The Interview with: Barbara Smith and Philip Mayo, Aboriginal Liaison Officers (Oncology)

What’s the main role of being an Aboriginal Liaison Officer (ALO) at Alan Walker Cancer Centre?

Barbara: Phil and I extend our firm support to all Aboriginal and Torres Strait Islander individuals who access our Centre during their cancer journey.

While we may not possess clinical training, we are well-versed in Aboriginal and Torres Strait Islander practices and beliefs, holding a wealth of information in this regard.

Furthermore, we possess a deep understanding of how Aboriginal and Torres Strait Islander people perceive Western medical practices, their cultural customs and how these concepts intersect with their own bodily awareness.

In situations concerning breast cancer, Phil and I collaborate closely with the breast care nurses at the Centre, sharing responsibilities and working as a team.

Our Centre welcomes a diverse array of Aboriginal women from various communities. Some arrive accompanied by support persons, while others undertake this journey alone.

The experience can be incredibly daunting for them, as they find themselves in an unfamiliar environment far from their homeland.

This is where our role becomes pivotal. We provide supplementary support, assist them in maintaining connections with their families, offer clarification on their circumstances, aid in managing appointments, and ensure they comprehend the information being conveyed.

Describe how you explain a cancer diagnosis to some Aboriginal patients?

Barbara: Certain Aboriginal individuals struggling with illness often experience a profound sense of shame.

They harbor the belief that their affliction must be a consequence of some grievous misdeed they've committed. In the same way, there are those who might not perceive anything awry because they lack the sensation of being unwell.

The root of the matter revolves around building their trust and explaining that receiving a cancer diagnosis is unrelated to moral transgressions or curses. Our message to them is that cancer strikes indiscriminately, and its origins remain elusive.

In my attempts to convey the concept to certain patients, I employ a metaphorical approach by personifying cancer.

As they cannot identify the ailment directly, I attribute characteristics to it. I might express it like this: 'If we don't attack and weaken this bad fella, it will grow uncontrollably and when it reaches a critical point, it will make you feel ill, signifying. Sometimes, we can't eliminate it entirely, but we can subdue it, make it sleepy'. 

I describe it as a devious, cunning, and malevolent entity, outlining its potential actions. This strategy aids in comprehension.

For conveying the notion of metastatic breast cancer, I often resort to a metaphor involving the pandanus plant.

I liken the cancer to the clustered growth of pandanus, drawing a parallel. I then narrate how the plant's nuts detach, drift downstream, and take root in new locations - equating this with metastasis.

The familiarity with the pandanus's behaviour enables them to relate to the analogy effectively.

What advice do you give Aboriginal and Torres Strait Islander patients when they are seeing their doctor?

Barbara: I empower them with the knowledge that they possess rights and a voice.

During consultations, I extend my assistance, recognising that some of them may struggling with feelings of shame or hesitation to seek clarification, fearing that their lack of understanding could be misconstrued.

In cases where they find themselves puzzled by the doctor's explanations; I encourage them to direct their attention to me. I take on the role of intermediating between them and the doctor, relaying their inquiries and evaluating the doctor's responses. If the explanation suffices, we proceed; otherwise, I persist in seeking clarity from the doctor.

To Aboriginal and Torres Strait Islander patients, I impart the perspective that they are not lacking in intelligence. While doctors possess expertise in medicine, I emphasise that these patients also hold knowledge, insights, and life experiences that doctors might not possess.

I remind them that their pool of information, wisdom, and life's lessons doesn't diminish their worth; they stand on equal ground. I convey the idea that although everyone is equal, our uniqueness makes us different.

You talk about needing to get the word out that your service is definitely needed. What’s your main message?

Phil: Firstly, Barb and I really appreciate the opportunity to be heard and explain a bit more about the role and what we do. There'd be a lot of people out there – including health professionals – who wouldn't really understand what we do. And that's such a missed opportunity for everyone – for the patient, for the doctor.

We are needed because we build that connection and trust within the system, because historically it's still not a very trusted system – the hospital. We help make those connections of trust between patient and doctor because on so many occasions we will talk to the patient first.

What is your main message to Health Professionals?

Phil: Aboriginal people respond to other Aboriginal people – based on their history, they are more likely to trust an Aboriginal person.

We are an indigenous face to help and guide them through their cancer journey. We are also here to help the health professionals – the doctors and nurses - to understand things from the patient's point of view.

But the health professionals need to be able to listen to us. Really listen.

What health professionals need to understand is that when they are giving information out to patients it's not one size fits all. It shouldn't be a tick a box.

Some health professionals don't really talk to patients with us, some tend to go the through the admin side of things first. It would be good to open up a line of communication more – then we can explain who this person is – we've got to know them on a personal level – and their story – we can share that and see where the service can line up to help and support the patient more.

For example, can be there from the get-go to translate and deliver medical information in a way we know will be understood and accepted.

What angers me I guess, is knowing that some Aboriginal people are going through the entire process with no say in it because they don't understand it.

What do you love about the role?

Barbara: I achieve satisfaction from employing stories and metaphors to explain patients' situations. Equally, I relish the opportunity to equip them with the knowledge needed for informed decisions about their treatment.
Each individual possesses a unique perspective to offer, and I consider it truly fulfilling to assist them in recognizing their intrinsic worth. I strive to nurture a sense of self-assurance in them, emphasizing that they hold an equal standing with everyone else and are entitled to the highest standard of medical insights and care.

Phil: I love helping our people, helping our mob, and educating them and explaining things so they understand what is happening and can make an informed choice. Definitely - helping is the big one.

I enjoy giving them knowledge to empower them to make the decisions on what they want for themselves.

I also get satisfaction helping them negotiate the system – and knowing I have helped someone and made their life better.

We have experience using the system – with all these skills we can help someone; help line up the treatment and other things as well.