Many people in the CF community have had questions and concerns about how the COVID-19 pandemic will impact on their CF care. Each hospital Trust is addressing the situation differently depending on local circumstances and particular needs, and we continue to liaise with the NHS and the UK Cystic Fibrosis Medical Association to ensure that plans are in place for anyone with cystic fibrosis who becomes acutely unwell with coronavirus.
NICE guidance for CF care
To support clinical teams and management, the National Institute for Health and Care Excellence (NICE) have created guidelines about CF care. The guideline highlights government guidance on shielding and protecting people with CF, and recommends several ways in which care can be provided to minimise face-to-face contact and visits to hospital. It gives recommendations for patients with possible COVID-19 and says that members of the individual’s CF team should be involved in decisions about their care, including escalation of treatment.
We are in contact with the UKCFMA 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.
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.
This is difficult to predict and depends on local circumstances. Hospitals have now cancelled most routine appointments, in order to prioritise resources for the emerging COVID-19 infection and reduce unnecessary spread. This includes routine clinics.
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. 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.
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.
If your medical team advise that you need to provide a biological sample, NHS Transport Volunteers are available in England to collect them from a person’s home and deliver it to hospitals. You or your CF team can make a request for this by calling 0808 196 3646. A range of other smaller volunteer schemes are available in other parts of the UK, which offer a similar service, contact your CF team for further advice.
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
- It may be appropriate to relocate CF wards away from wards caring for people with COVID-19 infection.
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.
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 has 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 dry cough and/or fever and you will have a very different inpatient experience to usual, being completely isolated.
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
It is possible that you may have to attend a different hospital if your usual hospital is full or cannot assure your safety.
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.
The roll out of Symkevi and Orkambi continues despite the disruption to the NHS caused by COVID-19. We are aware that CF centres and commissioners are working hard to start all eligible patients as soon as possible.