Mesh Injured Australia Incorporated (MIA) is a new health consumer support group set up by a group of mesh-injured women in Australia who decided to put together an organisation which would support all mesh injured people in Australia. We are proud that these brave women set up this group and that Health Consumers NSW was able to play a small part in helping them. MIA is also one of our latest voting member organisation. Justine Watson is President and Co-founder of MIA.
Justine – could you briefly explain how and why Mesh Injured Australia was born?
Three Aussie mums, who have had removal surgery, decided it was time to give legitimacy to Mesh Injured Australians in the wake of the slow and poor government response to the Senate Inquiry into the “Number of women in Australia who have had Transvaginal mesh implants and related matters” in March 2018.
This international medical disaster might be the biggest we see in our lifetime. It is still very much misunderstood and unrecognised. Members have to educate their primary health carers every day – it is appalling!
Why was it so important to you and your co-founders to establish this group?
Many in our community are in chronic pain and desperately unwell, some are wheelchair and housebound due to their injuries. As a consequence, they have no voice and are unable to advocate for themselves
We wanted to include hernia mesh also, as we are seeing many cross over issues facing Australian mums and dads right across the country.
How do you help mesh injured women – and men – in Australia?
We have a 1800 toll free national hotline (1800 637433). It is manned by mesh injured volunteers to help callers identify possible injury and support them through the administration process of a surgical device injury. We offer empathy, compassion and support to callers and link them to support groups and services. Our website is currently still under design, it has a lot of resources and will help build a national registry for mesh-injured Australians.
What were the biggest barriers and challenges you faced setting up the organisation?
Our own health and time constraints. The three of us are all still recovering from ill health, chronic pain and the trauma of finding out these devices were essentially killing us before we had them removed. Two of us had to travel self-funded to the USA to ensure full removal at great personal cost, due to the lack of options in Australia and no clear pathways to full removal available.
What is the best part about taking matters into your own hands and being involved as a health consumer representative advocating for mesh injured Australians?
Personally, I have found that helping others is helping me heal from this ordeal. Something good is coming out of my seven years of ill health and the many losses I have suffered as a consequence.
What is the worst part?
Lack of awareness and having to repeatedly tell my story in order to be heard and taken seriously. Most every meeting I have with the medical profession involves me ‘having to convince’ people of my experience. It retraumatises me when I sense I am not believed and heard empathically.
How did becoming an organisational voting member of Health Consumer NSW help you in the process?
Health Consumers NSW, and especially Anthony Brown, have supported us to become a registered charity with ACNC & DGR status. They have guided us in the way forward to approach this process diligently. The industry introductions, and having Anthony with his wealth of experience at these meetings, has been invaluable.
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