UKCFC test

In these uncertain times you might be seen at a hospital where staff aren’t aware of your treatments or care. We advise that you download this card and fill in your personal details and the details of your CF team. You can do this on your phone, tablet or computer and save it somewhere that you can find it easily, or print it off, fill it in by hand and keep it in your wallet. You can then present it if you are admitted to hospital.

Download the card

This card was designed together with the UKCFMA. While it may be particularly useful during the current situation, we hope that this card will prove useful in general to people with CF and their families whenever they are accessing care outside of their usual CF centre.

Current Government advice 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. Read more about the latest guidance in the UK CF Medical Association’s latest statement.

We still don’t know how infection with COVID-19 will affect people with CF, though we have enquired internationally. 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.

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 get in contact with 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.

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 7 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 7 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 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 sympathetic and 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

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 front-line 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, trial medication may be couriered directly to your home address, or collection can be arranged by a person nominated by yourself.