Cystic Fibrosis Paediatric and Adult Service
Monash Health Cystic Fibrosis Paediatric and Adult Service
The Monash Health 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 200 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, psychologist, physiotherapists, dietitians, social worker, CF co-ordinator and liaison community support (Royal District Nursing Service) 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 until their mid-20's and beyond.
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.
- A/Prof David Armstrong, Paediatric Physician, Director of Monash Cystic Fibrosis Service
- Dr Christopher Daley, Adult Physician and Head of Adult Monash Cystic Fibrosis service
- Professor Nicholas Freezer, Paediatric Physician
- Dr Angela Mc Cullagh, Paediatric Physician
- A/Prof Gillian Nixon, Paediatric Physician
- Dr Michael Pallin, Adult Physician
- Dr Rob Roseby, Paediatric Physician
- Dr Marc Theilhaber, Paediatric Physician
- Dr Hawran Baldey, Clinical Psychologist
- Nikki Katz, CF Clinic Coordinator
- Kate Johnson, Clinical Nurse Consultant Coordinator
- Kathryn Gotterson, Clinical Nurse Consultant Coordinator
- Jane Willis, Clinical Nurse Consultant Coordinator
- Erin Carr, Dietitian
- Caitlin Miles, Dietitian
- Stephanie Chen, Social Worker
- Jen Corda, Physiotherapist
- Amanda Nichols, Physiotherapist
- Maureen Vella, Administration
- Marilyn Wilkinson, Administration
- In an emergency, please call 000
- If not acutely unwell, view our Action plan below which provides contact details during and after hours
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. Please note there is no outpatient pharmacy service on weekends and public holidays.
If you are an inpatient, your medications will be dispensed by pharmacy on the day of discharge.
If you require a new script for your medications, please email firstname.lastname@example.org with the following information:
- Patient name
- Weight (for paediatric patients only)
- Name of medication
- Dose and how often
- Where script is to be sent (for example, Monash pharmacy, local pharmacy or mailed to home address)
Please note that scripts take time to prepare as patient care takes precedence. Scripts will be completed by the medical team Tuesday and Thursday and either sent our of faxed as per your request. Please try to get your repeat prescriptions when you come to clinic.
Viral swabs (throat and cough) usually take 24 hours processing time through to 7 days for validation and sputum bacterial samples can take anywhere from 5-14 to validate. Cultures may take up to 3 months. Pathology results will be checked weekly, usually on a Wednesday. Please contact the CF Coordinator or email email@example.com for results.
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.
Paediatric clinics 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.
Adult clinics Dr Pallin 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. 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.
Best evidence, medical advice and worldwide practice has led to the introduction of a new infection control policy, effective January 2017:
- All people with cystic fibrosis entering a Monash Health facility are required to wear a face-mask to limit spreading of bacteria to other people with cystic fibrosis. No surgical mask is required when doing lung function (pulmonary testing), when in your doctors clinical room with door closed or (when admitted as an inpatient), in your ward single bedroom with the door closed.
- All Monash Health staff interacting closely with cystic fibrosis patients such as healthcare staff, porters or radiographers are required to wear long-sleeved disposable gowns and gloves for every contact with a cystic fibrosis patient.
We ask our patients to wear a mask to protect themselves (reverse precautions) and masks are available from Admissions, Sleep and Respiratory reception, lung function lab, your CF coordinator and on the wards. If you have a question about infection control, please discuss this with the CF Coordinator or your doctor.
What if I am becoming unwell?
See How to Contact Monash CF attached below
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; telephone 9594 2702 or email 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. You can also speak with the CF Coordinator or Social Worker
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, financial assistance and advice, contact Cystic Fibrosis Victoriahttp://www.cysticfibrosis.org.au/vic/
or talk to your social worker or CF team about your specific needs
- Monash Switchboard 9594 6666
- CF Clinic (during hours) 9594 2915
- Sleep and Respiratory reception 9594 2900
- Lung Function lab 9594 2278
- Diabetes Adults 9594 2622
- Diabetes Paediatric 9594 4342
- Gastroenterology Adults 95949146
- Gastroenterology Paediatric 9594 3185
- Diagnositc Imaging/Radiology 9592 2200
- CT 9594 2198
- DEXA Bone Density 9594 1390
- Pharmacy 95942362
- Genetic Counselling 9594 2702
- HITH (Hospital in the Home) 9594 2617
- Monash Childrens at Home 9594 4154
- Social Work Department (Wright Street flats accommodation for adult patient families) 9594 2290
- Ronald Mc Donald House (Accommodation for paediatric families) 9562 7230
- Journal of Cystic Fibrosis http://www.cysticfibrosisjournal.com/
- 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
- New Monash Children's Hospital http://www.monashchildrenshospital.org/
- 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 or talk to your social worker
- Donations to Monash Health Foundation: http://intranet.southernhealth.org.au/public_affairs/monash_health_foundation.html
See document downloads below.