If you have questions that are not answered in the below please contact our Helpline on firstname.lastname@example.org. While we endeavour to answer all of your questions, please note specific medical questions should be answered by your CF team who have a full understanding of your medical history. We are continuing to update our Q&A page on coronavirus and have also created an FAQ for those with concerns about how coronavirus may impact education, work or finances.
UKCFMA update on COVID-19 guidance
5 November 2020
We now have more experience and understanding of the impact of coronavirus (COVID-19) infection on people with cystic fibrosis (CF) than we had during the first wave of the pandemic. Most adults and children with CF who have had COVID-19 make similar recoveries to people without cystic fibrosis.
Clinicians from 19 countries have identified over a hundred children with CF who have had COVID-19 infection. Very few needed any additional support and most did not require hospital admission. Similarly, approximately 200 adults with CF from around the world have also had COVID-19 infection. The impact of the infection has been less severe than originally feared. Those with low lung function and post-transplant were more likely to be admitted to hospital for care.
With the second lockdown in England, we agree with the advice of the Royal College of Paediatricians and the UK Government that all children with CF should attend school unless advised against by their clinicians. The benefits of education outweigh the risks of COVID-19 for most children with cystic fibrosis. There may be a very small number of children with severe disease and multiple comorbidities who are advised by their clinicians to continue to shield. If you are unsure what you and your child should do, please contact your CF Centre.
The Government advises that adults with CF should work from home if possible during the current lockdown period. Age is an important determinant of outcome after COVID-19 infection. Adults with CF should take all practicable measures to avoid infection. The combination of age, more advanced CF lung disease and other CF-related problems increase the risk of more severe illness and the need for treatment in hospital. Employers cannot compel those with shielding notifications to go into work, but adults with CF who choose to do so should ensure that their workplace has adequate infection control processes in place. If you have concerns about this you should discuss with your local CF centre.
Those in the devolved nations should adhere to the social distancing guidance as set out by their respective governments. Guidance is likely to change in response to the evolving situation, so keep up to date with the specific guidance for your area.
If you have any particular concerns please discuss them with your CF Centre.
UKCFMA update on COVID-19 guidance
30 September 2020
Since the middle of July the number of new cases of COVID-19 (coronavirus infection) across the UK has increased. Despite this, the risk of an individual catching coronavirus remains low and we advise people with cystic fibrosis (CF) continue to follow government guidelines to minimise these risks. The current government guidance is that shielding is paused in areas other than local lockdown, but like all other groups, people with CF should follow strict the social distancing guidance set out by their respective governments.
We are aware of 35 people in the UK with CF who have had an infection with COVID-19 and the majority have had a relatively mild illness. We are also aware that there is increasing information from around the world on how people with CF have been affected by coronavirus. The range of outcomes is similar to that seen in the general population. Age appears to be an important determinant of outcome.
It is important that people with CF and the parents of children with CF discuss their concerns and anxieties with their CF teams. We continue to believe people with CF should have access to personalised advice, from their specialist teams, to help inform their decisions.
Those people with CF who have had a transplant should discuss their concerns and the precautions they should take with their transplant team.
We appreciate the increasing numbers of COVID infections will be causing people with CF and their families increasing concern. We will continue to monitor and contribute to government guidance, engage with specialist commissioners to ensure appropriate access to care for people with CF and work closely with the Cystic Fibrosis Trust and the CF Registry to report new cases of COVID-19 within the CF community.
Your CF team will support you during this pandemic. Please don’t hesitate to contact them to discuss your concerns and seek their advice.
UKCFMA advice on the easing of shielding measures for people with cystic fibrosis and their families
29 June 2020
This statement is an update to advice given on 23 April, 11 May and 15 May.
The number of new cases of COVID-19 (coronavirus infection) continues to decrease across the UK. Track and trace measures are now in place for containing any local outbreak of new infection and the easing of lock down measures in the general population has not resulted in an increase in the number of daily cases to date.
