Australia’s first Paediatric Palliative Care National Action Plan (PPCNAP) boldly seeks to raise awareness of families’ issues and drive better access to palliative care for our community.
The PPCNAP is a roadmap for a national approach to prioritise and work towards common goals and objectives for paediatric palliative care. This is to ensure that children with life-limiting conditions and their families are supported and receive the information and care they need.
Assistant Minister for Health and Aged Care, Ged Kearney launched the plan on Monday, 24th July, at Very Special Kids, Melbourne. Our Rare Epilepsy Lead, Kris, attended this event on behalf of the Epilepsy Foundation.
The Epilepsy Foundation partnered with the PPCNAP project team to host a roundtable with families to better understand the current and future palliative care needs of Developmental and Epileptic Encephalopathies (DEEs). DEEs are a group of rare and severe epilepsies which commonly begin in infancy or childhood and are associated with frequent seizures of multiple different types, intellectual disability and significant developmental delay, regression, or plateau.
The outcome of this work highlighted palliative care as a valuable framework for addressing the many challenges faced by families impacted by a DEE. Palliative care could be the conduit to engaging families in challenging conversations, and to focus efforts to improve models of care for this rare population. DEE patients have unique palliative care needs compared to other patient populations, and thus their care plans need to be individualised. This work was presented at the 2022 Paediatric Palliative Care Conference and the Global Genes Rare Disease Summit.
The Epilepsy Foundation will continue to work with the palliative care sector to increase awareness of the palliative care needs of DEE patients.
Read more about the PPCNAP here: https://bit.ly/3O7ukqr
Read more about DEEs here: https://bit.ly/3YcjmEL
