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Get Involved

We invite our families to get involved with us by becoming a Palliative Care Parent/Carer Representative.

Being a Parent/Carer Representative offers you the opportunity to give your feedback directly to the 3 NSW Paediatric Palliative Care Services. Your knowledge and sharing insight about your experiences,  helps us to know if we are doing things well or what we can do better.

Here are some examples of how we may ask for your involvement:

  • Review of palliative care resources (information sheets, website pages)
  • Participation in projects (e.g. focus group discussions, surveys)
  • Service development and planning opportunities

We understand that caring for an unwell child is demanding and there will be times when you have limited ability to participate in your role as a Parent/Carer Representative. Your participation will always be voluntary and you are able to participate as much or as little as you like.

If you are a bereaved parent/carer, we also invite you to be a Palliative Care Parent/Carer Representative. We recognise that your experience and knowledge gained over the time of caring for a child with a life limiting illness is invaluable. Your thoughts and ideas can be used to help continue improving the care and support for children and families who are referred to palliative care.

If you would like to become a Paediatric Palliative Care Parent/Carer Representative please select the link below to submit your details and you will be contacted shortly:

Yes, I would like to be involved

 

Alternatively if you would like any further information about becomming a Parent/Carer Representives please contact:

Elizabeth Shepherd: Palliative Care Program Manager Co-Lead, Sydney Children's Hospital Network
Phone: (02) 9845 3186
Email: elizabeth.shepherd@health.nsw.gov.au


You can also speak to a staff member from your palliative care team.