Meet some of our devoted and insightful consumers who are helping Mercy Health continually improve our care and services. These stories have featured in the Mercy Health quarterly newsletter Our Voice in the past year.
A founding member of the Mercy Hospital for Women Consumer Advisory Group (CAG) and a recent addition to the Cancer Supportive Care Screening Steering Committee, Jane Power is a strong advocate for giving consumers a seat at the table. Here she shares her story with Our Voice.
“Are you sitting down?” The specialist’s tone was sombre. It was just days since Jane Power, then a
fit and healthy 56-year-old, had undergone surgery to remove a cyst on one of her ovaries.
The specialist bore terrible news: Jane’s pathology results showed she had ovarian cancer, and it was spreading.
“My world stopped turning,” Jane recalls. “I felt like my body had let me down. I was really scared; my own mother died when I was five, and it was such a high priority for me to continue being a mum to my two adult children.”
That phone call was the beginning of Jane’s cancer journey. Her specialist referred her to Associate Professor Peter Grant, Gynaecological Oncologist at Mercy Hospital for Women.
“Peter and his team became my champions,” recalls Jane, who underwent further surgery and six gruelling rounds of chemotherapy.
Six years after the initial diagnosis, Jane is now in remission and takes no day for granted. After chemotherapy, Jane’s physical and emotional health was still fragile. But throughout that period she developed a passion for consumer advocacy that has gone from strength to strength.
Soon after her treatment ended, Jane applied to join the newly established Mercy Hospital for WomenConsumer Advisory Group (CAG).
“I really wanted to make a difference for other women going through their cancer journies,” Jane says.
“Being able to contribute to outcomes and be involved in planning is so important, and as patients we have a unique perspective.”
On the CAG, Jane’s view is sought on a range of issues including quality standards, newly developed brochures, signage in the pathology collection centre and placement of hand hygiene stations.
Jane was also recently appointed as consumer representative to the Cancer Supportive Care Screening Steering Committee.
The Committee oversees screening for supportive care services for people with cancer and their families, which can include everything from physical and practical to spiritual needs.
A screening tool, effectively a ‘stress thermometer’, is offered at several points along the patient’s cancer pathway.
“No matter what process staff are following, it’s really important to remember there is always a person at the other end,” Jane says.
When Werribee Mercy Hospital launched its long-awaited consumer advisory group for mental health, Booma Abdi was among the first to apply. A former client of Mercy Mental Health, Booma has the experience and insight needed to help consumer voices shape mental healthcare.
You are a founding member of the aptly named Voices of Consumer and Carer Advisory Link (VOCCAL). What motivated you to join the group?
A strong belief that consumer voices should be heard and acted upon, formed during my own journey. I feel in mental healthcare especially, the success and/or failure of any service is based upon how much input its consumers have into its day-to-day running.
I had my first manic episode at a work function. It forced me to reassess where I was in life: started to feel I should follow a more humanitarian path. I began volunteering at Orygen, the National Centre of Excellence in Youth Mental Health, as a peer support worker. Orygen embeds consumers within its service, and involves them in activities from hiring clinicians to co-facilitating groups and training. I saw that it’s critical for services to use consumers past and present in as many aspects of the service as they can to ensure the highest possible standard of care. Eventually I decided to pursue a career in mental health, which led me to VOCCAL.
Tell us about the structure and role of VOCCAL
VOCCAL was formed to ensure consumers and carers can participate meaningfully in decisions about mental health policy, care and treatment, and the wellbeing of themselves and the community. It’s made up of equal numbers of Mercy Mental Health Consumer and Carer Consultants, and consumers and carers with lived experience of our services. We have six members, and bringing their perspectives together will serve to benefit not only the service but the community as a whole.
VOCCAL has been going for almost a year. What impact do you feel the group is having on our care and how can you see that evolving over time?
One of the earliest initiatives that came out of our meetings was offering mental health first aid training to assist a person who is developing or experiencing a mental health problem. Three VOCCAL members and three Post Discharge Support Workers were present at the training. Their family, friends, even total strangers, could all benefit from those six people having learnt these skills.
Consumer input still has a lot of potential to be tapped into at Mercy Health. There shouldn’t be any limits for consumers to help shape their services.
Consumer Advocate Viktoria Rother was a guest editor for Our Voice spring 2016.
Why did you offer to bring your perspective as a consumer to the Mercy Health table?
I’m just one of many voices in the Australian healthcare community, taking part in a conversation between the system and the consumer.
My journey to consumer advocacy started when I became very angry about the way my ailing father was treated — not by everybody, but there were certain elements along the path to his death that weren’t handled well.
If health is supposed to reflect diversity and plurality of voice, where are the older voices? That’s why I wanted to speak on behalf of people who are not always heard. For 10,000 years we incorporated our elderly into our culture and communities, and that seems to have gradually diminished. I see my role as trying to redress that balance in the conversation so that it’s not so much about the medical establishment and terminology, it’s about what I think and you think, regardless of age, culture, gender: ‘my body, my business.’ It’s very positive that services like Mercy Health want to hear consumer voices within their structures because it gives us the opportunity to change the system from the inside.
I’m always trying to think of ways to improve processes and systems; if you don’t have someone from outside the organisation to look at them, how are you going to improve? It can be hard work at times, getting up to speed on terminology and who everyone is. People sometimes need to be reminded that the healthcare system is made up of human beings with strengths and weaknesses — it’s not an inanimate thing.
As pro bono contributors, consumer advocates might be on the periphery in terms of the formal structure, but informally we’re very important, and it’s very rewarding work. I have developed a new skillset which is around listening; remembering I’m speaking for a lot of people, and not just to speak up but to step back at times and think objectively; and finding people who are interested in supporting consumer input.
I would say to other consumers: don’t wait to see advocacy roles advertised, ask your local healthcare service. Many are crying out for consumer input. Once you’re in the role, ask lots of questions. It’s a way of getting what you might need to do your job. Health professionals are experts in fields that are so important to us all. You might be overwhelmed by what you need to learn, but people love sharing their knowledge.
You know our work well. What aspects of this issue of Our Voice resonated with you?
What struck me was the word ‘help’. From chopping veggies in Cairns, to welcoming local Community to Werribee Mercy Hospital, to listening to, and learning from, one’s elders at Mercy Place Wyndham: it’s all about helping. And what a gloriously satisfying feeling it is, at the end of one’s day — working, non-working, caring, being cared for, young, old, well, ill — to consider what one has done to help another. It is the core of my work here and the very quintessence of being human.