At around 18 years of age, young people with CF in WA will transition their health care from Perth Children’s Hospital (PCH) to Sir Charles…
Managing the daily treatment of cystic fibrosis (CF) can be quite challenging, whether you are the parent of a newborn, young child, adolescent, or are an adult living with CF. We have a range of programs to help support you or the person in your life living with CF. Support is available via phone, video call or in the comfort of your own home.
To access any of our services, please reach out to our Services team on services@cfwa.org.au or phone (08) 6224 4100.
Community Support Worker Service
CFWA have a Community Support Worker (CSW) service available in the metropolitan area to provide regular home visits to children and adults with CF. Our CSW program is funded by the Health Department of WA and offers assistance with airway clearance, nebulisation and exercise. Our CSWs receive regular training to provide them with the skills and knowledge they need to supervise treatments safely and effectively.
Practical home support including help around the house, as well as short term respite, is also available for families experiencing an acute change in circumstances. This may be the birth of a new baby or injury/illness.
This service is available for anyone with CF and can be accessed by referral from your CF team or self-referral.
Cleaning
We can offer short term cleaning packages for people experiencing an acute change in circumstances. This is an 8-week package which provides 2 hours of cleaning a fortnight. This program has specific criteria, please contact us to see if you are eligible.
Psychosocial Therapy
We have a dedicated psychosocial team that supports the community, including individuals with CF and their family. Click here to read more about our psychosocial programs.
CF Connect Programs
CF Kids Connect
CF Kids Connect is a safe, online space for kids with CF to connect via video and participate in group activities. The sessions are facilitated by our services team and are available to children with CF aged 5-12 years.
Groups are broken down into age groups (5-8 and 9-12) so that content is relevant, safe and appropriate. Each session has a different theme such as Lego, playdough, STEM, baking and more. The sessions aim to build friendships and connect kids living with CF across WA.
To learn more about this program and see our term planner, click here. New participants are welcome at any time.
CF YOUth Connect
CF YOUth Connect is an online connection space for our CF community aged 12-17 years. It is a chance for teens with CF to connect online in a safe, facilitated environment and engage in fun activities.
To learn more about this program and see our term planner, click here.
CF Parents Connect
CF Parents Connect is an online playgroup for parents of kids with CF (aged 0-5) to come together, connect, talk about all things parenting and life and support each other through the challenging and joyful times.
Facilitated by our Services team, our goal is to provide a space that is positive, supportive, informative and collaborative. Sessions run fortnightly on a Wednesday morning during school terms.
To learn more about this program and see our term planner, click here.
Hospital Support
Children
Hospital Care Packs and Visits
We provide Hospital Snack Packs to Perth Children’s Hospital (PCH) which are distributed by your CF team as needed. You can ask on the ward if you would like one.
We can also deliver a Hospital Care Pack full of activities to help keep your child busy during an admission. Please contact us to arrange delivery. A CFWA Services team member can also visit on request to discuss services and support.
Financial Support
For people experiencing financial hardship, we can offer financial assistance for CF related hospital/clinic travel and parking. Click here for more information.
First Hospital Admission
If your child is admitted to hospital for the first time, we have a ‘My First Admission’ video series which can help you prepare for the admission.
- Part 1: Admission Process
- Part 2 What to Expect
- Part 3 Dealing with Anxiety and Stress
- Part 4 Financial Considerations
We also have a First Hospital Admission factsheet.
Adults
Hospital Food Bag and Visits
If you’re an inpatient at Sir Charles Gairdner or Fiona Stanley Hospital, you can apply online for a Hospital Care Pack made up of snacks and some toiletry items. Click here to request a bag. We aim to deliver bags within 2 business days , but will depend on staff availability.
Financial Support
For people experiencing financial hardship, we can offer financial assistance for CF related hospital/clinic travel and parking. Click here for more information.
Hospital Transition Program
At around 18 years of age, young people with CF in WA will transition their health care from Perth Children’s Hospital to Sir Charles Gairdner Hospital. CFWA can assist with the process by offering information and support to both the individual transitioning and their parents.
We have a transition support subsidy to help with the cost of attending CF-related hospital appointments or admissions by providing $50 for the first two visits to SCGH. We can also offer a transition care pack and support and guidance as needed. Further resources and information about the transition process is available here.
Physio & Equipment
Our physio can help you with physio advice and nebuliser support. We have a limited stock of portable nebulisers available for children thanks to funding from Telethon. Equipment is issued in consultation with the CF team.