State Wide Care Plan

For the past 12 months, the PWSA Victoria has been working closely with Monash University, Monash Children’s Hospital, The Royal Children’s Hospital, Melbourne and Monash Partners to piece together an evidence-based state-wide care plan for children living with Prader-Willi Syndrome.  The research is being gathered and the team is on track to deliver the first care plan of this kind in Australia.

The next step in the process is to hear from stakeholders, including families living with Prader-Willi Syndrome. Shortly, we will be inviting you to participate and have your say on what you find currently works well within the hospital network and beyond, and where you believe improvements can be made.  This will be done via an online portal and will allow you to easily provide input in your own time. The portal will be open for a number of days. There will be a separate allocated time, for health professionals to provide their feedback in the same manner. After this feedback is collected, the team can begin to fine-tune the areas to be included in the further development of the project.

Eventually, we will be looking to develop a smaller focus group to further brainstorm with selected clinicians to refine areas of concern and need. 

The State-wide care plan is an ongoing project and all those involved are quite excited to see where this initiative will lead. 

Once established at the two major children’s hospitals, the care plan guides will roll out to all hospitals in Victoria and the aim is for the information to trickle down to all paediatricians and eventually all GP’s and health care professionals. 

Although each state of Australia has its own health system, and this project doesn’t have the ability to roll out from here nation-wide without a plan to do so, it will provide a template allowing other states to implement with a minimum of replicated effort. 

Our 2020 and 2021 annual PWS 15 for 15 Challenge fundraisers have successfully funded this project to date and will do so until project completion. This is certainly one of PWSA Victoria’s most worthwhile, most needed, and most ambitious projects that we have initiated in quite some time.

Once again, thank you to our PWS 15 for 15Challenge participants and all those who have donated for creating this opportunity for improvement in our children care as, without you, this would still just be a dream.

Please keep an eye out for information inviting you to have your say on our website, social media and in a separate email. 

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Article By Sarah Rees

Sarah lives in Geelong and her youngest son Jayden was born with Prader-Willi Syndrome. Sarah has been an active member of the Prader-Willi Syndrome community and holds a position on the Prader-Willi Syndrome Association of Victoria Inc. board and holds the position of Vice President and Event Coordinator.