Our clinic provides specialist care for adults living with Cystic Fibrosis (CF).

About this service

We provide multi-disciplinary care (care from a team of specialist doctors and health professionals) for adults with Cystic Fibrosis.

Our team includes:

Doctors: A Respiratory Specialist and Endocrinologist will review your health status, adjust and explain your treatments and write your required prescriptions.

Respiratory Scientist: will measure your lung function.

Dietitian: will provide a nutrition assessment and advice on nutritional requirements, pancreatic enzymes and vitamin/mineral and nutritional supplementation.

Physiotherapist: can discuss your physiotherapy and home exercise regime, including the use of inhaled medications.

CF nurse: will co-ordinate your clinic appointments, help you organise your scripts, annual reviews, hospital admissions and home treatments. You can also contact the nurse for test results.

Social Worker: can provide advice and assistance with personal/family, social, or financial issues you may encounter.

Genetic Counsellor: By referral - to provide genetic education and screening for family members and partners.

Who we care for

Our services are available to adults with a diagnosis of Cystic Fibrosis.

How to access this service

You will need a referral from your GP to access this service.

If your doctor has written you an ‘indefinite’ or ‘ongoing’ referral you can book yourself an appointment any time you would like us to review your condition. The indefinite/ongoing referral means you can come to see us anytime without needing to see your GP for a new referral.

We hold clinics every Wednesday from 12:45 to 5pm. You need an appointment to attend.

To book an appointment call the Adult Cystic Fibrosis nurse on (02) 5124 2066 or 0466 809 474 or you can email DRSM@act.gov.au

What to expect

When you arrive for your appointment we will place you in a room and your nurse will measure your weight, oxygen saturation and blood pressure.

Each of your doctors will come to see you in your room.

Your appointment usually takes over an hour  so you might like to bring something to keep you entertained while you wait. You might also like to bring something to eat and drink.

What happens if I need to be admitted to hospital?

If you are admitted to hospital to stay overnight we will do our best to put you in a single room.

You need to bring your own supply of Pulmozyme®, Creon®, and Modulator medication Kalydeco/ Orkambi/ Symdeko/ Trikaftor and your Airway clearance device/ Nebulizer.

Scripts

To fill a Canberra Hospital Pharmacy script contact the hospital pharmacy via email pharmacyoutpatients@act.gov.au or call (02) 5124 8622 or (02) 5124 2532.

Please allow one week the pharmacy to prepare your medication.

If you need a script you can contact the CF nurse on 0466 809 474 and allow 2 business days for us to get your script arranged.

What is an Annual Review?

We recommend that each year you have an annual review. The annual review allows us to gather long term and valuable information about your health. We will let you know what tests you will need as part of your review.

Tests may include:

• blood tests
• chest X-ray
• oral glucose tolerance test
• Bone Mineral Density (BMD) test
• full respiratory and exercise tests.

Most of these tests will be done at Canberra Hospital and can be done in one visit.

We will tell you how to book your annual review. We will talk to you about the results of your tests at your next clinic appointment.

What to bring to your appointment

• Medicare card
• Health Care Card and/or concession card
• Mask (wear this while you are here)
• If this is your first visit please bring your Nebulizer
• Your Physio Airway device
• Any prescribed bronchodilators such as Ventolin
• You are welcome to bring something to eat and drink or a book or device to read while you wait.

Where we’re located

We are located at the Canberra Hospital.

• Our clinic rooms are in Building 1, Level 8.
• The Respiratory Laboratory is in Building 1, Level 2.

We have directions to Canberra Hospital.

Information for referrers