Melissa Nixon has heard too many stories of people living their final days in pain, rather than face the alternative – die in hospital.
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The Cancer Council spokeswoman is one of hundreds across NSW behind a campaign to push the state government to address a shortage of specialist palliative care services.
“When you look at states like Victoria and Queensland, they’re operating with a lot more staff to service the community,” she said.
“We’re asking the government to provide NSW with 10 more palliative care physicians and at least 129 more palliative care nurses.”
The Australian Institute of Health and Welfare found in 2014, there were 10.8 full-time equivalent palliative care nurses per 100,000 people in NSW.
This ratio compared to 13.1 in Victoria and was the lowest out of all states and territories.
The 2016 report also found three-quarters of all nurses worked mainly in major cities.
Gerogery’s Jenny Jensen has been campaigning to expand options on the Border since her son, Ricky, died of leukaemia at 24 in 2010.
“Yes, it is frustrating – governments are slow to move,” she said.
“Campaigner Yvonne McMaster had an interesting scenario with a couple of organisations in Victoria.
“Where NSW might have two nurses, they had four and the difference of people dying at home there compared to those in our area was double.
“It shows you more nurses on the ground means the palliative care is better and more people can die at home.”
Mrs Jensen said Ricky wasn’t offered palliative care until the last three weeks of his life.
“They knew he could die at any time – but if he had known that when he was well, he could have done all these things he wanted to.
“Once they offered palliative care to him and said, ‘Sorry, there’s nothing more we can do’, he was too unwell to do any of those things.
“I’d like to put to bed the ‘palliative care’ name, because it engenders fear in people – when it’s supporting you in a journey of a life-threatening illness.”
Cancer Council’s campaign is working in this light and also calls for culturally appropriate care for Aboriginal people.
“One of the things that will hopefully come out of this campaign is changing people’s minds about what entails palliative care,” Ms Nixon said.
“Are you going to jog a marathon with cancer that’s metastasized across your body? Probably not.
“But you don’t have to live with pain either.
“It’s about living the best life possible, not about helping you to die.”
Cancer Council NSW has received more than 4000 signatures on its letter to NSW Health Minister Jillian Skinner, calling for the positions to be funded.
To add your support, go to canact.com.au/palliative_care_pledge.