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 will update weekly.
On 22 June, the Government announced changes to the shielding programme in England. From Monday 6 July, shielding restrictions in England will be partially eased. People shielding will be able to spend time outdoors in a group of up to six people, while maintaining social distancing. This can include people outside of their own households and could be in a private garden (or outdoor terrace or yard) or public outdoor space.
Also from 6 July, adults who are shielding and who live either alone, or with dependent children (eg those who are single parents), will be able to form a ‘support bubble’ with one other household. Those in the support bubble can be together inside each other’s homes, including overnight stays.
From Saturday 1 August, shielding in England will be ‘paused’. This means that shielding restrictions will no longer be in place for those in the clinically extremely vulnerable group from this date.
People in the clinically extremely vulnerable group will still be advised to stay home as much as possible, and when they do go out, to maintain strict social distancing and hand hygiene. However, the pausing of shielding also means that people on the shielding list will be advised that they can go to work (if they cannot work safely from home), providing their workplace is guaranteed to be ‘COVID secure’. They will also be able to visit shops or other public places, as long as they can maintain social distancing and continue to follow strict hygiene measures.
Due to the relaxation of the shielding guidance, from 1 August, the Government in England will no longer provide food parcels, however the NHS Volunteer Responders scheme will continue to deliver food and medicines where needed. Those who will still need help with shopping, medication or essential supplies are advised to call 0808 196 3646 (8am to 8pm).
The Government has advised that priority online shopping for seven main supermarkets has been guaranteed beyond the end of July for those already signed up. Those who have not yet registered as vulnerable should register by 17 July.
The Government has pledged to write to all those on the clinically extremely vulnerable list to formally advise of these changes, and the NHS will retain the shielded list in order to communicate any further changes to shielding guidance, which will be reviewed again at the end of July.
Following updated guidance from the Royal College of Paediatric and Child Health (RCPCH), the Government has confirmed that after 1 August 2020 most children and young people who had been identified as ‘clinically extremely vulnerable’ will not be advised to shield again in the future if there is another shielding period. The decision to come off the shielding list will be made with your child’s CF team – they will contact you over the summer to discuss this.
We have updated our website with further information on what the pause in shielding means for you at work and at school.
On 18 June the Health Minister in Northern Ireland announced that from 31 July, subject to the rate of community transmission continuing to be low, people in Northern Ireland will no longer need to shield. They should follow the same guidance and precautions as those considered to be generally vulnerable. Read the latest shielding guidance from the Northern Ireland Government.
Shielding is still in place CF in in Wales until 16 August, and this date is being kept under review. The Welsh Government's guidance on shielding was last updated on 29 June.
The Scottish Government has announced that they hope to pause shielding on 31 July. This remains under review and they will provide more information in the next few weeks. If and when shielding is paused, weekly food parcels will stop. Further information will be provided about other support services, and the text message information service will remain in place.
On 2 July, the Scottish Government announced they would be following the Royal College of Paediatrics and Child Health (RCPCH) guidance, which suggests the majority of children and young people may no longer need to shield. Families in Scotland will receive a letter about this soon and will be contacted by their clinical teams for an individual discussion in the coming weeks. The Scottish Government have confirmed that "No one will be removed from the shielding list before discussions are held between children, parents and clinician." This reflects lots of comments we’ve heard from the CF community – that you want to work with your child’s CF team to find the right balance of risk and ‘normal life’, which works for you, your child, their individual CF health and your family’s circumstances. The RCPCH guidance is designed to support paediatric teams to advise families in their care.
The Scottish Government has also announced further changes to shielding guidance from 10 July, Further information is expected and people who are shielding will receive letters about this.
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.
Government guidance says you should be very strict in following all of the social distancing guidelines. We’d suggest explaining to your employer that someone in your household is extremely vulnerable and is shielding, 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.
In their advice, ‘How can you get assistance with foods and medicines if you are shielding?’ the Government has stated that they are helping pharmacies to deliver prescriptions. Prescriptions will continue to cover the same length of time as usual. If you do not currently have your prescriptions collected or delivered, you can arrange this by:
- Asking someone you know to pick up your prescription from the local pharmacy (if possible, this is the best option).
- Contacting your pharmacy to ask them to help you find a volunteer (who will have been ID checked) to deliver it to you.
- You may also need to arrange for collection or delivery of hospital specialist medication that is prescribed to you by your hospital care team.
If you receive support from health and social care organisations, for example if you have care provided for you through the local authority or health care system, this will continue as normal. Your health or social care provider will be asked to take additional precautions to make sure that you are protected. The advice for formal carers is included in the home care provision.
Repeat prescription services
Below are some providers of repeat prescriptions. All you have to do is provide your NHS number and then list your medications from your prescription or scan the barcodes on the packages. This list is then confirmed with your GP for delivery to your home. Due to demand this may currently take two weeks so apply as soon as possible.
Orkambi and Symkevi medication
If getting monthly deliveries of Kalydeco, Orkambi or Symkevi is problematic, you can contact your CF team about the possibility of switching to a two-monthly prescription. National agreements do allow two months of these drugs to be provided at a time, although this can be dependent on the local homecare provider.
Shielding has been tough for many people with CF, and every household has faced their own individual challenges. Some people may feel that they want to go back to work, or have children who want to go back to school, while others won't. 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 decision 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. There is little scientific evidence to support the use of face masks to limit the spread of COVID-19.
At the moment, the UK CF Medical Association (CMFA) has advised that people with CF should continue to follow shielding guidance. However, with more people who’ve been shielding now going out for walks, the CFMA agree there is no harm in wearing a mask if it makes the individual feel more comfortable.
The Government has recently stated that people in England must wear face coverings when using public transport, and when in hospital as a visitor or outpatient.
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.
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.
According to Government advice (updated on 1 June), anyone in your household with a high temperature, new continuous cough or loss of, or change in, normal sense of taste or smell should immediately self-isolate at home for seven days, and all other individuals in the household should self-isolate for 14 days from that moment as well. If any member of the household develops symptoms they must isolate for seven days from the start of symptoms. 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, 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.
The government has advised that unpaid carers are considered to be ‘essential workers’ so should be eligible for testing. Find more information and apply for a test.
You can also find advice and check your symptoms through the NHS 111 online service.
The Government’s general social distancing guidance states that children can move between homes but care should be taken to maintain social distancing during ‘handover’ when dropping off/collecting a child, but there is no specific guidance for children in the shielded group, who have been advised to stay at home. There is no clear answer to what happens for children in the shielded group with separated parents, mainly because every family is different and it’s very difficult to provide advice to cover all situations. All family circumstances and contact arrangements are different, so there is no easy answer to this and ultimately families must work together to make decisions in the best interests of their children. If you need further advice on this, please speak to your child’s CF team.
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 do vary according to where you are in the UK and where you are thinking of travelling to), and shielding guidance remains in place until the end/review dates specified by your own devolved government. However, we know there has been a lot in the news about holiday destinations planning to open up in the months ahead and it’s understandable that people are thinking about whether they will be able to get away for a break this summer.
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 email@example.com 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.