We invite our families to get involved with us by becoming a Palliative Care Consumer Representative.
Being a Consumer Representative offers you the opportunity to give your feedback directly to the 3 NSW Paediatric Palliative Care Services when we are seeking input from our parents and carers. This 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 Consumer 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 Consumer 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 further information or would like to become a Palliative Care Consumer Representative please contact:
Paediatric Palliative Care Program Manager Co-Lead, Sydney Children's Hospital Network
Phone: (02) 9845 3186
Alternatively you can speak to a staff member from your palliative care team.