Updated UK standards for the nursing management of cystic fibrosis published

Cystic fibrosis nurse specialists provide care for people with cystic fibrosis throughout their lives as part of the CF multidisciplinary team. Nursing is a partnership between people with CF, their families/carers, and nurses. The role of the CF CNS includes advocacy, clinical management, education, support and advice, and research.

The CF CNSs are my first point of contact. I feel I can discuss anything with them about my CF care. The CF CNS is a crucial conduit to all the other healthcare professionals at a hospital/clinic. The CF CNSs are key to maintaining my health; I am grateful for the care of the CF CNS, keeping me as well as possible.

– Peter, who has CF

Why are the new guidelines important?

The original guidelines were published over 20 years ago. Not only have medical advancements since then led to changes in treatment, but nursing care itself has also evolved to focus on promoting person-centred care. The new guidelines reflect these changes and assist CF specialist nurses (and CF teams) in navigating the multiple, complex challenges of CF care. They also recognise the evolving role of the CF specialist nurse and offer guidance and support for advanced nursing roles.

Who wrote the new guidelines?

A working group comprising both paediatric and adult CF nursing professionals from the UK and Ireland (Cystic Fibrosis Nursing Association, CFNA) conducted a comprehensive appraisal of the 2001 guidelines and created a revised document. The group wanted to ensure the voices of people with CF were heard throughout the document. Using methods of co-production, they sought feedback from the CF community about the role of the CF specialist nurse, and this feedback is included throughout the document. The draft guidelines were circulated to expert clinicians and patient/parent representatives from Cystic Fibrosis Trust’s Clinical Advisory Group (CAG) and were developed with support from Cystic Fibrosis Trust.

What’s in the guidelines?

The new guidelines reflect modern advancements in treatment and the role of the CF specialist nurse in CF care. New sections include:

• infection prevention and control
• advanced practice, including non-medical prescribing
• transplant
• adherence/concordance
• non-invasive ventilation
• family planning, pregnancy, perimenopause, and menopause
• lifestyle
• research
• safeguarding
• shared care.

The guidelines reinforce how the CF specialist nurse is pivotal to the care experience of people with CF and aim to support them in delivering the highest standard of care throughout the lives of people with CF.

Download: Standards for the nursing management of cystic fibrosis