Charlotte Korte
My journey in health advocacy started when I was injured by a surgical mesh rectopexy implant in 2010. I have been helping mesh injured since 2012 to navigate the health system and raise awareness about the continuation of harm. I am still advocating to stop surgical mesh harm in Aotearoa New Zealand.
Working together with other mesh injured women, our lobbying and advocacy resulted in the government undertaking a cost benefit analysis of a surgical mesh registry, and a nationwide restorative justice project where men, women and whanau shared their lived experience of mesh injury. As a result, ACC provided a formal apology to mesh injured and the relevent agency and stakeholders are now working collaboratively together to address mesh harm.
After being awarded the Women of Influence Award for the Public Policy category in 2018, my experiences of advocating for those harmed by mesh naturally morphed into a passion for consumer advocacy in other areas of health. My work with the Health Research Council and Transparency International New Zealand in 2020 resulted in New Zealand signing the (WHO) World Health Organization Joint State-ment on the public disclosure of results from clinical trials.
In 2020 and 2021, I worked with Renate Schütte (and Prof Joanna Manning and Sue Claridge) on Renate’s Parliamentary petition requesting that the “House of Representatives amend the Health and Disability Commissioner Act 1994 to give complainants, and those that are the subject of complaints, the right to appeal decisions made by the Health and Disability Commissioner.” This work over 18 months involved hours of research and written and oral submissions.
I am currently working with a multi-disciplinary team developing an education and training program for the health sector on surgical mesh harm. In addition, I am also working as part of the International Continence Society mesh working group writing a consensus document on the management of mesh complications. I am actively involved with APHERM (Advocating Pelvic Health Empowerment and Rehabilitation for Mothers), which is a multi-disciplinary group of healthcare professionals and consumers who came together because of concerns about increasing pelvic floor disorders and injury occurring pre and post birth.
I’m excited to be embarking on our new advocacy organisation Consumer Advocacy Alliance with colleagues advocating for change in other areas of health, to ensure better health care, treatment, and outcomes for all New Zealanders.
Denise Astill
I am the Founder, Executive Officer, and a Trustee of Foetal Anti-Convulsant Syndrome New Zealand (FACSNZ), a charitable organisation that I established in February 2015, that provides support, education, awareness and prevention of fetal anticonvulsant syndromes.
As a disabled woman who has epilepsy, I am an expert by experience through my own journey, but also through advocating and navigating the system for my twin daughters who have fetal valproate spectrum disorder. They were exposed to sodium valproate (Epilim) during pregnancy, without me having been given enough information by my health practitioner to make an informed decision about my medication. This led me to lodge a claim under ACC Treatment Injury, which was accepted by ACC in 2008. This was a monumental achievement as it has led to further cases being accepted.
Since establishing FACSNZ in 2015, accepted ACC claims for FACS have over tripled. This highlights the increased awareness of FACS in Aotearoa New Zealand, and that more people are getting the support they desperately need.
Through FACSNZ I have been providing education, support and awareness of fetal anticonvulsant syndromes to families, individuals, healthcare professionals, educators, extended whanau, organisations, support groups, and governmental bodies. This has included petitions, oral and written submissions to Parliament.
I have successfully collaborated and advocated to effect change at an international, national and local level, for various projects. An international example is getting fetal valproate spectrum disorder on different coding and data systems, such as the International Classification of Diseases (ICD-11, after a visit to the World Health Organization) and SNOMED International.
In 2019 I organised the first Australasian FACS conference, with international and national speakers and attendees. I have proudly earned the nickname of Tenacious D by one of the families I support, which I love!Before founding FACSNZ I was a primary school teacher, specialising in working with children with additional needs.
As a disabled woman who has epilepsy, I am an expert by experience through my own journey, but also through advocating and navigating the system for my twin daughters who have fetal valproate spectrum disorder. They were exposed to sodium valproate (Epilim) during pregnancy, without me having been given enough information by my health practitioner to make an informed decision about my medication. This led me to lodge a claim under ACC Treatment Injury, which was accepted by ACC in 2008. This was a monumental achievement as it has led to further cases being accepted.
Since establishing FACSNZ in 2015, accepted ACC claims for FACS have over tripled. This highlights the increased awareness of FACS in Aotearoa New Zealand, and that more people are getting the support they desperately need.
Through FACSNZ I have been providing education, support and awareness of fetal anticonvulsant syndromes to families, individuals, healthcare professionals, educators, extended whanau, organisations, support groups, and governmental bodies. This has included petitions, oral and written submissions to Parliament.
