Palliative Care Australia (PCA) and the Australian and New Zealand Paediatric Palliative Care Reference Group (ANZPPCRG) combined to present a briefing on the issue to the Parliamentary Friends of End of Life Care Group.
Speakers included ANZPPCRG chair Dr Marianne Phillips, who told the gathering of parliamentarians and staff, departmental officers, clinicians and academics that children were missing out on palliative care because of gaps in service delivery, the failure of services to integrate and the lack of support for families.
Dr Phillips said that the care of children and adolescents with life limiting conditions was not addressed with the same intensity as older people – an issue she had had to be addressed.
Other speakers included former Commonwealth Games and Olympic sprinter Raelene Boyle, patron of the Sporting Chance cancer foundation and Melbourne father Simon Waring who simultaneously lost both his son Marmaduke and wife Milson to cancer.
Marmaduke’s story – and that of his family – was the subject of the PCA commissioned Little Stars film that was screened at the function. It was backed up by Simon’s powerful re-telling of how the family used palliative care to keep Marmaduke at home during his illness and eventual demise. Simon explained that the family’s hands-on approach – spending every waking moment with Marmaduke – turned a harrowing experience into a joyous time.
The function also served as a launch pad for the latest edition of the Queensland Health Service’s publication, A practical guide to Palliative Care in Paediatrics, first published in 1999.
PCA’s CEO Liz Callaghan said it was important that access to paediatric palliative care should be equally available to children, adolescents and their families – regardless of where they lived in Australia.
This article first appeared in the Australian edition of ehospice.
“Some Australian families receive excellent care, but what occurs in inner city Melbourne may not be the same experience for a family in outback Queensland.
“Tragically, many families experience the loss of a child yet, despite this, the focus of palliative care is overwhelmingly on older people.”
Dr Phillips backed Mss Callaghan’s assertion, saying that at any one time, there were nearly 5000 children around Australia – one on 1000 – whose condition warranted access to palliative care.
This article first appeared on the Australian edition of ehospice.
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