Shielding has successfully minimised the number of COVID-19 infections in people with CF and their families. The now low levels of infection, and the social distancing measures that are being established in schools and workplaces, will enable those who have been shielding to gradually ease the preventive measures they have been taking over the coming weeks.
UK Governments have all now provided updated guidance on shielding. Social distancing measures, according to the latest Government advice, should be maintained during this period as activities outside of the home are increased.
Children and young people have been less severely affected by COVID-19 than older age groups. Many paediatric CF centres are advising that shielding measures can be stopped for the vast majority of their patients. Paediatric CF centres will support families as they come out of shielding and appreciate that this is an unsettling time for many. Your CF team will be able to provide advice about coming out of shielding if you have specific concerns about this.
Adults who will be returning to work should be mindful that their employers are legally obliged to ensure that they return to a safe working environment with robust measures in place to minimise their risk of acquiring infection. The Government has specifically asked employers to be mindful of the necessary working arrangements for those who have been shielding. We suggest making contact with employers well before a planned return date to make sure that social distancing arrangements are put in place within the workplace.
If sensible precautions are maintained, both by people with CF and the wider community, the risk of infection should remain very low. For a small number of people with CF, with severe or unstable disease, the very low risk of catching COVID-19 would be considered too high given the possible effects on their respiratory health. For most, the benefits of returning to school and work with appropriate precautions outweigh these considerations. If you have concerns about shielding, discuss these with your local care team, who can advise on your individual circumstances.
Most CF centres are planning a gradual re-introduction of hospital based out-patient services. However, for the foreseeable future, consultations are likely to be a mix of hospital, virtual web-based and telephone follow-up clinics.
We and the UK CFMA feel it’s really important that people with CF have personalised advice to support their decisions as shielding ends, and this is absolutely the case for people who are post-transplant who will need individual advice from their specialist team about their own levels of potential risk. Please do get in touch with your team with any specific questions you may have.
UKCFMA update on COVID-19 guidance
15 May 2020
This statement is an update to advice given on 23 April and 11 May.
All CF Centres are continuing to report to the National CF Registry all cases of COVID-19 identified in people with cystic fibrosis.
So far COVID-19 has been found in 17 people with CF in the UK. No new cases have been reported in the last few weeks. The youngest was 17 years of age. Fewer than five of the 17 affected are still needing treatment. These findings indicate that people with CF and their families have been very effective in avoiding exposure to the Coronavirus. Shielding continues to be the best way to avoid infection and for the time being we recommend that people with CF continue to shield, as per the current NHS England advice.
Shielding is going to become more challenging for many families as one or more members of their household return to work. In such cases it is important that workers follow the national guidance on the ‘Living with other people’ section of the shielding advice. Thorough hand washing and changing out of work clothes immediately after returning home is particularly important.
If household members are anxious about returning to work, be aware that employers have a statutory responsibility to ensure that all workplaces are as safe as possible for all employees. Please contact your local team for advice and support in making sensible decisions if you have specific concerns about this.
Data from around the world consistently suggests that for the vast majority of children, infection with COVID-19 is less severe than in adults. Whilst this is reassuring, we still know very little about the impact of COVID-19 on children with cystic fibrosis. Although schools are now starting to re-open, until we have further information, the UKCFMA recommends that children with CF should continue with current measures to avoid infection and do not return to school.
This week the Government published advice about whether children and young people who live in a household with someone who has CF should return to school. The advice is that they should only attend if "stringent social distancing can be adhered to and the child or young person is able to understand and follow those instructions". This is going to be difficult to establish and we suggest that decisions are made on a case by case basis after discussion with your local school and CF team.
Remember that regular exercise is a key component to staying well. If you can do this in your home or garden, that is fine, but if you need to go out to do sufficient exercise, you should. If you do go out, ensure this is in as safe a way as possible; do not arrange to meet others, and only go out during quiet periods. Young children should be carefully supervised.
