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, online 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 program for children with CF to connect, build friendships and participate in fun group activities from home. Sessions are facilitated by our services team and are available for children in two age groups; 5-8 and 9-12 years.
They include age-appropriate, engaging activities such as LEGO, art, craft, playdough, STEM, baking and more. We also run sessions to include young carers such as siblings and offspring.
New participants are welcome at any time. To learn more about this program and see our term planner, click here.
CF YOUth Connect
CF YOUth Connect is an online connection space for young people with CF aged 12-17 years. Sessions are run by our Services team and include a range of activities like quizzes, games, craft, guest speakers and more. Each session has a different theme, and participants are encourage to help plan and brainstorm future activities – making the group their own!
To learn more about this program and see our term planner, click here.
Online CF Mums’ Group
Our CF Mums’ Group is an online playgroup for parents of pre-school aged children with CF (aged 0-4). It creates connection and friendships, and offers a safe space to talk about all things CF, parenting and beyond.
Sessions are informal and are facilitated by our Services team. 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 Bag and Visits
If you’re an inpatient at Sir Charles Gairdner or Fiona Stanley Hospital, you can apply online for a Hospital Food Bag made up of snacks and toiletry items. We also have a range of Lego and other activities such as adult colouring in and puzzle books to help pass the time. Please let us know in the comment section if you would like any of these. Click here to request a bag.
Please note, 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.
Year of the Frog
The Year of the Frog project is a collaboration with Perth Children’s Hospital and hopes to boost the number of families submitting sputum samples each year. Regular sputum samples are recommended every 3 months (4 a year) in children and young people with CF. These sputum samples are used to detect and identify bacteria, viruses and fungi that may be found in the lungs and enable quicker treatment.
We have created educational videos to help children and young people understand the importance of sputum samples, have created a ‘frog passport’ to be stamped each time a sample is submitted and also offer an incentive prize once 4 samples have been submitted.
To read more about the project and access resources click here.