Cystic Fibrosis Service

The Cystic Fibrosis (CF) Service at Lady Cilento Children’s Hospital (LCCH) is the largest paediatric CF clinic in Australia. We provide comprehensive specialist care for all children diagnosed with CF across Queensland and Northern New South Wales. Presently we care for around 450 children and adolescents from birth until age 18 years. Every year around 20 newly diagnosed babies are referred to LCCH CF clinic from Queensland, interstate and overseas. We have a dedicated multidisciplinary CF team who provide inpatient, outpatient and community liaison services. We also provide outreach services to regional hospitals to help deliver CF care closer to home and are actively involved in the education and training of health professionals who care for children with CF from around the state. We have an established research unit and we are involved in national and international clinical trials of new CF therapies.

The CF telephone service

Our CF nurses provide a telephone service for patients and carers during office hours (Monday to Friday, 8am-4pm).
t: 07 3068 2303

There is also a 24-hour physician on-call service for patients with CF operating out of LCCH.
t: 07 3068 1111

Transition to adult CF services

The paediatric clinic at LCCH has strong links with the adult CF services at The Prince Charles Hospital and the Mater Adult Hospital. As children grow and mature we assist with their transition to adult care by educating teenagers about their health, supporting and encouraging self-care and promoting positive health behaviours. We work closely with the adult CF centres to ensure that the transfer of our adolescent patients across to the adult CF services is timely and seamless.

Research

The CF clinic at LCCH is actively engaged in cystic fibrosis research including national and international clinical trials of new CF treatments.

Clinics

Outreach CF services are available twice yearly throughout Queensland in the following locations:

• Gold Coast
• Cairns
• Townsville
• Rockhampton
• Mackay
• Bundaberg
• Toowoomba
• Hervey Bay

Contact your local hospital in these areas for more information.

Who can access this service?

All children with cystic fibrosis aged from birth to their 18th birthday can access this service.

Catchment area

The Cystic Fibrosis service is available to children living in Queensland and Northern New South Wales. CF services are also available to children with CF living in other areas in accordance with state and national agreements.

Do I need a referral?

You will need a formal referral to access this service.

How do I get a referral?

Referrals are accepted from:

• general practitioners
• paediatric specialists.

Other referral information

Infants newly diagnosed through newborn screening

Babies newly diagnosed with cystic fibrosis through newborn screening (the heel prick test) will automatically receive an appointment at the CF clinic. Parents/carers will be contacted by the CF clinic nurse to arrange their first appointment.

Please bring the following items to your child’s appointment:

• Medicare card
• Private health insurance details
• Pension/healthcare/Department of Veteran Affairs cards

For enquiries regarding referrals or for more information contact us on 07 3068 2300.

Information for health professionals

The Cystic Fibrosis service at LCCH provides specialist multidisciplinary care for all aspects of CF. The CF service provides:

• inpatient and outpatient treatment services
• CF telephone service (office hours) provided by CF nurses
• new diagnosis education, management and support
• school and home visits and community liaison
• outreach clinics
• transition services
• clinical research and clinical trials
• education and training of allied health, nursing and medical professionals in CF care.

Referral instructions

Newly diagnosed patients may be referred to the cystic fibrosis service by contacting the CF specialist nurse via the Lady Cilento Children’s Hospital switchboard during office hours.
t: 07 3068 1111

The CF clinic receives notification of all newly diagnosed infants with CF through the state wide newborn screening program. Parents and carers of newly diagnosed infants are contacted by the CF nurse to arrange an appointment.

Referrals for children with CF who have recently relocated to Queensland are accepted, up to a child’s 16^th birthday. After 16 years of age the patient may be referred to adult services where appropriate. The clinic requires a referral letter from the child’s previous CF specialist and an indefinite referral from their local general practitioner for continuing care.

Patients/carers should be advised to bring the following items to their child’s appointment:

• Medicare card
• List of current medications
• Private health insurance details
• Pension/healthcare/Department of Veteran Affairs cards
• Relevant tests or imaging (as appropriate)

Useful links

Cystic Fibrosis Standards of Care Australia 2008
Australian and New Zealand Nursing Standards of Care for Cystic Fibrosis 2015
Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand 2017
Physiotherapy for Cystic Fibrosis in Australia and New Zealand Clinical Practice Guideline 2016
Cystic Fibrosis Australia

Our team

Research and experience has shown that the best way to care for children with CF is through a multidisciplinary approach. We have a dedicated multidisciplinary CF team made up of specialist cystic fibrosis doctors and nurses, dietitians, physiotherapists, social workers, occupational therapists, and mental health professionals. We also have access to a wide range of paediatric medical and surgical specialists, along with diagnostic and pharmacy services to support our patients in all aspects of CF care.

We believe the best way to care for children with CF is through a strong, cooperative partnership between patients, their families and their CF team. We practice family centred care and aim to tailor CF treatment to suit the individual child and family wherever possible.

Director

Prof Alan Isles

Cystic Fibrosis Service Leads

Professor Alan Isles, Paediatric Respiratory Physician, Director Respiratory and Sleep Medicine
Professor Claire Wainwright, Paediatric Respiratory Physician, Lead Cystic Fibrosis Service
Dr Tonia Douglas, Paediatric Respiratory and Sleep Physician, Lead Cystic Fibrosis Service
Elizabeth Shevill, Nurse Practitioner, Nursing Lead Cystic Fibrosis Service

Senior Medical Officers

Dr Scott Burgess
Professor Anne Chang
Dr Jasneek Chawla
Dr Leanne Gauld
Dr Vikas Goyal
Dr Nitin Kapur
Dr David Kilner
Dr Sadasivam Suresh

Cystic fibrosis specialist nurses

Penny Mitchell, Clinical Nurse Consultant (CNC)
Peta Yarrow, Clinical Nurse Consultant (CNC)
Ruth Hollins, Clinical Nurse (CN)
Nicola Boyle, nurse

Dietitians

Megan Farquar
Sarah Kane

Physiotherapists

Ryan Black
Joanne Leavitt
Rachel Langton

Social workers

Kylie Swyer
Lara Davies

Occupational therapist

Bianca Richards