Capturing palliative care stories
The dying, their carers and families are telling their stories in a bid to win community recognition and support for better palliative care services.
Palliative Care Australia (PCA) is working with the Consumers Health Forum of Australia on a project which seeks to give healthcare consumers a stronger voice in health policy decisions. Their stories appear on the Forum’s OurHealth website.
Pain management, advance care planning, caring for a loved one at home and paediatric palliative care are among the painful yet often uplifting stories that are told through videos, creative writing and storytelling.
For example, ‘Carmen’s Story’ explains how she struggled with pain related to her cancer diagnosis and how palliative care staff helped her manage this. Michael’s story is a moving account of the struggles of caring for someone when there is limited funding for at home support.
The views and experiences of consumers also come with their ideas about how to improve Australia’s healthcare system: ideas that help consumer advocates and organisations work for change to improve outcomes for patients, their carers and families.
Dr Yvonne Luxford, PCA chief executive, said: “What patients, their carers and families think about healthcare really matters.”
Over the coming weeks more stories will be uploaded which will contribute to an important knowledge base of issues that help people better understand palliative care and find helpful information.
Another key part of the project is the ‘Have a say’ forum which encourages people to start and join conversations on different health topics.
‘We’ve started conversations about how we can better support carers, whether people have made plans for their future healthcare and asked people’s ideas about how we can get better talking about death and dying as a society,” Dr Luxford said.
“Consumer experiences and ideas are key to making changes happen and I encourage everyone to get involved with OurHealth.”
