Kath Sansom: Marking nine years of Sling the Mesh and the power of patient campaign groups

Summary

This June marks nine years of Sling The Mesh, the campaign group set up by Kath Sansom after she was harmed by pelvic mesh surgery. In this blog, Kath reflects on the valuable support the group has offered thousands of people harmed by surgical mesh. She highlights the successes the group has achieved by coming together to raise public awareness and advocate for better regulation and support for patients. She also outlines the many issues still faced by people harmed by mesh surgery and describes how Sling The Mesh will continue to press for better informed consent, greater transparency and an effective redress system for harmed patients.

Content

The value of patient-led movements in healthcare activism is hard to overstate. These movements often emerge from personal experiences of harm—they are driven by people who never planned to become agents of change, but their own experiences have made them determined to advocate for improvement and raise awareness for others.

June 2024 marks the ninth anniversary of Sling The Mesh—the campaign group I set up after I was harmed by pelvic mesh surgery. What began as an ember of anger at what had happened to me has now become a global support movement with more than 10,400 members. The group began as a campaign for women affected by transvaginal mesh, but we quickly realised there was a need to advocate for people harmed by all types of surgical mesh, including rectopexy mesh, hernia mesh and for men with mesh slings. For nearly a decade, members have offered each other information, advice and signposting via our private Facebook group. We have successfully advocated for regulatory reform and continue to press for better informed consent, greater transparency and an effective redress system for harmed patients. 

What sets Sling The Mesh apart is our commitment to our grassroots origins—we refuse to set up as a charity and remain as a pro bono patient advocacy group. We don’t want to be influenced by anything other than our first-hand experiences of life-changing harm. The campaign needs to remain free from corporate interests and political agendas.

From small beginnings, Sling The Mesh has grown into a formidable force for change. As a former journalist and photographer, I understood from the outset that we would have a struggle to get media recognition because of the taboo nature of the topic. But it was important to humanise this health scandal. We repeatedly told our members’ stories and media outlets gradually began to realise that mesh was a serious women’s health issue. It began small but snowballed, with the media covering many of our accounts of harm. Our personal experiences meant we were able to raise awareness of the devastating and life-changing consequences of mesh surgery complications. As a result, politicians began to get involved and helped highlight the issues we were raising in Parliament and amongst policymakers.

It has been incredibly hard work, but I’m proud of what Sling The Mesh has achieved so far. For me, our key achievements are:

• Raising public awareness and shining a spotlight on the issue of surgical mesh complications, ensuring that the individual stories are heard and acknowledged.
• Influencing policy by advocating for changes to the regulation of medical devices, pushing for greater scrutiny and more stringent safety standards.
• Providing support and solidarity to people affected by mesh, giving them a safe space to share their experiences, seek advice and access resources.
• Bringing together individuals from diverse backgrounds to campaign for a common goal. The sense of community we have fostered has been a source of strength and resilience to so many.
• Pushing successfully for funding for a new outcome measure for pelvic surgeries.

However, the fight is far from over—while we have made significant progress, there is still much to be done to ensure that the voices of patients are prioritised, and their rights protected within the healthcare system. Sling The Mesh will continue to advocate for meaningful change and support anyone harmed by surgical mesh.

One of our top priorities going forward is pushing for a Sunshine Payment Act in the UK, like the law that has been in place in America since 2013. This Act would legally require all manufacturers and pharma companies to report any money given to doctors, hospitals, health charities, parliamentary groups, researchers and Royal Colleges to an open database. It would be a huge step for patient safety as this database would help healthcare leaders start assessing the effects of industry money on bias in prescribing and treatment options, and how it affects research integrity.

Related reading

• The difficulty of medical negligence cases and why financial redress from the Government is so important for mesh victims
• “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery
• Specialist mesh centres are failing to offer adequate support to women harmed by mesh (Patient Safety Learning and Sling the Mesh)