The Patient Voice Podcast
The Patient Voice Podcast aims to ensure patient voices are seen, heard and valued in the Australian health system. It explores real experiences of health and healthcare through the people who depend on it, and how these stories can help build better care for all. Hosted by Patient Voice Initiative Chair and patient advocate Jessica Bean, the podcast offers patients in discussion with another patient, rather than responding to questions from someone who does not live with the daily experience of being a patient.
Episodes
Genevieve Handley
"I first became involved with advocacy when I saw my parents successfully advocate for improved care at the children’s hospital, from the setup of the home IV program, to the doubling of the funding at both South Australian CF clinics. I learnt from a young age that we can inspire change and that we all have a right to the best available health care. It’s lead to me becoming extremely passion
Renee Gosney
My name is Renee Gosney, and I was diagnosed with Stage 3 bowel cancer in April 2019 at the age of 25—completely out of the blue. I underwent major surgery, 4x cycles of chemotherapy over 3 months, and about six months after completing treatment, I was told my cancer was undetectable.During my treatment, I found it difficult to connect with other young patients facing similar experiences. That led
Shyamsundar Muthuramalingam
Dr. Shyamsundar Muthuramalingam (Shyam) holds a Ph.D. in Chemistry and is a kidney transplant recipient with personal experience in Haemodialysis (HD) and kidney disease. He is a key figure in consumer engagement strategies in healthcare, working with the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health and Medical Research Institute (SAHMRI), The Georg
Kate Fisher
Kate is a bestselling author, award-winning podcast host & founder of The Milkshakes for Marleigh blood donation advocacy movement. She is on a mission to end persistent critical blood shortages in Australia and around the world. Kate’s work is inspired by her eight-year-old daughter Marleigh who lives with Autoimmune Encephalitis and is dependent on Australian plasma donors to survive. In May
Karen van Gorp
Karen van Gorp was diagnosed with stage IV melanoma in 2013 and survived through a clinical trial for a new class of treatment. She is Chair of Cancer Voices SA and an executive member of Cancer Voices Australia, where she works to strengthen consumer involvement in health technology assessment (HTA).Karen also Co-Chairs the Consumer Advisory Group to Melanoma Patients Australia and serves as Depu
Louise Grant
Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 months old, Louise went on to joi
Clare Devine
Claire Devine is a best selling artist and emerging ecommerce/personal branding authority. Her works are collected worldwide and she imbues business and art with heartfelt candour, compassion and kindness.The Granddaughter of celebrated French artists and potters, Claire was born in Toulouse, France and grew up in an art gallery space in Brisbane, Australia. A classical musician and high school te
Geoff Nyssen
Geoff is a dad, husband, blogger, public speaker and an active patient advocate. Since being diagnosed in 2014 with the terminal blood cancer multiple myeloma, Geoff uses this adversity as a means to lead by example in helping others to become empowered with the challenges that they may face. His advocacy includes working as a volunteer for Peter MacCallum Cancer Centre, Snowdome Foundation, the
Ashley Ng
Ashley is a diabetes advocate, researcher and healthcare professional. Through her lived experience, she's developed a passion for driving patient-centred healthcare service design and ensuring the lived experience voice is involved from conception to research and health service delivery. Ashley has been part of global diabetes advocacy efforts to amplify the voices of the diabetes community,
Kate Gough
Kate Gough is a passionate advocate and parent, dedicated to raising awareness and heralding improvement for those who are born with Spinal Muscular Atrophy (SMA) and their families.As the mother of baby Oakley, who was diagnosed with SMA at eight weeks old, Kate brings a personal perspective to her advocacy work, striving to improve the lives of those with SMA and their families by calling for re
Clare Stuart
Clare Stuart is the Policy and Advocacy Manager for the Mito Foundation, advocating for improvements to healthcare, disability and social support for people living with mito.She holds a Masters in Public Health and has contributed to policy development at NSW Ministry of Health and managed an Australian rare disease organisation.Clare played a key role in the foundations of Rare Voices Australia,
How living with bowel cancer drove Nicole's advocacy
Nicole is a patient advocate and health consultant. When she was diagnosed with advanced bowel cancer in March 2017, she was told she would likely die within two years.Nicole then sought a second opinion, and found another medical team who were prepared to think in an innovative and personalised way about her health. Four years later, Nicole has had amazing results!When not in treatment, Nicole is
Tanya Hall - The reality of living with heart disease
Tanya is the CEO and founder of Hearts4Heart, which she founded in 2011 through her own experience of living with heart disease.Hearts4Heart is a national organisation supporting educating and advocating for patients living with heart disease. Through Tanya’s commitment and advocacy, Hearts4Heart has grown exponentially and is now seen as an expert voice in the field of patient education and suppo
Agnes Nsofwa and her advocacy for sickle cell patients
After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to.Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes knew that greater knowledge and informa
Loss, lessons, and a lifelong legacy - Rachael Casella's story
With Rare Disease Day coming up on the 28th of February, The Patient Voice Podcast is proud to share Rachael Casella’s story. Rachael is a campaigner and activist for genetic carrier screening, IVF education, and reproductive health. After losing her daughter Mackenzie at just 7 months old to spinal muscular atrophy type 1 (SMA), Rachael realised that genetic carrier screening could have identifie
Lisa Briggs a voice of change for lung cancer
Lisa was diagnosed with lung cancer soon after the birth of her second child in 2014. At the time, she joined a clinical trial to treat her lung cancer.After being aware of the limited options and access to treatments for lung cancer patients in Australia, Lisa began to work with the major players in the field, and advocate for access to medicines.She met with the federal health minister in 2016,
Alex Parker shares her Cystic Fibrosis story
Alex Parker was born in country Victoria and diagnosed with Cystic Fibrosis at 6 weeks of age. She had a very normal childhood despite all the rigorous health routines to maintain her health.But in her early 20s, her health started to deteriorate and she was in and out of hospital with lung infections. The future looked bleak until she was able to access an innovative new medicine.However, she was
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