Consumer Advisory Group
This aim of the inaugural Painaustralia Consumer Advisory Group (CAG) is:
- to provide a voice to Painaustralia for the interests of people living with chronic pain
- to assist in addressing the strategic objectives of Painaustralia. The advice provided by the CAG will be used to inform the development of Painaustralia’s policy and advice that improves outcomes for people living with chronic pain.
- to assist Painaustralia in identifying gaps, barriers, strengths and opportunities for improvement in chronic pain management in Australia
- to comment on topical and priority issues requiring consumer and community engagement by Painaustralia.
This CAG provides us with an opportunity for people with lived experience of chronic pain to lead positive change for the benefit of all people living with chronic pain. CAG members will assist, advise and work together with Painaustralia to improve chronic pain management in Australia.
Sister Mary Lynne Cochrane - Chair
Mary- Lynne Cochrane is a Consumer Representative with the Agency for Clinical Innovation Pain Network and a member of the Executive Committee.
Mary- Lynne lives with a form of arthritis and over 35 years she has endured twenty-two surgeries, including three knee replacements, three hip replacements, three back surgeries, a shoulder replacement, pelvic bone transplants and surgeries in both feet and hands.
Mary-Lynne entered the Sisters of the Good Samaritan in 1977 after a period working with the Endeavour Foundation a facility for intellectually slow children. She has a background in Social Science with Welfare.
In her current role, within the Good Samaritan Congregation Mary-Lynne conducts training programs for her sister nuns in the use of mobiles handsets and iPads to enhance Communication and connect.
Last year Mary-Lynne was appointed as Wellbeing Coordinator for another religious order.
Megan Kuleas
Megan Kuleas is 31 years old and based in Canberra. Working full-time in the public service, Megan is undertaking postgraduate study and enjoys volunteering with local charities in her spare time.
Megan was diagnosed with Poly-Cystic Ovarian Syndrome and endometriosis in 2008. For most of her young adult life she suffered few to no symptoms. She has undergone a number of surgeries to treat her conditions however the operations have been unsuccessful. Megan has since been diagnosed with Adenomyosis and Poly-Cystic Ovarian Syndrome again. In 2019, Megan was also diagnosed with a heart condition as a result of her chronic pain.
Megan hopes by being an advocate for people living with chronic pain, she can provide a voice to the pain community and help to increase awareness and understanding of chronic pain and help to break down people’s assumptions of what chronic pain is. In addition, Megan aims to contribute to the ongoing work of Painaustralia to support those who live with chronic pain conditions.
Megan has one message for people living with chronic pain - it is important to remember that your chronic pain does not define you, it is only a small part of who you are!
Leah Dwyer
Leah Dwyer has lived with a chronic condition called Cervical Dystonia for 11 years. Leah is originally from Toronto, Canada and arrived in Australia in 1997. She is a Remedial Massage Therapist in Sydney.
Leah developed Dystonia after an accident at her son’s school athletic carnival. Three months later she was diagnosed by a neurologist and offered Botox and sedatives as her treatment options. She tried this for a year then decided to stop. She then began managing her pain with over the counter codeine tablets. Unfortunately, after several years she developed a tolerance and later became addicted.
After 8 years she decided to taper off of the codeine and try other pain management strategies. She became very interested in Cognitive Behavioural Therapy (CBT), Cognitive Functional Therapy (CFT), mindfulness, and pain neuroscience.
Leah is committed to teaching and helping others learn to manage their chronic pain. She is passionate about providing evidence based multidisciplinary pain management to people with chronic pain. She believes that more options must be made available to Australians to manage pain.
Don Firth
As a young man Don travelled extensively through Western Europe, and travelled to Turkey and the Azores with Scouts. After starting a forestry degree at Oxford, he travelled to Australia via N.Africa, the Middle East, Laos during the Vietnamese war and walked across Borneo. He completed his studies at ANU.
After a few years as a federal environmental statistics researcher he settled with his wife on a small farm near Bega and ran a successful wholesale/retail nursery specialising in Australian natives and food plants.
He has been a long time front line firefighter and this combined with building and farm work has taken its toll on his body and in 2011 he became a disabled pensioner.
With a full knee replacement and several back and shoulder injuries, he has been forced to greatly reduce his physical activities. Tai Chi, singing in choirs and daily spas work together to improve and maintain the fitness of both his body and mind.
He has been gradually able to reduce his dependence on pain killers and increased his physical activity. Courses in mind training and pacing are greatly helping this process.
Veteran and Invictus Games competitor, Peter Rudland
Peter is one of Painaustralia's Pain Champions, a veteran and Invictus Games competitor. Peter lives with chronic pain after surviving a helicopter crash in Afghanistan that caused severe injury and broke most of the major bones in his body. Peter is passionate about raising awareness of chronic pain and the challenges that come with it.
Kim Allgood
Kim has been working in the not-for-profit sector for over two decades; she is presently the secretary of a registered health promotion charity, having also served at executive levels on a number of community organisations. Kim’s time as a Lifeline telephone counsellor, led to further education in Community Development, and shaping her future directions.
With half a life living the reality of persistent pain and invisible disabilities, Kim’s knowledge, and broad spectrum of experiences, creates interesting coffee conversation. Hungry for further assistance and awareness for all those affected by CRPS (Complex Regional Pain Syndrome) and other persistent pain conditions; Kim and her carer founded The Purple Bucket Foundation Inc. in 2011.
