Consumer Advisory Group

Sarah Fowler has lived with chronic and persistent pain for over half of her life. Injuries and chronic pain have been a common and debilitating feature of Sarah’s life – especially throughout her youth with debilitating pain leaving her, at times, confined to a wheelchair. 

Sarah and her family have both struggled with finding appropriate support and access to treatment and services, spending hours researching to try and work out what was wrong.  

Sarah struggled with the stigma and the lack of recognition of her condition. “People did not believe that I was in pain. I was told it was probably in my head”.  Eventually, her search led Sarah and her family to the Randwick Children’s Hospital in Sydney. 

This is where Sarah’s journey to recovery began. Combining the expertise of several different health professionals under the guidance of an experienced pain specialist, Sarah was given a holistic treatment plan based on multidisciplinary care. Her fear started to fade as she learned more about her condition.  

Sarah eventually got back on her feet after a lot of rehabilitation. Now Sarah has the tools to manage her pain without the need for a specialist.  

Sarah still has flare-ups and bad days, but she can handle them now and is keen to provide her insights to others living with chronic pain. 

Diagnosed at age 12, Naomi’s personal experience living with rheumatoid arthritis has made her a passionate advocate for others living with arthritis and chronic pain. She believes patients must have access to the right resources to understand their condition and feel empowered to manage their own health. She is a firm believer in a holistic approach to living well through healthy eating, regular exercise, medication, and reducing stress.

Naomi spent many years volunteering with Arthritis Victoria (now MSK Australia) as a community guest speaker, telephone helpline operator, consumer advisory committee member, and later a board member. She spent 10 years leading the Young Women’s Arthritis Support Group (YWASG) in Melbourne and for the last 5 years has been the national coordinator for CreakyJoints Australia.

Despite her 9 joint replacements, chronic joint infections, pain, and dissuading doctors, she moved to remote Flinders Island, Tasmania in 2018 to follow her dream. There she spends her time working part time and enjoying creative pursuits like singing, art and photography.

Gabriella Kelly-Davies is a biographer and during 2021 Hawkeye Books published Breaking through the pain barrier. The extraordinary life of Dr Michael J. Cousins, her biography of Painaustralia’s founder Dr Michael Cousins. The book attracted an avalanche of media coverage in Australia and overseas, reflecting the enormity of the issue of chronic pain in our society. Within six weeks of Painaustralia’s book launch event, Amazon Australia ranked Breaking through the pain barrier #12 in medical biographies and #27 in biographies of social activists.

Gabriella has studied biography and life story writing at the University of Oxford and the Australian National University and she is a PhD student in biography at Sydney University. She is the President of Life Stories Australia Association, the professional organisation that represents life story writers and videographers, and she convenes a Science and Medicine Roundtable for Biographers International Organization.

When Gabriella was 24 some thugs pushed her from her bicycle, triggering a lifelong struggle with occipital neuralgia and chronic migraine. After years on the medical merry-go-round, she ended up at the Michael J. Cousins Pain Management and Research Centre in Sydney where Dr Michael Cousins was her pain specialist.

For the next 13 years, Michael tried several treatment approaches, including an interdisciplinary pain management program that helped Gabriella reduce the impact of pain in her life. She learned to pace her workload and exercise, reducing flare-ups, and she started meditating and doing yoga and Qigong every day. The program helped Gabriella reduce her fear of pain and the crippling anxiety and depression accompanying each migraine attack.

As an advocate for people living with pain, Gabriella encourages anyone living with pain to search Painaustralia’s National Pain Directory for a pain clinic or pain specialist that offers an interdisciplinary pain management program.

Deirdre has three decades of experience as a government program manager, policy advisor and strategic planner. This experience spans hospital outpatient clinics, surgical services, mental health, child protection, and primary and community health. Deirdre resigned from the Victorian Public Service in April 2021, after two years with the Royal Commission into Victoria’s Mental Health Services. She is currently working as a freelance writer of health-related strategies and plans, funding submissions, and consumer information.

Deirdre is a co-founder and secretary of Chronic UTI Australia Incorporated, an organisation dedicated to improving awareness, diagnosis and treatment of a condition causing chronic bladder and pelvic pain. Her daughter suffers from this condition.

In addition to her volunteer work with Chronic UTI Australia, Deirdre served for two years as a board member for Positive Women Victoria, which is a support and advocacy group for women living with HIV/AIDS, and has volunteered as a researcher and writer for two charities for children affected by rare neurological conditions, the RE (Rasmussen’s Encephalitis) Children’s Project and the Hemispherectomy Foundation of Australia.

