1 Communicating with patients and minimising risk

1.1 Communicate with patients, their families and carers, and support their mental health and wellbeing to help alleviate any anxiety and fear they may have about COVID‑19. Signpost to charities (such as the Cystic Fibrosis Trust), support groups (including NHS Volunteer Responders), and UK government guidance on the mental health and wellbeing aspects of COVID-19.

1.2 Be aware that some patients, families or carers may need specialist psychological or social work support in the context of COVID‑19.

1.3 Minimise face-to-face contact to reduce the risk of infection by:

  • using telephone, video or email consultations whenever possible

  • cutting non-essential face-to-face appointments

  • contacting patients via text message, telephone or email

  • using electronic prescriptions rather than paper

  • providing home spirometry and, where appropriate, weighing scales

  • providing facilities to collect samples remotely

  • using different methods to deliver prescriptions and medicines to patients, for example, pharmacy deliveries, postal services, NHS Volunteer Responders, or introducing drive-through pick-up points for medicines.

    However, note that routine childhood vaccinations should continue to take place at the GP surgery.

1.4 Tell patients, their families and carers that they should contact their cystic fibrosis team if they think the patient may have COVID‑19, to ensure that their symptoms are appropriately assessed. They should do this as soon as they have symptoms. They should also contact the NHS 111 online coronavirus service or call NHS 111. In an emergency they should call 999 if the patient is seriously ill.

1.5 Be aware that symptoms of COVID‑19 and pulmonary disease exacerbations may be difficult to differentiate at initial presentation.

Patients not known to have COVID-19

1.6 Tell patients, their families and carers to refer to relevant parts of UK government guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19, until the risks associated with the COVID‑19 pandemic have passed. This includes:

  • advice for other members of the household, noting the recommended shielding support for the patient and the need to follow relevant parts of government advice on social distancing (this differs across the UK) stringently. If this is not possible, for example, if they have a caring role for the patient, they may need to adopt shielding measures for themselves

  • advice for visitors who are providing essential care

  • advice on getting assistance with foods and medicines while shielding

  • support for mental wellbeing. [amended 2 June 2020]

1.7 For patients who still need to attend face-to-face appointments, ensure that existing arrangements to prevent cross-infection include COVID‑19. See the NICE clinical guideline on cystic fibrosis.

1.8 If patients need to attend face-to-face appointments, ask them to go alone if they can, or with no more than 1 family member or carer, to reduce the risk of contracting or spreading infection with COVID‑19. They should avoid using public transport if possible.

Patients known or suspected to have COVID-19

1.9 If a patient has symptoms of COVID‑19 on presentation or admission, follow UK government guidance on investigation and initial clinical management of possible cases. This includes information on testing and isolating patients.

1.10 All healthcare workers involved in receiving, assessing and caring for patients who have known or suspected COVID‑19 should follow UK government guidance on infection prevention and control. This contains information on using personal protective equipment (PPE), including visual and quick guides for putting on and taking off PPE.

1.11 Cystic fibrosis teams should report known or suspected cases of COVID‑19 to the UK cystic fibrosis registry reporting hotline on the same day by emailing registry@cysticfibrosis.org.uk to request a call back.

1.12 Ensure that relevant members of the cystic fibrosis team are involved in decisions about the care of patients with suspected COVID‑19, including escalation of treatment.

1.13 Patients with symptoms of COVID‑19 should carry out airway clearance in a well-ventilated room, separate from other household members if possible, unless the patient needs assistance. This is because sputum generation is a potentially infectious aerosol generating procedure for COVID‑19. Advise other family members not to enter the room until enough time has passed for aerosols to clear: follow UK government guidance on infection prevention and control.

1.14 Explain to patients, their families and carers that when a nebuliser is used to administer an antibiotic, the aerosol comes from the fluid in the nebuliser chamber and will not carry virus particles from the patient. Tell families and carers to use appropriate hand hygiene when helping patients with their nebuliser mask. This is to prevent spread from a contaminated droplet that could be formed if the aerosol coalesces with a contaminated mucous membrane.