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Cystic Fibrosis Trust

CF care and COVID-19

We understand many people with CF and their families are concerned about changes to the way their care is delivered, because of the coronavirous (COVID-19) outbreak, and so we asked Dr Keith Brownlee, Director of Policy, Programmes and Support at the Trust, to explore some of the questions you have raised.

A number of people and families living with CF have contacted us about the emerging COVID-19 pandemic and its impact on the care they receive from the NHS.

The NHS is undergoing a major review of resources to prepare for people, including those with CF, who may become acutely ill as a result of COVID-19. This is a rapidly changing and variable situation. Each hospital Trust is addressing the situation differently depending on local circumstances and particular needs.

We are in contact with the UK Cystic Fibrosis Medical Association and individual CF centres and have been reassured that planned changes will ensure that people with CF will continue to have access to safe and appropriate accommodation and care. Invariably this will be different to their usual experience.

How will my CF care change?

This is difficult to predict and depends on local circumstances. If you become increasingly unwell and think that you might need admission, follow the advice on the NHS 111 website. Do not go to your CF centre without first discussing this with them. If you go to hospital and are confirmed as having COVID-19 and are sent home, let your CF centre know. If you have questions relating to your CF, contact your CF centre.

Hospitals are now cancelling routine elective work, in order to prioritise resources for the emerging COVID-19 infection and reduce unnecessary spread. This includes routine clinics and CF teams are being encouraged to support their patients through remote contacts such as central email addresses and dedicated telephone lines (sometimes manned for a set time during the day). 

Most CF centres are planning to deliver more care at home. Routine and some urgent consultations may be undertaken by telephone and skype. If possible courses of treatment and intravenous antibiotics may be delivered at home.

Some clinics have been able to organise virtual consultations for patients who have clinical concerns. Many centres are organising for respiratory cultures to be taken out of hospital and delivered separately to the lab.

Why will more care be delivered at home?

There has been a trend for more people with CF to receive routine care at home. In the current pandemic it makes sense to protect people with CF from possible infection with COVID-19 by reducing travel, minimising meeting other people and spending less time in a hospital environment.

Why has the CF inpatient accommodation been reallocated to COVID-19 care?

There are a number of reasons for this: CF wards typically have a high number of side rooms and other features to reduce the spread of pathogens (bugs); many CF wards are located in central locations with easy access to intensive care and radiology; and it may be appropriate to relocate CF wards away from wards caring for people with COVID 19 infection. We are aware that one CF ward has been relocated to private accommodation with adequate capacity and suitable side rooms but is in a different building to the wards caring for patients with COVID-19.

If I become unwell will I be admitted to my usual CF ward or a COVID-19 ward?

This may vary depending on circumstances however if you have an active COVID-19 infection then it is unlikely you will be admitted to your usual CF ward. It is a priority to reduce the risk of patients with CF acquiring an infection with COVID-19 in the hospital environment.

Will my usual CF clinical team be involved in caring for people with COVID-19?

This will vary, however, it is very likely some of your CF clinical care team will be involved in caring for people with COVID-19. Healthcare professionals are in a vulnerable position and the NHS have clear guidance on measures to avoid infection from patients. You may experience these measures if you require admission for a chest exacerbation, for example. It will be assumed you have COVID-19 until testing is negative, if you have symptoms of persistent cough and/or fever and you will have a very different inpatient experience to usual, being completely isolated.

May I have to go to a different hospital for CF care?

It is possible that you may have to attend a different hospital if your usual hospital is full or cannot assure your safety.

Will I be admitted through Accident and Emergency?

This may be necessary in some hospitals and will be to assure you are admitted to appropriate and safe accommodation. Please only attend A&E if you are unwell, unless an arrangement has been made with your CF team.

During this difficult time, it is important that people with CF and their families receive care that enables them to maintain their health. But it is also important that we all recognise these are extraordinary times and that healthcare workers are being asked to work above and beyond.

CF teams have reported amazing kindness and understanding from their patients, but also (very rarely) intolerance. Let’s all work together through these difficult months and hopefully we can resume normal lives in the not-too-distant future.

As the outbreak develops, we are continuing to update our Q&A page on coronavirus and work with a panel of experts to answer some of the questions from the CF community. We are also keeping up-to-date with the UK CF Medical Association's advice and will continue to keep our page updated.