ABSTRACT 

After my daughter died, I had two very strong, almost innate urges. The first was I wanted her to be remembered. She is my baby and she is loved. Secondly, I wanted to help other families get the same care for their own child. How could I, a bereaved mother make any difference? I’m not an expert, truth be told I felt so broken how could I help anyone? After my daughters first anniversary these urges started to ramp up and I started to look at ways that I could help fulfil these unmet needs. 

 

It all started when I connected with the Neonatal Unit where my child had lived most of her little life. A Neonatologist and research nurse provided me an opportunity that I embraced with my whole heart and it has truly changed my life. Over the last eleven years I have been part of hospital advisory groups, contributing to policies, procedures and development of resources. I have worked in universities helping shape curriculum and guest lecture.

 

I have been the parent lead and consumer representative for multiple research projects and initiatives. Some of this research has made considerable changes in Neonatal units fostering high quality care, dedication to continuous improvements, education and support for staff. I have lobbied Ministers, run workshops for health professionals, raised funds and provided peer support to other families. 

 

Although my daughter is still gone, I feel so proud of her legacy. Her story has helped to drive positive change and given me purpose and to realise I am not broken. I would be privileged to share with you strategies and ways that you can recruit and utilise consumer voices in your own settings and projects.


Twitter:
Neonatal and Paediatric Palliative care are not the same as adult care. They need their own spotlight in the health system and community. Babies and children become sick or severely injured or are born with life limiting conditions. They need palliative care. They will die. Babies and children die every single day. This is not an easy sentence to read. It’s uncomfortable, its hard. What is more uncomfortable is being told your child has a life limiting or terminal condition. Trying to squeeze a lifetime of love, memories, hugs, kisses and lullabies into an unknown time frame and holding your child in your arms as they take their last breath. Palliative care embraces the whole family and is led by the child, it provides comfort and light in the darkest of times. Palliative care families are not broken, we are warriors for our children. We love them with a fierceness that comes deep from your bones. We want you ask their name, we want to share our child’s story and yell from the roof tops that they matter. So reach out! Talk to your palliative care friends. Professionals ask us to participate in research and projects. We are their voice, please give us this.