I have successfully collaborated and advocated to effect change at an international, national and local level, for various projects. An international example is getting fetal valproate spectrum disorder on different coding and data systems, such as the International Classification of Diseases (ICD-11, after a visit to the World Health Organization) and SNOMED International.
In 2019 I organised the first Australasian FACS conference, with international and national speakers and attendees. I have proudly earned the nickname of Tenacious D by one of the families I support, which I love!Before founding FACSNZ I was a primary school teacher, specialising in working with children with additional needs.
Kat Gibbons
My journey in the health field began in 2012 as a volunteer with the St John Ambulance Service. In 2014, I graduated from the NZ College of Massage with a Diploma of Clinical Massage.
As a Clinical Massage Therapist I found I was often in the position of caring for clients who felt they had been let down or ignored by the mainstream health system. My path for advocacy began here.
It was furthered following the birth of my daughter which resulted in life changing injury and chronic pain. My ensuing dealings with health professionals and my fight with ACC led me to think how difficult it must be for some to access treatments and realistically advocate for themselves.
As I navigated my own pathways towards recognition and rehabilitation of birth trauma and pelvic injuries I began helping others by setting up a support group, Pelvic Dysfunction Support NZ. I have also contributed to various petitions and submissions to Government in regards to pelvic health and improved rehabilitation for mothers.
My goal in working with the Consumer advocacy Alliance is to help restore trust and meaningful and open dialogue between client and clinician and create real change so we begin to see more promising preventive care.
As a Clinical Massage Therapist I found I was often in the position of caring for clients who felt they had been let down or ignored by the mainstream health system. My path for advocacy began here.
It was furthered following the birth of my daughter which resulted in life changing injury and chronic pain. My ensuing dealings with health professionals and my fight with ACC led me to think how difficult it must be for some to access treatments and realistically advocate for themselves.
As I navigated my own pathways towards recognition and rehabilitation of birth trauma and pelvic injuries I began helping others by setting up a support group, Pelvic Dysfunction Support NZ. I have also contributed to various petitions and submissions to Government in regards to pelvic health and improved rehabilitation for mothers.
My goal in working with the Consumer advocacy Alliance is to help restore trust and meaningful and open dialogue between client and clinician and create real change so we begin to see more promising preventive care.
Sue Claridge
Kia ora, I've been a health researcher and writer for 20 years, including as a researcher/ writer for breast cancer issues with Breast Cancer Network, and as a member of the Medical Advisory Panel, Sweet Louise (Louise Perkins Foundation). I have researched and written a number of health books for commercial and non-profit clients, including on melanoma, osteoarthritis, liver and colon health; and in-depth articles, including articles on breast cancer, cervical cancer, environmental hormones/xenoestrogens, and nutrition and health.
I've been a Committee member with the Auckland Women's Health Council since 2017 and I'm currently the Communications Manager and editor of the AWHC Newsletter.
I am passionate about many health issues, but particularly informed consent in health care and treatment, patient rights, justice and equity in women's health, and the ways in which women's health and well-being suffers as the result of inequities, disparities, and sexism and misogyny in the wider global health and medical environment. Writing submissions that actual contribute to change in policy, legislation and the health system in Aotearoa New Zealand is particularly rewarding.
I have had my own experiences with adverse outcomes in health care and treatment, and inability to make truly informed decisions because health practitioners didn't give me information I needed and the downstream impacts that those issues have. I feel that many people need advocates that can help them navigate the health system and ensure their needs are met and rights upheld.
I have worked for non-profits and NGOs in a wide range of roles in both voluntary and paid capacities, and believe that my involvement in the Consumer Advocacy Alliance is an important opportunity to make a difference to the health and well-being of New Zealanders.
I've been a Committee member with the Auckland Women's Health Council since 2017 and I'm currently the Communications Manager and editor of the AWHC Newsletter.
I am passionate about many health issues, but particularly informed consent in health care and treatment, patient rights, justice and equity in women's health, and the ways in which women's health and well-being suffers as the result of inequities, disparities, and sexism and misogyny in the wider global health and medical environment. Writing submissions that actual contribute to change in policy, legislation and the health system in Aotearoa New Zealand is particularly rewarding.
I have had my own experiences with adverse outcomes in health care and treatment, and inability to make truly informed decisions because health practitioners didn't give me information I needed and the downstream impacts that those issues have. I feel that many people need advocates that can help them navigate the health system and ensure their needs are met and rights upheld.
I have worked for non-profits and NGOs in a wide range of roles in both voluntary and paid capacities, and believe that my involvement in the Consumer Advocacy Alliance is an important opportunity to make a difference to the health and well-being of New Zealanders.