We will continue to monitor all developments closely and will provide an update if there are any changes to these recommendations.
Continue keeping up with all of your treatments. Stay in touch with your CF team and do not hesitate to contact them if you become unwell or think you need to change your treatment.
Statement on the monitoring of data collected through the UK CF Registry about the number of people with CF who have had COVID-19 infection
23 April 2020
This statement is an update to advice given on 24 March
The UKCFMA has been monitoring data collected through the UK CF Registry about the number of people with CF who have had COVID-19 infection.
The data suggests that so far, the UK CF community has been successful in following the specific NHS guidance for shielding and protecting and very few people with CF have suffered from COVID-19 infection.
It is also readily apparent that the UK CF community are being highly responsible in keeping up with their regular treatment to stay as healthy as possible. As a result, there has been a significant reduction in the need to admit people with CF to hospital. This has helped enormously in easing hospital pressures on much needed beds to treat emergency admissions with severe COVID-19 infection across the country.
Some members of CF teams have had to be relocated to other parts of their hospital where there is an acute need to treat patients with COVID-19 and the way in which you are supported by your CF service will have changed considerably. Despite these changes, all CF services will do their best to provide the support you need to keep on top of your CF. In particular it is important that you continue to be in regular contact with your CF team and that you let them now if you become unwell or if you think you need to change your treatment.
Shielding and protecting can be a considerable financial and mental health burden on many families. A limited number of emergency grants are available from the Trust for those in greatest need.
Keeping in touch with friends and family and eating a healthy CF diet might help ease the mental strain of continuing to shield and protect. Finding creative ways to continue to exercise is also important. Ideally this should be in your home or garden. If this is not possible then only exercise outside your home if you are able to do this in isolation. Young children must be strictly supervised so that they do not touch infected surfaces and thorough hand washing is essential immediately after coming back indoors.
Although there might be some easing of government restrictions on social distancing over the coming weeks, shielding and protecting those who are vulnerable will remain in place until the end of June at the earliest. Thank you for the great efforts you have all made so far at this most challenging of times and please continue with all of the things that you have been doing to stay safe.
Statement on how people with cystic fibrosis and their families can help minimise their risk of COVID-19
24 March 2020
This statement is an update to advice given on 17 March following the latest NHS advice given on 22 March.
Current guidance is that all adults and children with cystic fibrosis are in the group of people thought to be extremely vulnerable to severe illness from infection with COVID-19. All people with cystic fibrosis, their families, friends and carers should follow the specific NHS guidance for shielding and protecting.
It is essential that people with cystic fibrosis stay at home at all times and avoid any face-to-face contact for at least the next 12 weeks until further advice is available. Do not attend your local hospital or outpatients without checking with your CF service first. Routine reviews will no longer be conducted face to face.
The government has set a website where people with cystic fibrosis can register for help such as shopping deliveries and any additional care that you might need whilst shielding.
People living in the same home as someone with cystic fibrosis are not required to adopt the same protective shielding measures for themselves, but it is essential that they follow all of the guidance for social distancing. They should only go outside for food, health reasons or for essential work and must stay at least 2 metres apart from all other people at all times.
Anyone who has to enter a home where a person with cystic fibrosis is living must wash their hands with soap and water for at least 20 seconds immediately on arrival and often whilst they are there.
Strictly avoid contact with anyone with a high temperature and/or a new continuous cough. If this is somebody who lives with you then they should try and stay somewhere else.
If you develop a high temperature above 37.8 °C and/or a new continuous cough, get clinical advice using the NHS 111 online coronavirus service and contact your local CF service. If you don’t have internet access call 111. If you are seriously ill call 999.
Keep up with all of your regular treatments, do some exercise and eat well as advised by your CF dietitian.
Keep positive and look after your mental as well as your physical health. The every mind matters website has some useful tips about looking after your mental wellbeing.