Cystic Fibrosis - For patients and families

These are the resources that we recommend to our patients and families who are at different stages of their Cystic Fibrosis (CF) journey.

Coronavirus update

We have prepared information and resources for our patients and families around Coronavirus (COVID-19). 

Read more here.

Preparing for your child's bronchoscopy

Cystic Fibrosis and incontinence

Did you know that girls with CF can experience urinary incontinence? Whilst urinary incontinence (the loss of bladder control) is a condition experienced by millions of people around the world, it occurs more frequently in girls with cystic fibrosis. Even some boys with CF experience loss of bladder control but this in similar numbers to that of their peers. 
 
The severity of symptoms ranges. It usually starts with occasionally leaking a few drops of urine (wee) when coughing, sneezing or laughing. In girls with CF, coughing is the most frequent cause of leakage. 
 
During chest infections when you are coughing more, there is a greater risk of leakage or increased amount of leakage. We did a study of adolescent girls with CF in our clinic and 33% percent reported some type of leakage. This compares to 3.5-5 % in similar aged girls without CF. It also appeared that girls who cough frequently are more at risk of developing these symptoms.
 
The good news is that we can do something about it. The first step is to talk to your clinic physiotherapist or someone in the team. Physiotherapists can prescribe strategies and exercises to prevent and improve symptoms. In our study, the girls who participated were easily able to learn ‘the knack’ to control their bladder and said it wasn’t embarrassing. Next time you are in clinic, feel free to discuss the topic further with your clinic physio or one of the team. 

Urinary incontinence and Cystic Fibrosis - Health Fact sheet (PDF 688kb)

Medication pre-ordering form

Use the CF Pre-ordering form to order your routine, ongoing medications and have them ready to pick up before or after your hospital appointment.

Medications that are not included on this form, such as periodic or specific medications will need to be requested in clinic.

How to use this form

  • Individually select the medications you need the drop down boxes 
  • Once all fields are completed, you can either 'Save' or 'Email' the form
  • Make sure that you submit before 11am the Monday before your next clinic appointment
  • If you are unable to collect your medications, please call PCH Pharmacy on 6456 0190.

Download CF Pre-ordering Form (PDF 1.3mb)

Newly diagnosed

For parents of newly diagnosed children, Cystic Fibrosis WA and CAHS have developed a guide.

Cystic Fibrosis New diagnosis information for parents guide cover

Download this guide here (PDF 1.95MB)

Fact sheets

What to bring for hospital admissions
Please bring the following items to hospital when you’re being admitted:
  1. List of your child's current medication
  2. Physiotherapy equipment including all nebuliser pots
  3. Nebuliser units, if they are due for servicing
  4. Enclosed/running shoes
  5. Gym clothes
  6. Drink bottle
  7. Comfort items i.e toys, blankets, books etc. 

Find out more about coming to stay in hospital.


What to bring to respiratory clinic appointments
Please bring the following items to each respiratory clinic appointment:
  1. List of required medications
  2. Physiotherapy equipment including a sachet of HTS and Ventolin if your child uses this for physiotherapy
  3. Sputum sample from the day of your clinic appointment.

Annual review
If you are due for your annual review, please remember to bring these additional items:
  1. Nebuliser units to allow for annual servicing

Please drop off your nebuliser unit for servicing as soon as you enter the hospital to the Equipment and Consumable Service (ECS) located on Basement Level 2 (Green Lifts) near the underground carpark. Please let ECS staff know that it is a CF service.  This will ensure you keep your own machine and the service is completed and ready for pick up after clinic.

2. Nebuliser pots

3. Physiotherapy equipment

Download the Annual Review letter (PDF)

Medications
You can pre-order your medications and collect from the PCH Pharmacy on the day of your outpatient clinic appointment.

CF team

Your appointment

If you have any questions regarding your respiratory clinic appointment, please contact the Cystic Fibrosis Nurses by email or on 6456 0217.

PCH CF resources

  • PCH Respiratory regional clinic rosters 2019

Useful links