“I've never been to a conference with so much heart”

A blog post written by The Paediatric Palliative Care Project Team at Palliative Care Australia

A fire has been lit under the delivery of paediatric palliative care in Australia, with delegates at the inaugural Australian Paediatric Palliative Care Conference (APPCC) inspired to continue and grow their important work.

Held online over two days (13 & 14 October 2022), APPCC attracted close to 350 delegates from around Australia and around the globe – including New Zealand, Singapore, and Saudi Arabi. 

In reviewing the feedback, it’s clear that the nurses, doctors, allied health staff, and researchers who were drawn to the event want more, and want better for the infants, children, young people, and families in their care. 

“There’s no other conference that lifted my spirit and pushed me to do more for my clients,” one delegate said.

“I've never been to a conference with so much heart,” said another.

That sense of dedication all those who work in this challenging space bring to their role was a theme that weaved through the 50 plus presentations and workshops, but so too was a determination to action the many learnings and connections.

“I definitely have numerous notes of things to follow-up and implement,” laughed one delegate.

“Understanding the latest research and what are the newest resources that are available to us is so valuable,” wrote another.

But it was the deep and authentic place the voice of lived experience had within the conference program that seems to have had the most impact.

Apart from a number of speakers drawing on real world case studies for their presentations, over a dozen young people and families shared their very personal experiences engaging with paediatric palliative care. 

The people who took part, did so with great respect for those who work in the sector, and were driven by a deep need to improve the system for other families. 

“I think the inclusion of those with lived experience of life limiting conditions serves to highlight how critical this perspective is,” one delegate reported.

Other perspectives included:

“Hearing firsthand experiences always makes you want to do better.”

“Often what we consider important and what families consider important are two different things. Taking time to listen and ‘be a part of their lives’ is just as important as the medical information.”

“This was the most important part of the conference. I will continue to try and have open and honest conversations with families around planning for care towards end of life.”

APPCC forms part of the Paediatric Palliative Care National Action Plan Project, a three-year partnership between Palliative Care Australia (PCA) and Paediatric Palliative Care Australia and New Zealand (PaPCANZ), funded by the Australian Government. 

This was the first-time health professionals who work in this challenging clinical and emotional environment had come together nationally. It was a real moment in time and one the sector is keen to repeat with 100% of respondents saying they would attend the conference again, many flagging a desire to be face to face next time to enrich the experience.

With the funding support and sponsors, PCA hopes to deliver the event again in the future, but in the meantime the lessons learnt, the services highlighted, the researched shared, and the connections made this time around are already at work.

For our part, the delivery of the Paediatric Palliative Care National Action Plan (the Plan) is key. We are on track to finalise the Plan soon following extensive consultation with families and the paediatric palliative care sector.

The Plan points to solutions and resources that address the needs identified and echoed by speakers and delegates at APPCC.

PCA is exploring a range of government and non-government funding options that will see the Plan become a reality.

In closing, the importance of ‘self-care’ was highlighted at the conference, and something many delegates committed themselves to doing better in the future – for themselves and their patients.

“The self-care components were invaluable to me. I feel heartened and invigorated. I will look at how my team can learn from them,” one delegate said.

Let’s make sure we remember that and look after ourselves so we can look after others.

The Australian Paediatric Palliative Care Conference was supported by the Commonwealth Department of Health and Aged Care, Quality of Care Collaboration Australia (QuoCCA), and PalCare. 

Videos from APPCC will be available on the Paediatric Palliative Care National Action Plan Project website, and the Palliative Care Australia website, subscribe to the PCA eNewsletter or Paediatric Palliative Care eNewsletter to stay up to date.