When we think of palliative care, we typically associate it with the elderly or middle-aged patients, but infants, children and young people are also affected by life-limiting illness. Paediatric palliative care provides care and support to patients and families through some of the most challenging moments and decisions of their lives, and this is done in ways that often differ from those delivered in adult palliative care services.
In 2019, the Australian Government acknowledged the need to align priorities in paediatric palliative care nationally by investing in a three-year project ‘The Paediatric Palliative Care National Action Plan Project’ (the Project).
Palliative Care Australia (PCA) and Paediatric Palliative Care Australia and New Zealand (PaPCANZ) are leading this project, with guidance from the Project Steering Committee and input from stakeholders and consumers.
This unique opportunity will raise community awareness of paediatric palliative care and help build the capacity of the Australian health care system to respond to the specific needs of children and young people with life-limiting conditions.
This project aims to elevate cross-sector relationships and collaboration in partnership with other projects such as Quality of Care Collaborative Australia (QuoCCA), which will result in nationally available and accessible resources, consistent information and messaging, and a tailored education framework for the specialist paediatric palliative care workforce.
The Project is taking a co-design approach, with the consumer voice at the centre of the initiative. In this context, consumers of paediatric palliative care services include patients, parents and caregivers, siblings, families and grandparents. Opportunities are designed to empower consumers to have a say and be heard in a safe and respectful environment. Our inclusive approach will result in a network of consumers and stakeholders working together to enable change now and drive future initiatives.
The Project Activity Work Plan addresses 10 key areas including developing:
- a national paediatric palliative care action plan
- paediatric palliative care online resource hub/website, and service directory
- information services to assist hospitals and palliative care providers
- parent training guidelines, including around care in-home and ‘home-like’ environments
- a national snapshot of children with high medical needs and life-limiting conditions.
You can find more information on the PCA website, and as opportunities arise, they will be published here.
If you would like to contribute to the project or need more information, please email paediatrics@palliativecare.org.au