Bringing the ‘fight’ to the co-design of a national action plan on paediatric palliative care

A blog post written by Melanie Rolfe

I’ve had the privilege of working across a number of components of developing the National Paediatric Palliative Care Action Plan, and I’m looking forward to reporting that more formally at the conference in October, but here I want to focus on the consumer engagement component which was led by Aspex Consulting - talking with families who have lived through the paediatric palliative care journey. Some stories truly left an imprint, and I’d like to pass on some of that wisdom that was shared so genuinely and generously with us. The lessons that stuck with me are ones that are relevant to all of us, as parents, community members, and as humans.

The words that immediately spring to mind, because I heard them so commonly from bereaved parents, is this idea that so much of navigating health and disability services was a ‘fight’. That either families knew to advocate fiercely for the things their child needed, or worse, that they didn’t know what services were available or what they needed, and they missed out. If they knew to fight, this took away from precious time with their child. These families want a sector that doesn’t need them to fight for what is in the best interests of their child or to be respected as the people who truly are the experts in their child’s needs and family’s values. Some families had wonderful experiences, but I don’t think any of the consumers involved had trouble thinking of a family they saw fighting this battle. The consumers who spoke to us were very clear in the need to advocate for these families that fall through the cracks of the system, and who then, years later and still battle-worn, are at risk of being invisible in a project like this because they can’t muster the fight. So to anyone reading this who might feel like that was their story, I want you to know - we see you. And we are working on doing better.

We also heard beautiful stories of communities who rallied around these families with simple things; organising a meal train, mowing the lawn, helping to get other kids to school or putting an extra sandwich in their own kids’ lunchbox; so that the family could focus on what really matters, making memories with their family while they are all here. Anecdotally, a lot of the families who could say they had wonderful community support around them seemed to also report coping as well as could be expected years down the track from when their child died. And there were many stories of the inverse, too.

So, what we heard was a real mixed bag - some phenomenal clinicians who respect the parents as experts in their child and family and understand the full gamut of services that support a family, including services that might seem frivolous but are part of making memories as a family. We saw communities rallying around families to show their support, and stories of isolation and limited services, dictated by postcode. Embedding consumer perspectives allowed us to immerse ourselves in the experience of receiving paediatric palliative care in Australia, rather than just the intention that goes into its planning. The process showed us the strengths of the current system and the things to work on and we have a plan.

Learn more about the National Paediatric Palliative Care Action Plan and join the ‘fight’ at the inaugural Australian Paediatric Palliative Care Conference, happening online 13 and 14 October 2022.
 

 Melanie Rolfe
Consultant for Aspex Consulting and
 Senior Research Assistant 
 Cancer and Palliative Care Outcomes Centre, Centre for Healthcare Transformation
 School of Nursing, Faculty of Health, Queensland University of Technology