a confirmed case of COVID-19, you should self-isolate for 10 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.
NHS Trusts around the UK are currently making the decision to postpone the opening of any new clinical trials, along with potentially suspending a number of open trials. This will include some trials in cystic fibrosis.
As safety is the top priority while maintaining research integrity, this decision is being made so clinical and research staff can ensure ongoing patient and staff safety. Some research staff will be asked to prioritise delivery of trials researching treatments/vaccines for COVID-19. Other research staff, in addition to clinical staff, will be required to dedicate more time to support the increased demand on the NHS, supporting frontline care arising as a result of the pandemic.
If you are taking part in a clinical trial, you can expect some of the following changes:
Depending on the nature of the trial and trial treatment, the trial may be temporarily stopped – if this happens, your local research team will be in touch to let you know what you have to do
If the trial continues, where possible, scheduled clinical trial visits to the hospital may be replaced with a telephone call. If you have a planned trial visit at the hospital coming up soon you do not have to attend, but please let your local team know who will support and advise you on what to do
If the trial continues, instead of collecting trial medication from your hospital, it may be couriered directly to your home address, or collection can be arranged by a person nominated by you.
Restrictions on travel are still in place (these 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 firstname.lastname@example.org 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.