Sling The Mesh announce protest plans
Campaign group Sling The Mesh to protest against new health guidelines they believe pave the way for generations of women to be harmed.
Sling The Mesh has more than 7,500 members including people who are suffering complications as a result of mesh implant operations.
The decision to protest follows the closure of a specialist mesh removal service in London which was closed without prior warning. The campaign group claim that this closure has resulted in the cancellation of complex mesh removal operations with just a few days notice, for procedures some women had waited up to two years for.
The protests also follow the publication of the updated National Institute of Clinical Excellence (NICE) mesh guidelines which were released earlier this month.
Campaigners believe that the only way the magnitude of suffering could be revealed is for a 20 year retrospective audit to track the outcomes of every single woman who has had a mesh operation.
Professor Carl Heneghan, director of the centre for evidence-based medicine at the University of Oxford will be talking at the NICE 2019 conference in Manchester about the importance of including patient evidence to judge treatment effectiveness. Heneghan said: "Twenty years after mesh was introduced we still have no understanding of its impact on women’s quality of life, the long-term complications and who has been harmed. It is therefore vital that NICE’s national registry starts with the thousands of women who have already had mesh. Vast numbers of patients are informing how to improve healthcare; it’s about time we, the health system, listened.”
Shelley Willis whose mum Sue Moxey took her life in 2005 after suffering chronic prolapse mesh implant pain, stated: "To realise that the distress our family went through and the way mum's life was destroyed, boiled down to a mesh operation, makes me very angry. I also feel very sad for my mum who was made to feel she was a nuisance. She was confident, happy, never suffered mental health problems before, but became a shell of who she was from being in so much pain. She was the kindest woman you could ever meet, loved her friends and family but became scared and lonely because she could barely walk or go out. I am fighting as I don't want any other family to go through this nightmare."
Sling The Mesh coordinator for the Manchester rally, Joanne Lloyd said: "There must be hundreds of women like Sue around the country. Suffering and not being listened to. It's time for us to stand up and be their voice. NICE ignored patient evidence showing the catastrophic results when mesh goes wrong. Nobody knows the scale of suffering. The only way to get it is by a 20 year retrospective audit. It is morally wrong to carry on using mesh, harming more women, just to get evidence to prove how risky it is."
Sling The Mesh coordinator for the London rally, June Faircloth added: "Every day on the support page new members join who've been suffering for months or years but are told by medics they are a mystery, problems are blamed on other health issues or women are sent to psychiatrists. These women have mesh implant related illnesses like severe pain, UTIs, chronic fatigue, fibromyalgia, leg tremors, loss of sex life. It is only when women see the story in the media that they have a penny drop moment. I had my operation privately so even in a 20 year audit my story won’t be counted and I am an unknown statistic. Private hospitals don't keep a log which means many more women are suffering, like me, who won’t show up in statistics."
Kath Sansom, founder of Sling The Mesh, concluded: "Every woman harmed by mesh has been failed by the system. It has gone beyond institutional denial. It is institutional betrayal. The government and NHS are in a complete mess. They have said mesh can’t be used then that it can be (which the head of their own independent inquiry contradicted) and then they shut off the only hope of mesh removal for women whose lives have been devastated. We say get your act together. Mesh operations should be the absolute last resort once all else has failed. NICE's recommendations to carry on using mesh as standard should be ignored and women in agony seeking mesh removal must be offered real hope. This is an avoidable crisis - thousands of women are desperately seeking support and guidance and there is nothing there."
The protests will take place in Manchester and London on Thursday 9th May, 2019.
In Manchester, women will be protesting about the new NICE mesh guidelines outside the Hilton Hotel in Deansgate, from 8am to 9:30am to greet delegates arriving for the NICE 2019 annual conference.
Women will also be outside University College London Hospital (UCLH) from 12pm to 2pm to protest about the closure of the UCLH mesh removal service by surgeon Suzy Elneil which has been stopped by chief executives.