The National Clinical Programme (NCP) for Cystic Fibrosis have issued the following guidance for people with CF and their families.

National Clinical Programme for Cystic Fibrosis - Guidance for People with Cystic Fibrosis and their Families Regarding COVID-19.

We understand that people with Cystic Fibrosis (PWCF) and their families are very concerned and worried about Covid-19.

In general, PWCF and people with other chronic lung diseases are at increased risk if they develop Covid-19 infection. However this risk is not a “fixed risk” and it will vary from person to person; there is a lot that each PWCF can do to reduce the risk of getting Covid-19 infection and there is a lot that can be done to reduce the danger to your lungs and general health if you get it.

While Covid-19 is a major concern, PWCF remain at risk from other infections and other health issues, that are always a risk for PWCF. To date, most exacerbations/infections in PWCF have not been due to Covid-19 but that could change. As always, PWCF should phone or Email their CF Centre if they become unwell.

We do not know how long the Covid-19 pandemic will last but it could last for several months or more.

It is very important that PWCF get information on Covid-19 from reputable sources and only from reputable sources. It is also very important that information on Cystic Fibrosis only come from reputable sources.

How to reduce the risk of getting Covid-19 infection:

The most important thing that you can do to prevent the spread of infection to yourself and others is to always follow the advice on the HSE website.

The following points are especially important:

• You need to cocoon. PWCF are one of the groups of people who are at risk and who need to cocoon. This means that you must stay at home at all times and avoid any face-to-face contact until further notice. The exception is if you are given a specific appointment time to see your CF team because you are unwell.
• Keep in touch with family and friends over the phone or online if you have access.
• Keep yourself mobile by getting up and moving as much as possible.
• If you have a garden or balcony, spend time outside for fresh air. Do not go outside your home and garden.
• Do not go out shopping - ask neighbours, family or friends to get any shopping or medicine you need. If that is not possible, please find out if a COVID response team is available locally; some local authorities have established COVID response teams to provide essential services to vulnerable/at risk groups.
• Arrange for food or medicine deliveries to be left outside your door (please see supports available here)
• Use the phone if you need to contact your CF team or other services - do not leave your home.
• Do not have any visitors to your home, except for essential carers
• Do not attend any gatherings anywhere, including gatherings with family and friends.
• Wash your hands properly and often for at least 20 seconds. Dry your hands thoroughly afterwards
• Do not touch your eyes, nose, mouth or face
• Cough or sneeze only into your elbow or tissue paper; tissue paper must be discarded safely and hands must be washed afterwards
• If you have someone else living with you, they do not need to follow these cocooning measures. But they should follow HSE physical distancing and hand hygiene advice. Whenever they return to the home, they must immediately wash their hands. They should wash their hands often when they are in your home. You should stay at least 2 metres apart from people you live with, if at all possible, even though this is hard.
• Use your own towel - do not share a towel with anyone else.

How to reduce the danger to your lungs and general health if you get Covid-19 or other infections i.e. how to keep well:

• It is essential to keep taking all your medications and treatments, including nutritional treatments, regularly as prescribed by your CF team. Not taking your treatments regularly will increase your risk if you get Covid-19 or other infections
• Keep your prescriptions up to date. Please phone your pharmacy in advance to arrange  for prescription preparation. Do not go to the pharmacy ; ask the pharmacy to deliver or ask neighbours, family or friends to collect your medications and to leave them outside your door
• Airway clearance and nebulizer treatments should be carried out regularly and,  if at all possible, away from anyone else  in a well-ventilated room
• Keep exercising regularly while maintaining physical isolation; consider contacting your CF team for advice regarding modification of your exercise programme
• Phone or Email the CF Nurse/CF Centre if you become unwell

What to do if you become unwell:

• Phone or Email the CF Nurse/CF Centre if you become unwell and they will advise you what to do. If they give you an appointment, it is very important that you come at the exact time they give you to minimize picking up or passing on infections
• Do not go to the CF Centre unless you have called ahead and have an appointment at a specific time
• You must wear a mask while attending the hospital
• As always, it is very important to follow the advice and instructions from your CF team

Cystic Fibrosis Centres:

Most CF Centres have deferred or cancelled routine outpatient appointments and annual review appointments

Many CF Centres are instead arranging “telephone or virtual clinic appointments” at specific times for some patients

Please contact your CF Centre if you have a scheduled appointment or if you have questions. Contact details for centres can be found here.

Psychological and social work support is available as before, though generally not face to face. Please contact your CF Centre if you need psychological or social work support

Other than routine outpatient appointments and annual review appointments, CF Centres are generally functioning normally. PWCF who become unwell are being assessed and PWCF who need admission are being admitted

The National Clinical Programme for Cystic Fibrosis expects that the healthcare needs of PWCF in Ireland may increase during the COVID pandemic.

Therefore, the staffing and resourcing of CF Centres should be the same as or greater than before Covid-19

Updated 03/04/2020