Cystic Fibrosis Paediatric and Adult Service
Monash Cystic Fibrosis Paediatric and Adult Service
The Monash Cystic Fibrosis Service was established in 1993, initially caring only for children, with the expansion of an adult service in 1999. Monash CF now provides lifetime care for over 180 adults and children with cystic fibrosis (CF). Every year, an average of 6 - 10 newly diagnosed babies are referred to Monash CF by Genetic Health Services Victoria. Adults with CF transition from our own paediatric service as well as the Royal Children’s Hospital. Our patients come from across Victoria, interstate and overseas. Pregnancy care for women with CF is also provided, along with genetic counselling and pre-natal screening.
Supporting your care
- Many years of research and experience has shown that the most beneficial approach to care for people with cystic fibrosis is by a multidisciplinary team. The Monash CF Multidisciplinary Team comprises of 8 specialist cystic fibrosis physicians, physiotherapists, dietitians, social worker, CF co-ordinator and liaison community support nurse and physiotherapist.
Transitioning through paediatric to adult services
- As children with CF become adults, medical care transitions from paediatric CF physicians to adult physicians. Paediatric services at Monash cover the age from birth to age 19; adult services cover the age group from 19 onwards. At Monash CF, we view transition as a period of change that happens over a long time, from before starting secondary school to adulthood. We seek to support young people through this period of change.
- We work closely with the Monash Obstetric team as well as Monash IVF to provide the best care for adults with CF choosing to have a family.
Working in partnership
- In our experience, the most effective way to manage your cystic fibrosis is through a partnership between you, your family and the CF team. We understand that the treatments required as part of managing cystic fibrosis are sometimes intrusive and time-consuming, and we will aim to individualise your treatment to suit you specifically.
Monash CF Team
- A/Prof David Armstrong, Paediatric Physician Director of Cystic Fibrosis
- Professor Nicholas Freezer, Paediatric Physician
- Dr Daniel Garner Adult Physician
- A/Prof Gillian Nixon, Paediatric Physician
- Dr Marc Theilhaber, Paediatric Physician
- Dr Angela Mc Cullagh, Paediatric Physician
- Dr Christopher Daley, Adult Physician
- Dr Rob Roseby, Paediatric Physician
- Sarah Gliddon, CF Clinic Coordinator
- Kate Johnson RN, CF nurse Coordinator
- Nikki Katz, Senior Physiotherapist (Maternity Leave)
- Jen Corda, Senior Physiotherapist
- Amanda Nichols, Physiotherapist
- Caitlin Miles, Dietitian
- Erin Carr, Dietitian
- Stephanie Chen, Social Worker
- Maureen Vella, Admin Assistant
- Make an appointment: call the CF Care Coordinators on 03 9594 2915 or email firstname.lastname@example.org)
- Get a prescription: email email@example.com
- Where to find us
In an emergency please call 000
- In an emergency, please call 000
- If not acutely unwell, view our Action plan (document link) which provides contact details during and after hours
FAQs - Frequently Asked Questions
How can I get a referral to Monash CF?
Call the CF Care Coordinators on 03 9594 2915 or email firstname.lastname@example.org to discuss your intent to transition or transfer your care. You will need a GP referral to see our doctors and a handover of care from your previous treating team.
How do I get prescriptions filled?
If you require a repeat hospital prescription to be filled, please call or email the Monash pharmacy with your request. They require 2 business days to prepare your script.
For outpatient prescription pick up:
T: (03) 9594 2364 E: email@example.com Hours: Monday to Friday, 9am to 5:15pm, Wednesday to 7pm.
If you require a new script for your medications, please email or call the CF Coordinators with your request. Please note that scripts take time to prepare as patient care takes precedence. Please try to get your repeat prescriptions when you come to clinic. We can arrange to fax scripts to your local pharmacy for medications that you can collect locally to save you the trouble of coming into the hospital.
How do I make an appointment or change one that I can’t make?
Regular outpatient visits are important for optimal CF care. Appointments can be made by calling the CF Care Coordinator on 9594 2915 or Respiratory Reception on 9594 2900.
Your clinic appointment will generally involve a lung function test, measuring weight and height, sputum sample collection and review as required by the members of the team including doctor, nurse, physiotherapist, dietician and social worker.
It is important that you feel free to contact any member of the team between clinic visits if you need to.
Our paediatric clinics run from Monday to Friday but days may vary depending on when your CF physician has clinics. Paediatric CF patients are seen in each respective doctor’s private clinic times, but are bulk-billed.
For our adult clinics, Dr Garner has outpatient clinic on a Monday and Dr Daley on a Thursday. We do not allocate a specific consultant to each patient, but you have a choice as to which clinic day suits you and your other commitments best.
What about infection control?