Kim has come to believe, through both lived and learned experiences, a team is required for successful pain management. A team where the patient is the central figure. For this team to work together it must be built around: education, communication, trust, strength, support, faith, and honesty.
Mary Wing
Mary developed chronic neuropathic pain following spinal fusion surgery in 2004. She has been through the same journey as most people she has spoken to over the ensuing years. However, with help from her GP, physician, physiotherapist and a psychologist, she learnt how to managed her pain and in 2010 completed a Post Grad/Dip in Chronic Condition Management. Mary has also facilitated chronic condition self-management programs both here and online in the USA and Canada. In 2014, Mary was invited to join the SA Statewide Pain Strategy committee. From steering to implementation took from 2014 until 2018. She also spent a four year term with the Adelaide Primary Health Network on their Consumer Advisory Council (2016 till 2019) and their Membership Advisory Council for two of those years. Mary also founded the Adelaide Pain Support Network which, with the aid of an amazing team of facilitators, provides much needed peer support to three areas of Adelaide on a monthly basis. In 2019, Mary was invited to join the IASPs Global Alliance of Pain Patient Advocates Presidential Task Force. It is such an honour to serve on this initiative and to meet and work with people from all over the world.
Louisa O’Neill
Louisa’s chronic pain journey began at 16 when she slipped and injured her lower back. Over the years, Louisa’s pain journey has continued and in the last 15 years she has undergone 11 surgeries. Louisa is a qualified social worker and currently works part time as a telephone counsellor. Louisa suffers from a number of chronic pain conditions and as a result, has been involved in pain management rehabilitation programs and pain support groups. Louisa has also been a participant in clinical pain research studies. Louisa has a lifetime interest and has worked in suicide prevention and mental health and believes chronic pain affects the whole person. Louisa has extensively researched pain prevention strategies and as such, feels she has a lot to contribute to this group, from personal and professional experience. Louisa’s aim for this inaugural group is to work hard to provide a voice for, and to represent people living with a chronic pain condition.
Rachel Seeley
Rachel has worked in media and communications for over a decade, beginning her career in mining journalism and finding her way to a marketing role with a not for profit organisation, with a little freelance copywriting on the side.
Rachel was diagnosed with endometriosis in 2008. More recently, she has been living with adenomyosis, fibromyalgia, chronic fatigue syndrome, and joint hypermobility syndrome. She had her first surgery for endometriosis at age 23, and had her third and hopefully last surgery for the disease at age 33.
Since working in the not for profit health sector Rachel has come to realise the power of sharing personal experiences. She now feels inspired to help raise awareness of chronic pain, particularly for conditions that are often misunderstood and misdiagnosed. She believes in the importance of informed consent, second opinions, and empowering women to speak about their pain. Rachel is an advocate for kindness in the health system, and believes a whole-person approach is vital to living well with chronic pain.
Jessica Hirst
Jessica has lived with chronic pain since the start of my 20s. She can no longer work a traditional job. But as a result, she is so passionate to provide support and education to others. Jessica feels that no one deserves to go through what she has and hopes that “If I can make it easier for even one person, then my suffering has all been worthwhile.” Jessica is empathetic and always willing to go the extra mile for others. She is passionate about people understanding the role and impact of opioid based medications, as well as the life changing benefits of multidisciplinary care
Sarah Fowler
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 wholistic 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 it now and is keen to provide her insights to others living with chronic pain.
Naomi Creek
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 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
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 Pinto
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 cofounder 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 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 Styles
Jason has experience 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 enjoy this work and is currently involved in several different projects.
Maria Heredia
Maria is originally from the beautiful city of Seville, South Spain. Initially a register 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 United Kingdom. She lectured at Bath University and Warwick University in England but was forced to retired due to disability and many years of chronic pain.
Unfortunately, the offset of disability the consequence of a minor operation gone bad. Despite the difficult circumstances, she managed to keep working with chronic pain and become head of very busy university department, holding this position for years. Unfortunately, pain and medication won at 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 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 this 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 consumers advisory groups and organisations.
Janine Monty
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 totally 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 Christie
My journey with chronic pain started 14 yrs ago with a quad bike accident. At the time I was a youth worker, wife & mother to an 8yr old.
My 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. I was forced to quit work 7 yrs ago.
These jobs & studies have given me a great deal of experience. I worked for Centrelink , in a domestic violence refuge, as a mental health outreach worker & back to youth work to support young people who aren’t able to be housed by the department. All challenging roles with steep learning curves. I am currently learning Auslan (Australian sign language) to further extend my communication skills
This started the second major issue facing those who are no longer able to work due to chronic pain
The last 7 yrs I’ve fought the good fight against Centrelink & lost. Twice. I am thus forced to live in poverty, in inappropriate housing with the requirements of unemployment benefits.
I have tried many, many pain management tools, like most people who live with chronic pain. Many of them have been expensive wastes of hope. After many false starts, I have a very good GP so I am able to use the prescription medications I am most tolerant of. I have been able to mitigate most of the side effects from those medications by going vegan. The last round of updates to the doctors advisory cost me a year. Nausea, skin rashes, poor pain management & vitamin deficiency & eventual hospitalisation. I hope to contribute by avoiding another forced medication regime change.
I believe that there are some unexplored alternatives that have less harmful side effects. The conservative attitude of the federal authorities have kept them out of reach of most people who live with chronic pain. I hope to be able contribute to the base of knowledge available to decision makers