An enduring advocacy group is continuing to stick up for the hundreds of lives destroyed by surgical mesh.
For years, support group Mesh Down Under has pushed to raise awareness over the life-changing complications from surgical mesh.
It's been a long battle that came to a head in 2017, after a reported "soul-destroying" meeting with then National health minister Jonathon Coleman – where the group felt he failed to listen to them.
Surgical mesh is used to treat stress urinary incontinence, pelvic organ prolapses and hernias.
Hundreds in New Zealand have suffered severe injuries from the implant – with complications such as pain, infection and erosion into other parts of the body.
But endless advocating for change is beginning to bear fruit, with the group seeing a small series of victories in the past year.
The Mesh Down Under support group has grown to more than 1000 members.
A key change soon expected to be signed off by the Government is the establishment of a strict set of requirements for surgeons to meet before undertaking surgical mesh implants.
The Ministry of Health will further establish a credentialing committee for practitioners and services undertaking urogynaecology procedures.
Mesh Down Under co-founder Carmel Berry said it means their follow-up will be robust in the long term.
"That is something that will hopefully make a big difference in the future," she said.
The new credentialing framework is planned to be implemented early next year.
The changes come as part of a Restorative Justice Programme commissioned by the Ministry of Health in 2019, accumulating 19 recommendations.
Out of the 19 recommendations, 16 are complete.
Berry said one of her proudest achievements had been working with ACC to design a look-back structure for declined mesh-related treatment injury claims.
Berry said as of September 22, 97 had asked to have their claims reassessed. Forty-five have been accepted, one declined, while the rest remain under review.
"You can imagine what a massive relief it is for those people to finally have ACC support. Whether that is from loss of income insurance or ongoing medical costs – that's been a big successful outcome," she said.
The third major project the group is working on is the establishment of mesh clinics.
Based on an idea under development in the United Kingdom and Australia, the clinic would be a fully functioning, multi-disciplinary facility available particularly for women with pelvic mesh implants.
"These clinics would be a one-stop shop where they could have every service they need, not just surgical," Berry said.
The facility may include pelvic floor physiotherapy, counselling, pain management, and pharmaceutical advice, as part of pain management and ongoing social support.
Berry said it was hoped one clinic will be established in the North and South islands.
"It's now with the Government to sign off on it, appoint someone to put it together, apply money to it and get the project under way," Berry said.
A meeting is expected to be held this month to progress the plans, with Berry anticipating implementation to begin next year.
But a long road to making surgical mesh safe still lies ahead.
Berry said she still could not say if surgical mesh has improved.
"Simply, we don't know. There is still no registry recording numbers of types of mesh devices implanted in New Zealand. And patient outcomes are not reported either."
Before the pandemic, the group reached an understanding with the Ministry of Health, that each district health board would collect and submit data to the ministry.
"Then Covid hit and the MoH had to forgive the DHBs for not collecting and reporting that data, so we come to today and that data is still not being collected.
"More importantly, we are seeing more and more often, people who have had mesh put in 10, 15 years ago suddenly starting to have various complications as they age," Berry said.
The only measure the group can use is the number of claims lodged with ACC.
Information provided under the Official Information Act shows significant growth in ACC claims in the past two years - nearly $40 million of costs so far.
A Health Ministry spokesman said Medsafe was unable to provide a recent update on adverse event reports for surgical mesh procedures.
But he said only a few reports had been received since the last MedSafe report published in 2019.