On a personal level, Deirdre has lived with severe endometriosis for almost 40 years.

Deirdre’s experiences have led to a strong interest in the way people unite around marginalised or stigmatised health conditions – to support each other, share their experiences and knowledge, and advocate for changes that will improve the lives of others. In 2015, she completed a large research project, for a Master of Philosophy (Population Health) degree, exploring the experiences of more than 100 Australian not-for-profit organisations devoted to rare diseases. Deirdre has since published the findings of her study in peer-reviewed journals.  

Jason has experienced chronic pain for 15+ years, in this time he has tried just about everything to try and get relief from his pain.

Jason is currently managing his pain quite well and has found a good, happy balance in his life.

The results Jason has now did not come quickly or easily, it was and still is a constant battle to obtain the right balance in his life.

Jason completed a chronic pain management course, which contained lots of useful information. However, because he had actively been seeking solutions to his pain, most, if not all the information was already known to him. The greatest value he got from the course was being able to help others to understand the value of the information and techniques provided (from someone who can understand their pain).

This led Jason to get involved in Consumer Advocacy work, focusing nearly entirely on chronic pain. He enjoys this work and is currently involved in several different projects.

Maria is originally from the beautiful city of Seville, South Spain. Initially a registered accountant in her country, she came here in her 20’s. She married and had 2 daughters while living in Adelaide for 12 years. During her first stay in Australia, she also completed various university degrees and worked in education. Work and family issues took her back to Europe. Spain first and then the United Kingdom. She lectured at Bath University and Warwick University in England but was forced to retire due to disability and many years of chronic pain.

The onset of her disability was the consequence of a minor operation gone bad. Despite the difficult circumstances, she managed to keep working with chronic pain and become head of a very busy university department, holding this position for years. Unfortunately, pain and medication won in the end and forced her to retire much earlier than expected. After living in the UK for many years, she returned to South Australia to be close to her daughters and granddaughter. 

During her first stay in Adelaide, she was heavily involved with the Spanish Community, holding various positions in the community, including secretary or radio presenter. In her second time in Australia, her commitment to community has encouraged her to be the voice in issues that are close to her heart. She is focusing her voluntary efforts in mental health and chronic pain especially, and disability within the CALD communities in general. With lived experienced in those areas, Maria hopes to contribute and share her inside perspective in consumer advisory groups and organisations.

Janine has lived with chronic pain for the last 15 years and for the last five years that pain has been severe and disabling. This is termed High Impact Chronic Pain. Her pain is the result of mixed connective tissue disease, a rare bone disease that causes spinal degeneration and nerve compression, and peripheral neuropathy.  She has PCOS and had a total hysterectomy to treat her pelvic pain from endometriosis and adenomyosis.  Janine also has eosinophilic esophagitis which causes severe gastrointestinal pain which she manages with diet.

Janine has had multiple joint surgeries and had three levels of her lumbar spine fused.  While the spinal fusion was successful in reducing pain, Janine has permanent paralysis, numbness, and nerve pain in her left leg.

Janine has tried many treatments to manage her chronic pain conditions, including physiotherapy, exercise therapy, hydrotherapy, mindfulness and meditation, CBT and ACT psychological therapies, disease-modifying medications, cortisone injections, radiofrequency ablations, multiple surgeries and procedures, and pain-relieving medications.

Janine believes in managing pain holistically with multidisciplinary treatments and has undertaken university level study in pain theory, behaviour change, nutrition and meditation, and mindfulness.  Holistic pain management takes into account the emotional, mental, and spiritual needs of the individual in addition to the person's physical state.

Pain is individual and each person requires an individual assessment and pain management plan. While some pain is intractable, the right therapies and supports allow Janine to live a full and happy life and she is passionate about advocating for those living with high-impact chronic pain. 

Alexandra's journey with chronic pain started 14 yrs ago with a quad bike accident. At the time she was a youth worker, wife & mother to an 8 year old.

Her life changed pretty quickly.

After 6 surgeries & the recoveries associated with orthopaedic surgeries, 5 attempts to go back to work & 2 attempts to go back to further study, she was forced to quit work over 7 years ago.

These jobs & studies had given her a great deal of experience. She worked for Centrelink, in a domestic violence refuge, as a mental health outreach worker, and youth work to support young people who weren't able to be housed by the department. All challenging roles with steep learning curves. She is currently learning Auslan (Australian sign language) to further extend her communication skills

This started the second major issue facing those who are no longer able to work due to chronic pain

She has tried many, many pain management tools, like most people who live with chronic pain. 

Alexandra believes that there are some unexplored alternatives for pain management that have less harmful side effects.