Mesh lives matter - Vaginal Mesh Rally on Thursday 9 May 2019

Members of campaign group, Sling The Mesh, are protesting against new health guidelines published in April 2019 by the National Institute for Health and Care Excellence (NICE) which they say pave the way for future generations of women to be harmed.

They are also fighting to keep a specialist NHS mesh removal service in London open, after it was stopped with no warning. Some operations were cancelled by hospital chiefs just days before women were due to receive complex mesh removal procedures, some of whom had waited up to two years for surgery.

The growing mesh crisis has prompted campaigners to pressure the Government to carry out a retrospective audit to track the outcome of every single woman who has had a mesh operation in the last two decades.

They say it is the only way to reveal the magnitude of suffering, and make the call for mesh implant operations to be banned unanswerable.

The protests have been organised by Sling The Mesh, which has more than 7,500 members. Members of the group are suffering complications from a mesh implant operation to treat incontinence or prolapse, problems often caused from having babies. There are also members suffering following a hernia mesh operations.

Professor Carl Heneghan, Director of the Centre for Evidence-Based Medicine at the University of Oxford is talking at the NICE 2019 conference in Manchester, where he will discuss the importance of including patient evidence to judge treatment effectiveness.

He 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, of Dorchester, whose mum Sue Moxey, took her life in 2005 after suffering chronic prolapse mesh implant pain, will be joining protestors at the London event. She said: "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."

Joanne Lloyd, of Warrington, Sling The Mesh coordinator for the Manchester rally 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."

June Faircloth, of Clacton, Sling The Mesh coordinator for the London rally, said: "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, of March, Cambridgeshire, founder of Sling The Mesh, said: "Today we are fighting for justice for every woman harmed by mesh and failed by the system. It has gone beyond institutional denial. It is institutional betrayal. The Government and NHS must step up to the mark and show proper leadership. First they said mesh was safe, then it wasn’t. Then they contradicted the head of their own independent inquiry by backing NICE guidelines which did nothing but muddy the water further. Then they robbed women of a vital life-line by suspending mesh removal surgeries.

“Working in partnership with Thompsons Solicitors, we’ve already written to every NHS Trust urging them to ignore NICE's recommendations to carry on using mesh or face legal action. This is to stem the tide of the crisis, and prevent further patients from being put at risk.

“Today’s protest is about standing up for the women whose lives have already been torn apart by mesh and who desperately need access to support, guidance and – crucially – the hope of a mesh removal that right now, just isn’t there.

“We say, don’t ‘temporarily’ suspend the removal surgery designed to alleviate women’s pain. Permanently ban the surgical mesh procedures that – in the vast majority of cases – are in fact the most high risk option of a range of safer, better alternatives.”

Owen Smith MP, chair of the All Party Parliamentary Group into Mesh, said: “Thousands of women have faced life-changing injuries following mesh surgery and they must not be ignored by NICE or the NHS. For years I have called for a national registry of all mesh procedures and until we have accurate data on the complications associated with mesh, it should not be used. The new NICE guidelines fail to clearly outline that mesh should only be used once conservative methods have failed and when non-mesh surgery has failed. It is vital that a proper continence care pathway is established, with mesh surgery as a last resort.”