Preventing the spread of infection from one person to another is always on our mind and for this reason we have special clinic days set aside for patients who carry certain bugs. As part of this process, there is a colour code identifying the group each patient belongs to. A sign showing the colour code for the clinic is displayed on the entrance door to Respiratory and Sleep Medicine. Please be aware of your own “colour” and make sure it is the same as the clinic colour you are booked into. As part of this process, we request a sputum sample or throat swab at each clinic visit. If you have a question about infection control, please discuss this with the CF Coordinator or your doctor.
What if I am becoming unwell?
What is an annual Review and why do I need one?
International guidelines recommend all CF patients, in addition to regular quarterly review, should be provided with an in-depth formal annual review. Monash CF conduct paediatric Medical and Allied Health Annual reviews. If you are an adult patient, you can request an Annual review by contacting firstname.lastname@example.org
Can I become involved in Research?
Yes! Patients and their families are periodically asked whether they would like to participate in research or clinical trials. Talk to your medical consultant if you have a specific question
How do I give feedback about Monash CF?
There are a number of ways you can have provide feedback Monash CF. You may like to speak directly to your CF team members or, if you have a concern, contact the Monash Health Consumer Liaison at http://www.monashhealth.org/page/Concerns_compliments
If you are interested in becoming involved in the Monash CF Consumer Advisory Group or any of the Monash Health Consumer Groups, contact email@example.com or call 9594 6230
Is there extra support I can use in the community?
RDNS (Royal District Nursing Service) has a specialist team, including nurses
and physiotherapists, who are experts in cystic fibrosis care and work closely with the Alfred, Monash and Royal Children’s Hospitals.
The team can assist you by:
- Providing assessment, monitoring, support and ongoing education
- Liaising closely with your hospital care team
- Nursing technical care such as Hospital In The Home
- PORT care and sample collection
- Physiotherapy support with airway clearance, inhalation therapy and exercise regimes
- Support and education around time of diagnosis
- Care at home both before and after a hospital admission
- Visiting children at crèche, kindergarten or school to provide care and educate child care workers and teachers
Who can refer?
Anyone. GPs, hospital staff, family members, and teachers. When possible, we will endeavour to visit at suitable times to accommodate school, work and extracurricular commitments.
For support, information and advice, contact Cystic Fibrosis Victoria http://www.cysticfibrosis.org.au/vic/
or talk to your social worker or CF team about your specific needs
Useful Monash Health Department contact details
- Sleep and Respiratory (reception)
- Lung Function
- Genetic Counselling
- Monash Medical Centre Medihotel Information for guests and their families
- Monash Childrens at Home
- Social Work Department (Wright Street flats accommodation)
- Ward phone numbers and NUM details
Current Monash CF Newsletter
Patient Information (publications)
- Welcome to Monash CF Cystic Fibrosis – Patient Information
- Transition to Monash Cystic Fibrosis – Adult Service
- What should you expect on your child’s first visit to hospital? Cystic Fibrosis patient information for admission
- What should I expect on admission to adult wards? Cystic Fibrosis patient information for admission
- Monash Children’s Hospital Having a Bronchoscopy
- Monash CF Developmental Model of Care
- Risk of Infection
- Monash CF Travelling Tips
- Monash CF School Camp Checklist
- Airway Clearance
- Postive Expiratory Pressure (PEP)
- Pari PEP
- Bubble PEP
- Urinary Incontinence in Cystic Fibrosis
- Dietetics Information
- Social Work Information
- Current Monash CF research
- Journal of Cystic Fibrosis http://www.cysticfibrosisjournal.com/
- Useful websites
- Cystic Fibrosis Australia http://www.cysticfibrosis.org.au/
- Australian Cystic Fibrosis Data Registry http://www.cysticfibrosis.org.au/all/data-registry
- CF Smart (Cystic Fibrosis Education Program for teachers, parents and students) http://cfsmart.org/
- Cystic Fibrosis Victoria http://www.cysticfibrosis.org.au/vic/
- Medicare http://www.humanservices.gov.au/customer/subjects/medicare-services
- Centrelink http://www.humanservices.gov.au/customer/dhs/centrelink
- Royal Childrens Hospital Melbourne
- Alfred Hospital http://www.alfred.org.au/Department.aspx?ID=123
- European Cystic Fibrosis Society https://www.ecfs.eu/
- CF Trust UK http://www.cysticfibrosis.org.uk/
- CF Foundation USA https://www.cff.org/
- RDNS http://www.rdns.com.au/services-we-provide/individuals/services-we-provide/cystic-fibrosis
- PEPTalk online closed Facebook group for people from 13-25 who are impacted by CF http://www.cysticfibrosis.org.au/vic/connecting-up-adolescents
- CF related sexual and reproductive health issues http://spill.org.au/
- Ronald Mc Donald House Monash Clayton https://www.rmhc.org.au/our-programs/houses/monash
- Monash Consumer Advisory Group contact firstname.lastname@example.org or call 9594 6230
- Peer mentoring, Carer support, Conferences/ Events: contact http://www.cysticfibrosis.org.au/vic/ for current local activities
- Donations: http://intranet.southernhealth.org.au/public_affairs/monash_health_foundation.html
- Useful Apps / SMS services?