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Child and Youth Cystic Fibrosis Clinical Network

This site does not accept referrals or provide clinical advice in response to questions. If you are a New Zealand health professional seeking clinical advice, please use your local clinical pathway. If you are a New Zealand child patient, parent or caregiver seeking clinical advice, please contact your usual doctor. You can read the full site disclaimer here.

Purpose of the Network

The purpose of this Clinical Network (CN) is to support all multidisciplinary teams who work across primary, secondary and tertiary services, to deliver best practice care in the treatment of cystic fibrosis. The network will work closely with Cystic Fibrosis NZ and PSNZ Respiratory Special Interest Group. 

The Clinical Reference Group (CRG) members are:
Dr Julian Vyas, Respiratory Consultant, Starship (Chair)
Jan Tate, Cystic Fibrosis Clinical Nurse Specialist (CNS), Starship
Vivienne Isles, Paediatric CNS, Christchurch
Jane Bollard, CEO, Cystic Fibrosis Association NZ (CFANZ)
Sue Lovelock, Social Worker, CFANZ
Fiona Leighton, Dietitian, Christchurch
Rebecca Scoones, Physiotherapist, Starship
Julie Graves, Dietitian, Tauranga
Rebecca Landreth, Pharmacist, Dunedin
Dr Cass Byrnes, Respiratory Consultant, Starship
Dr Peter McIlroy, Paediatrician, Nelson 

The CRG is supported by:

Mollie Wilson, CEO PSNZ
Karyn Sanson, Project Coordinator Starship

The CRG has approved the Terms of Reference which can be viewed here

The first set of goals will be a phased review of the current clinical guidelines in order to produce current best practice guidelines which are nationally applicable regardless of the centre providing care. These guidelines will be informed by the Standards of Care document produced in conjunction with the Cystic Fibrosis Association NZ and will also support equity of access to specialty and multidisciplinary care for all children and young people with Cystic Fibrosis in New Zealand.

As many clinicians are aware the document is a large one and will be broken down into topics and settings in order to progress it. The first will be infection control in the inpatient and outpatient settings. In addition a parallel workstream will be working on the requirements for patient review at diagnosis, and annually.

If you have ideas or would like to be involved on any of the related workstreams please don't hesitate to make contact with us.

Cystic Fibrosis New Zealand Referral Form

Cystic Fibrosis New Zealand (CFNZ) is a not-for-profit organisation which provides support and advocacy for families living with cystic fibrosis. Please use this link to the referral form to ensure families have full access to the facilities and support provided by CFNZ.

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