We understand that you may have many questions on this – like how to manage with younger children, or where you have key workers living within your household, keeping up with regular CF appointments, as well as practical matters like how to get shopping or prescriptions and exercise safely. We are working with experts to answer these questions and we will continue to update these below.
It’s important to remember that there isn’t an answer out there to every question and we know this means the CF community is having to make really difficult decisions. This, coupled with ongoing uncertainty and a situation that is changing really quickly, can be very hard. The Government guidance is aimed at keeping people with CF as safe as possible, but thinking about how you build this guidance into your daily life will bring individual challenges and decisions for everyone in the CF community. Take a look at advice on this topic from paediatric consultant Professor Kevin Southern.
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.
Current Government advice is that all adults and children with CF are in the group of people thought to be extremely vulnerable to severe illness from infection with COVID-19. All people with CF, their families, friends and carers should follow the specific NHS guidance for shielding and protecting. Read more about the latest guidance in the UK CF Medical Association’s latest statement
We have been listening to and gathering your questions on shielding including: household support, financial worries and how people with cystic fibrosis can be best protected at this time. Since the guidance for shielding was released at the end of March, we've been working with the UK Government, Parliamentarians, and companies to improve the support available. As Governments begin releasing their plans for how lockdown could change over the next few months, we’ve written to the Government teams overseeing shielding across the UK alerting them to the concerns and issues that are affecting people with cystic fibrosis. 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.
We have been reviewing the UK Government’s COVID-19 recovery strategy. Shielding is still in place for everyone with CF, and everyone who is in the clinically extremely vulnerable group is strongly advised to stay at home at all times.
The key points from the recovery strategy for people shielding are as follows:
- The government has pledged to continue to offer support for people who are shielding.
- The government will continually assess the risk of COVID-19 and if scientific understanding of the virus changes, the list of those asked to shield will change.
- For those at continued extreme clinical risk, it is likely that shielding will be extended beyond June.
- Vulnerable people will be prioritised for a vaccine: “If a successful vaccine has been developed, it will be critical the Government can deliver it as quickly and as safely as possible, to those who need it most.”
However, there are still lots of unanswered questions – including how those who are shielded, or part of a shielded household, will be supported, practically, socially and financially. We will be adding more information here as soon as we can.
Across the UK, politicians and officials are working together to deliver a 'four nations approach'. However, as Wales, Northern Ireland, and Scotland have devolved power, there are small changes between England, Wales, Northern Ireland, and Scotland. Below are links to specific information about shielding and the support available where you live.
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.
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.
The main symptoms of COVID-19 are a fever and a dry cough. The cough that people with CF experience is often not dry, and 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.
According to Government advice given on 16 March, anyone in your household with a high temperature or fever or new continuous cough should immediately self isolate at home for seven days, but all other individuals in the household will now be asked to 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 for 12 weeks. 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.
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.