Goals

• Create a safe space for mesh injured women.
• Help and support women emotionally and practically.
• Re-establish mesh injured women’s faith in the medical system.
• Offer a high standard of transparent care at all times.
• Care is to be tailored to the individual needs of each woman.
• Develop a consistent programme to be replicated in each State/Territory across Australia.
• Acknowledge the many losses associated with mesh injury – health & wellbeing, partners & family members, jobs and careers, the financial hardship suffered, loss of sanity and the need to find some peace and acceptance.

Intake

In order to engage women, trauma trained counsellors/social workers need to do intake, preferably in the home of a woman to capture an understanding of her life and to reduce the trauma associated with attending medical appointments and hospitals and allow space for a woman to “tell her story” via telephone or telehealth. N.B. Some mesh injured women are housebound.

All Clinics require the following:

• Need to be multidisciplinary in their approach. (see diagram)

• Medicare funded.
• A 1 “stop shop”. Able to provide multiple appointments (same day) for women who have to travel to attend the clinic.
• A support person (Intake person preferably for continuity of care and support) to attend all appointments within the clinic if required – desired.
• Be transparent in their skill set & experience  (refer interstate if necessary – e.g. Canberra refers to Sydney for removal surgery).
• Accept interstate patients and source/provide funding for travel and accommodation to enable a woman’s choice of treatment.

Services

• 3D4D ultrasound diagnostics to be performed in real time with treating specialist present.
• Continence aids, prescriptions & mobility and assistance aids supplied & funded.
• Mesh alternatives available (pessary, Botox etc.).
• Pain management services.
• Native tissue repair surgery available post removal.
• Interstate travel funding – patient assisted transport provided prior to attendance.

Clinicians

ALL health care professionals require the following:

• A broad understanding of the history of mesh and its overuse.
• To have listened to multiple women’s stories to understand the complexity and variety of issues suffered by mesh injured women.
• Have attended trauma training to support their work and their mesh injured patients. (NOT just 1 day workshops)
• Commit to working with an open and inquisitive mind and be willing to work collaboratively with Doctors internationally.
• A willingness to listen and hear every woman’s concerns for her health and treat them accordingly.
• Commit to reading a patient’s file in full, prior to their appointment.
• Show willingness to acknowledge each woman attending the clinic is experiencing multiple devastating complications as a result of mesh.

Post-Removal of Mesh

• Continence nurses to keep in daily contact with women post-surgery for as long as necessary.

• Removal surgeons to be “on call” & available post-surgery for women’s needs & for any complications that may arise.

• Rehabilitation therapy post-surgery for as long as necessary.

• Access to psychological support as and when required.

• Follow up until end of life for those that require lifelong care due to their sustained injuries.

Long Term Commitment to Mesh Injured Women

• Intensive and consistent follow up for women needing life-long care.

• Commitment to support change in medical system to avoid a disaster like this one ever happening again.

• Support to rebuild their lives or manage their outcomes effectively.

• Intensive and long-term psychological support in the forms of talk therapy, support group facilitation, residential treatment programmes (Quest For Life) available.

• Simplifying the administrative & complaints process and ensure consumer co-design in all mesh injured services.

These clinics have had consumer co-design with mesh injured women:-

Queensland – Queensland Pelvic Mesh Clinic

Queensland have had a functioning clinic since April 2019, it has been co-designed with mesh injured women and located on the Gold Coast.

NSW – RPA Mesh Clinic

New South Wales (Sydney) has the Royal Prince Alfred (RPAH) hospital in Sydney, this has also been co-designed with mesh injured women (including the author).

South Australia – SA Pelvic Mesh Clinic

SA Health has established a dedicated Pelvic Mesh Clinic at the Royal Adelaide Hospital, this has had a degree of consumer co-design.