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16 THE wEll-RESPECTED ADVOCACY GROuP CAnCER VOiCES nSw will COllAbORATE wiTH MACquARiE uniVERSiTY HOSPiTAl TO EnSuRE THAT PATiEnT nEEDS AnD HOSPiTAl SERViCES ARE AliGnED. Robust dialogue between patient needs and hospital services is vital if the health sector is to deliver the best possible services. When it comes to cancer, this task is challenging because the disease is complex and the patient journey often a long and difficult one. The independent consumer advocacy group Cancer Voices NSW was established to keep that dialogue alive, taking the voices of patients diagnosed with cancer to government, medical and other health services organisations. Sally Crossing, Founder and Chair of Cancer Voices NSW, established the group ten years ago, initially influenced by her own breast cancer experiences. She left a career in the banking and government sectors to devote herself to addressing the pressing need for a state-wide cancer consumer voice. That voice would give patients what they needed to be able to influence decision-makers and become more effective health consumers. In 1997, Sally started the Breast Cancer Action Group NSW. Along with other like-minded cancer consumers, Sally realised that many issues for cancer patients were the same – regardless of cancer type – and that a collective voice could bring more powerful results. Cancer Voices NSW was set up in 2000 and has just celebrated its first successful decade. The group is now a robust advocacy group that is getting some big wins for patients. “our role is to say ‘this is what patients need; this is what patients would like,’” said Sally. “In this sense, we are the dialogue between patients, doctors and the health system’s decision-makers. For cancer patients, there are lots of unknowns. They need support when they walk into a hospital. Things need to be made easier for them. “That’s part of the work that Cancer Voices NSW is interested in. And it’s part of what we will be doing with Macquarie University Hospital.” This work contributes to the group’s wider purpose: to enable cancer patients to become informed health consumers, where access to reliable information is a key step in becoming an active part of the decisionmaking process. “I took a few wrong turns, when I was initially diagnosed,” said Sally. “I followed what was recommended to me, rather than making some of my own decisions based on well-researched and credible information. “Initiatives to better inform cancer patients are often simple in concept, but of huge significance for those needing the services. “For example, we advocated for and helped develop a consumer friendly cancer trials website, so that people could review the research being done and see if there was a clinical trial that might suit their own cancer profile. It’s now hosted by Cancer Australia. Another much-needed initiative has been establishing a directory of specialists and surgeons. For cancer patients, often finding the right health care professional is a crucial step in their treatment. “Following only a GPs advice may not serve a particular patient well,” said Sally. “A GP may not know the full range of cancer specialists, or which are connected to appropriate multidisciplinary teams. So the Breast Cancer Action Group NSW, together
sAlly Crossing GeTTING CANCeR VoICeS HeARD 17
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Page 5 and 6: PlASTiC SuRGEOnS AT MACquARiE uniVE
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Page 9 and 10: dr miChAel stePhen, kAthryn busCh A
Page 11 and 12: patients with shoulder instability.
Page 13 and 14: A COMPREHEnSiVE liTERATuRE REViEw f
Page 15: 30 percent of energy from a patient
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Page 21 and 22: this PAge: Professor miChAel morgAn
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Page 27 and 28: MEMbER fOR bEnnElOnG ViSiTS MuH The
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