Jodi Steel
Mary Macheras-Magias
Stacie Piper
THE ABC OF BCNA In BCNA’s 25th year, Consumer Representative Jodi Steel shared her reflections on BCNA’s acronym.
B is still for breast cancer but so much has changed – treatments, how many people are diagnosed (although we don’t have accurate numbers of people with metastatic breast cancer) and the landscape is very different.
C is for connection with other consumers, consumer representatives, BCNA staff, health professionals and other organisations in the breast cancer ecosystem and with breast cancer researchers.
N is for the network of BCNA’s members, CRs,
A is for Australia . Who is visible and who is invisible in our health care system, and even within BCNA. It helps us to keep questioning how we advocate to do more across ‘A’, especially where access to optimal breast cancer care is difficult or limited.
research organisations, medical professionals and other breast cancer organisations.
THINKING, SHARING, CONNECTING AT THINK TANK 2023
I n February this year, Think Tank event in Melbourne, bringing together 22 BCNA Consumer Representatives (CRs) from across Australia. It was two lively days of connection and sharing, debate and discussion, creative ideas, listening and celebration. BCNA’s Policy & Advocacy team hosted its second Think Tank 2023 celebrated the value of consumer voices, explored building the capacity of BCNA’s Seat at the Table program, and identified opportunities for engagement with CRs in projects across the organisation. BCNA’s CEO Kirsten Pilatti officially opened Think Tank 2023 with reflections on BCNA’s values and how the Think Tank provides an opportunity to see those values in action: ‘We are stronger together, we speak up, we are courageous, we are inclusive, we care and show empathy to all those we encounter,’ Kirsten said. In a Welcome to Country,
Wurundjeri and Dja Dja Wurrung woman Stacie Piper spoke of the importance of storytelling, language and connections to Country and between each other. Hopes and expectations for the two days were to connect, learn, be inspired, see progress, be heard and acknowledged and to contribute. ‘A gathering of creative, committed,
of people affected by breast cancer were under-represented in Australia. ‘At the first conference in 1998, it was clear that we wanted to be seen and heard, not just storytellers,’ said Vicki Durston, BCNA’s Director of Policy, Advocacy and Support Services. ‘Diverse voices bring about diverse thinking and fundamental change,’ she said. ‘Over the next two days we will be exploring how we continue to be a strong voice in an ever-changing world and how we reach the hardly-reached to ensure equity and access to care, treatment and support for all people with breast cancer.’ Researchers and CRs co- presented research projects highlighting the value of CRs as partners and the contribution of the lived experience. ‘I needed people who had been there,’ said Dr Anna Singleton, University of Sydney, of her research project EMPOWERSMS.
Why are events like the Think Tank important for ensuring everyone in Australia affected by breast cancer receives the best treatment, care and support? The Think Tank is extremely important in capturing the voices of people with lived experience. It is this firsthand knowledge which adds richness and authenticity to ensuring that people across Australia receive the best treatment, care and support. What is your reflection on 25 years of BCNA? And what are your hopes for the next 25 years? I recall stumbling upon a BCNA display in the Treasury Gardens in Melbourne in early 1999. It was a message on a Pink Lady that made a huge difference to me. It was a message from a young boy to his mother. It was the first time I felt connected and not so alone. I knew for the first time that there was another young woman out there experiencing the same things that I was. I hope that BCNA continues to connect and support everyone and that treatment and survival continue to improve.
Is there an activity that you have been involved in that stands out for you? I have been lucky enough to work on many projects. The one I am most proud of is the development and implementation of the clinical guidelines for the management of young women affected by breast cancer. Do you think BCNA’s advocacy for better care, treatment and support for those affected by breast cancer has made a difference? How different would the experience be now, compared to the one you had? The experience for women going through breast cancer has changed significantly. The introduction of breast care nurses, sentinel node biopsy and all the amazing resources, such as BCNA’s My Journey resource makes a difference. I think women feel supported and are seen. My experience the second time round was vastly different. I felt part of a community and not as alone and isolated as I did the first time round.
We asked Mary Macheras-Magias for her reflections on being a BCNA Consumer Representative and the role of BCNA’s advocacy over the past 25 years for better care, treatment and support for Australians affected by breast cancer. Why did you become a BCNA Consumer Representative? I wanted to make a difference in the care of young women with breast cancer. In 1998 when I was diagnosed, any conversation about fertility, for example, was often initiated by the patient. You really had to be your own advocate and I knew that was not good enough. It was also a time when getting a diagnosis as a young woman was difficult. Symptoms were often ignored as something else, and we weren’t really encouraged to come back for follow-up, even if symptoms persisted. This led to too many young women at the time being diagnosed at a later stage.
passionate and intelligent consumer reps who will be listening and talking, sharing
their ideas. Expecting some great conversations and ideas coming out of the Think Tank,’ penned one CR. A BCNA staff member wrote, ‘I love connecting with our consumers at any opportunity. It’s a great way for us to learn about their experiences or thoughts and for them to feel great confidence in what it is we are doing and the ways in which we are doing it. I hope events like this align us all in many ways.’ One word was used by a group of CRs to sum up day one: Engaging. And for staff the word was: Inspiring. Attendees heard that BCNA was founded at a time when the voices
‘Clinicians have a different perspective than patient
perspective – that is why consumer voice is important within treatment and care.’
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June 2023 | Issue 95
Breast Cancer Network Australia
bcna.org.au
Issue 95 | June 2023
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