SALT STUDIO &
Consultancy
Polycystic Ovary Syndrome (PCOS)
Community Workshop and
Consultation – Report
Workshop: Polycystic Ovary Syndrome (PCOS) Community Workshop and Consultation
Date and time: 19th June 2014 Thursday, 10am – 3.30pm
Venue: Minajalku Healing Centre, 11 Rossmoyne St, Thornbury VIC 3071
Attendance: 18 Aboriginal and Torres Strait Islander women, including 3 young girls (school age)
Background Polycystic Ovary Syndrome (PCOS)is a common condition in women of reproductive age
that affects up to 1 in 5 Aboriginal and Torres Strait Islander women and up to one third with a body
mass index greater than 30 kg/m2. It causes a number of reproductive and psychological problems
(irregular periods, infertility, hirsuitism, anxiety, depression, body image issues) as well as
significantly increasing the risk of metabolic issues including diabetes and dyslipidaemia.
Aims
1. To inform Aboriginal and Torres Strait Islander women in the community about PCOS
2. To discuss what they see as barriers and facilitators to appropriate diagnosis and
management
3. To determine community priorities for research, clinical care and increased awareness in
PCOS
Program
*See pg4 for final running sheet
Introduction of staff and women in attendance enabled understanding of each other’s roles and
expectations from the workshop. Many of the women were acquainted with each other, and a few
shared that they have been diagnosed with PCOS.
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Jacqui Boyle (Monash Centre for Health Research and Implementation, Monash University) provided
an overview of PCOS. This facilitated questions from the women about the conditions and symptoms,
and identified potential issues for women with PCOS. The women expressed appreciation of
obtaining specialist opinion.
Terori Hareko-Samios (SALT STUDIO & Consultancy) was invited to share her personal experience
and journey with PCOS. This encouraged yarning about barriers and enablers to accessing health
services. The women expressed that hearing from people in the community was helpful.
Melanie Gibson-Helm (Monash Centre for Health Research and Implementation, Monash University)
was invited to summarise her research findings about delayed diagnosis of PCOS. Future
recommendations for health services to engage with women in the community were sought.
Key themes identified
Issues for Aboriginal and Torres Straits Islander women with PCOS
 Lack of awareness of PCOS condition and health impacts
 Uncertainty about symptoms
 Lack of confidence in seeing a doctor and expressing concerns
 Feeling different from “normal”
 Symptoms may get worse. For example, previously able to maintain healthy weight but now
having difficulties controlling weight, or previously able to conceive naturally but now having
difficulties conceiving
 GPs/ local doctors may not be aware of PCOS prevalence in the community, leading to lack
of screening, missed diagnosis or late diagnosis
 Late diagnosis of PCOS, leading to difficulties in management of condition
 Lack of follow-up on management of PCOS
Barriers to accessing health services
 Lack of awareness/ health information
 Negative experience of doctors: short/ rushed consultation times, doctors dismissive of
symptoms or not understanding particular concerns
 Fear of procedures such as blood taking or injecting insulin
Enablers of accessing health services
 Health awareness/ health promotion/ provision of health information
 Good relationship with GP: longer consultation times, friendly doctors, acknowledgement
and understanding of particular concerns such as weight management or infertility
 Feeling empowered and encouraged to express concerns and ask questions
 Shared management plan
 Female doctors
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Future recommendations
 Health Information Day/ Workshop with Aboriginal and Torre Strait Islander women,
including health workers, liaison officers and community engagement workers.
o Targeted at smaller communities or specific population groups such as teenage girls
or mothers of teenage girls
o Example topics: Women’s Health, PCOS, diabetes, high blood pressure
o Example events: Women’s Health Day / community forums
 Health promotion & Awareness/ Advertising
o Example media: DVD, pamphlets, websites
 Support group, involving women sharing their stories with PCOS
 Specialist dedicated clinics such as PCOS clinic
 Aboriginal Women’s Health services, involving doctors and community health workers
 GPs having sufficient information on PCOS to screen and make diagnosis and management
plans, and also to train community health workers to provide appropriate care
 Group health checks, allowing women to attend clinics in a group
 After-hours services
Acknowledgement: This workshop was supported by an Interdisciplinary Research Fund from the
University of Adelaide
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Terori Hareko-Samios Trading as SALT STUDIO
ABN: 559 0754 3868
Contact us
Telephone: 0405 297 538
Email: terori_harekosamios@bigpond.com
10:00am
10:30am
10:40am
10:45am
11:00am
11:30pm
12:00pm
12:30pm
1:00pm
1:30pm
2:00pm
2:15pm
2:30
3:15
Community Workshop and Consultation on PCOS
VAHS, Minajalku Health Centre. Thornbury
19th of June 2014 @ 10:00am-3:30pm
Participants arrive – sign in
Welcome and Introduction to the day
Introduction to PCOS
MORNING TEA
WHAT IS PCOS – Yarn about PCOS
Personal Experiences – Terori to give personal story
Group Discussion – Personal Experiences
LUNCH
Barriers and Enablers to Diagnosis and Care of PCOS
Barriers and Enablers to Management of PCOS
Available Resources
Group Discussion: Need for speciality primary care services-Aboriginal & Torres
Strait Islander specific services?
Group Discussion: Recommendations for future research – Key Priorities ‘What do
women think?’
Thank you and CLOSE.
30min
10min
10min
15mins
30mins
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30mins
30mins
30mins
30mins
15mins
15mins
45mins
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