3 Modifications to usual care and service delivery
3.1 Think about how to modify usual care to reduce patient exposure to COVID‑19 and make best use of resources (for example, workforce, facilities and equipment).
3.2 Specialist cystic fibrosis centres should maintain contact with network and outreach cystic fibrosis clinics using telephone or video consultations and meetings.
3.4 Day-case facilities may be necessary for procedures such as administering first doses of intravenous antibiotics for courses to be delivered at home and flushing totally implantable intravenous devices. Flushing frequency may be reduced from usual practice. If no alternative is possible, think about carrying out a home visit.
3.5 Ensure that sufficient clinical expertise and capacity remains within the cystic fibrosis team so that patients have the support they need, and their care can be safely managed out of hospital as much as possible.
3.6 When modifying individual patients' treatment plans:
take their clinical circumstances and preferences into account
involve all relevant members of the multidisciplinary team in the decision
record the reasoning behind each decision.
3.7 Discuss the risks and benefits of changing treatment plans with patients, their families and carers.
3.8 Only carry out lung function tests in hospital if the results will have a direct impact on patient care. Use home spirometry if possible.
3.9 Be aware that patients with cystic fibrosis can still access cystic fibrosis transmembrane conductance regulator (CFTR) therapies under the NHS England policy statement for these drugs (refer to devolved national policies if appropriate). Note that the assessments and data collection frequencies recommended in the data collection agreement are the ideal, and the minimum requirement is annual assessment and reporting. Conduct liver function testing and eye monitoring only when clinically essential.
3.10 Reduce the burden on frontline staff by following advice from NHS England and NHS Improvement about which data are not required (for example, the cystic fibrosis quality dashboard quarterly returns), and think about de-prioritising updating the cystic fibrosis registry (although note that centres will still need to meet the deadline of 31 January 2021).
3.11 Be aware that NHS England and NHS Improvement and NHS Blood and Transplant are working closely to enable limited access to transplants where this is feasible. However, given the severe capacity constraints because of managing the COVID‑19 pandemic, the selection of patients from the waiting list for transplant will be considered on a case-by-case basis only. Referrals will only be seen in exceptional circumstances.
3.12 Defer the transition of young people to adult services until the pressures associated with the COVID‑19 pandemic have passed.