Support Programs

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.

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 support for 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. Short term respite is also available for families experiencing an acute change in circumstances.

This service is available for anyone with CF and can be accessed by referral from your CF team or you can contact our physiotherapist, Sam on sam.wallace@cfwa.org.au or phone 08 6224 4100

Cleaning Support

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 Paula for more information on paula.wallace@cfwa.org.au.

Occupational Therapy

CFWA offer one-on-one support and guidance with our experienced Occupational Therapist (OT), Mel. Here are some of the services Mel can provide:

Calm Kids, Happy Families Program

The Calm Kids, Happy Families Program helps provide practical solutions and support to the difficulties that can arise in the family system, particularly when also dealing with CF.

Mel can work with the CF child, siblings and parents on:

Developing routines
Calming and de-escalation techniques
Meal and bedtime assistance
Behaviour management techniques
Consistent parenting
Positive communication
Circle of Security Parenting program facilitated by Mel

For more information please contact Mel on mel.tibbitts@cfwa.org.au or 08 6224 4100.

Here are some tips from Mel for basic strategies you can implement at home to help your child:

Self-Soothe Support Box

A self-soothe support box is a grounding, sensory tool box to help in times of stress, anxiety or worry. It’s a great tool to have to hand that contains things that help ground your child, make them feel more relaxed and reduce symptoms of panic, anxiety, emotional distress or low mood.

Based on the sensory model for supporting anxiety and stress, the packs are created to support your child’s sensory preferences and contain items such as heat and weighted toys/blanket, fidget toys, auditory support (headphones, meditation etc), notebooks for journalling and mindfulness activities.

We hope these items will be useful to children and young people with CF experiencing anxiety or stress related to hospital admissions, procedures or indeed other aspects of life that cause heightened stress and anxiety. For more information about this program, please contact our OT Mel on mel.tibbitts@cfwa.org.au.

Virtual Catch Ups For CF Kids

These online sessions are facilitated by our occupational therapist, Mel and are available to children with CF aged 6 to 12 years. Groups are kept small and are broken down into different age groups so that content is relevant, safe and appropriate.

The sessions last around 15-30 minutes, and aim to build friendships and connect kids living with CF across WA. In each session, children are given the opportunity to do a show and tell or talk about what’s been going on in their life. Questions are asked and experiences are shared in a safe and fun environment.

New participants are welcome at any time. If your child is interested in joining in, please contact Mel on mel.tibbitts@cfwa.org.au

Hospital Support

Child Support

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.

A CFWA services team member can also visit on request. Please contact Sam on servicesmanager@cfwa.org.au to arrange.

Financial Support

We also offer financial assistance for hospital and clinic appointments to assist with travel and parking. Click here for more information and to apply.

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.

We also have a First Hospital Admission factsheet.

Adult Support

Hospital Food Bag and Visits

If you’re an inpatient at Sir Charles Gairdner or Fiona Stanley Hospital, you can apply online for an Inpatient Food Bag made up of snacks and some toiletry items. Click here to select your food items and submit your bag request. We usually deliver bags one day per week. For any questions please contact the office at 08 6224 4100.

Financial Support

We also offer financial assistance for hospital and clinic appointments to assist with travel and parking. Click here for more information and to apply.

Equipment

CFWA has a stock of portable nebulisers available for community members. Equipment is issued in consultation with the CF team.

We also have portable oxygen concentrators available on loan for people with low lung function.

If you would like more information please contact our physio via email sam.wallace@cfwa.org.au or phone 08 6224 4100.