In a world of medical interventions, some procedures end up having worse complications than the problem they originally set out to fix.

This is the tragic case of surgical mesh, where a quick-fix medical device has become a source of profound distress for thousands experiencing the often-invisible nightmare of mesh complications.

Worse, many are treated like mystery patients, so battle the complications and confusion alone.

History of Sling the Mesh

Sling The Mesh campaign began in 2015 to highlight the carnage of life-changing complications and to bring together a community of people who understand each other, offering support and guidance from shared lived experience.

The original aim was to ban – or at the very least reduce to essential only – the use of surgical mesh and ensure patients were given fully informed consent. We also wanted a retrospective audit to give us robust data to gauge the scale of the scandal.

What became quickly apparent was that the same stories were being shared over and over, regardless of mesh type, with the same health care reaction of institutional denial.

Members suffer chronic and life-altering pain, mobility issues, nerve damage, infections, loss of sex life due to pain, autoimmune diseases, allergies – with a devastating mental health impact, leaving one in four members suicidal.

Not warned of risks

Nine in 10 of our members were not warned of any mesh risks.

Many were told the pain was in their heads. Nothing to do with mesh.

As media coverage snowballed, hundreds of new members joined, all being gaslit. Doctors were blaming anything other than the mesh, including menopause, gall stones or hip displacement. The worst we heard, was a doctor blaming historic childhood sexual abuse for vaginal pain in a woman in her 50s.

Other people were admonished for not dealing well with their life and referred to psychiatry, while some gave up seeking help after being sent in circles to various departments where clinicians had no idea what was wrong.

Grassroots to global

The campaign was started by former journalist and photographer Kath Sansom who had a TVT mesh sling to fix bladder leaks caused by childbirth. Instant pain and dismissal by her surgeon led her to set up the campaign, fuelled by anger at what was being done to women around the world.

Ruth MacLeod joined the campaign in a scientific and policy advice role in 2016. Ruth had transabdominal mesh surgery.

Jackie Harvey launched Sling The Mesh Northern Ireland in 2017 supported by Susan McLarnon. Members here have a unique additional layer of problems owing to healthcare being devolved. Also, there is not a No Win No Fee system, so it is much harder for the mesh injured community to take out a medical negligence case – unless they fund it themselves.

Sling The Mesh began with just 20 women and by June 2024 has more than 10,600 members from around the world. Women suffering terrible complications of pelvic mesh used for prolapse and bladder leaks, hernia mesh in women and men, rectopexy mesh and also breast mesh used in some reconstructions following mastectomy.

In the early days the aim was to raise awareness quickly with a fast-paced media campaign that ran regionally, nationally and internationally in print and broadcast titles, as well as scientific literature and on social media platforms.

It is clear mesh was aggressively rushed to market without having to undergo clinical trials – a dangerous and flawed system creating widespread patient harm.

Only once the mesh story was truly understood would our campaign have the credibility and gravitas to springboard our momentum to put pressure on politicians to back our cause.

Sling The Mesh first went to Parliament within seven months of launching in January 2016 and in 2017 held a lobby outside Westminster followed by a standing room only meeting inside Parliament attended by harmed women and their families, politicians, scientists and healthcare professionals. Professor Carl Heneghan called for a Mesh Public Enquiry at this event.

This followed with the subsequent launch of the All Party Parliamentary Group (APPG) into mesh in 2017. There have since been numerous debates and questions in Parliament and the House of Lords.

The APPG called for up-to-date NICE mesh guidelines, proper pathways of care for the mesh injured community, financial redress, improved databases to capture complications, proper hospital coding for all mesh types, strengthened regulatory systems and a retrospective audit of harmed women.

Achievements

The campaign has a suite of multi-faceted achievements thanks to being a powerful tool for lobbying and advocacy. It is also a busy support group offering camaraderie, awareness and information. The successful Northern Ireland branch of Sling The Mesh, lobbies for members in particular experiencing problems accessing care.

Achievements include:

Regular press releases and media briefing means that stories of our members have been covered in national and international mainstream and scientific media, as well as hours of broadcast interviews.

Representing patient voice at the All Party Parliamentary Group into Surgical Mesh since 2017, which has since branched into the wider First Do No Harm APPG.

Giving evidence to the Australian Senate inquiry into mesh harm in 2017.

Giving evidence on the mesh scandal to the Health Select Committee in 2022

Providing extensive evidence to a government review into financial redress for mesh injured women in the Hughes Report unveiled in 2022.

Successfully lobbied for the £1.6 million APPRAISE study, a Patient-reported outcome measure for prolapse, incontinence and mesh complication surgery. APPRAISE is a three-year National Institute of Health Research (NIHR) funded study to better support women to report the impact of pelvic floor surgery on their quality of life.

A powerful conduit for change in NHS, including setting up NHS Mesh Centres to treat complications.

Our work was pivotal in ensuring mesh was included in the Independent Medicines and Medical Devices Review led by Baroness Julia Cumberlege, resulting in the damning First Do No Harm report, calling for sweeping change in the health sector to improve patient safety. The report includes 9 Key Recommendations for patient safety.

We set up crucial grass roots locational visits for Baroness Julia Cumberlege who spoke to women and their families in towns and cities across the UK.

As part of the First Do No Harm report, Sling the Mesh provided a 240-page dossier of evidence with particular thanks to the hard work on this from Michelle Moffatt and the late Julie Loxley.

We successfully lobbied global experts in autoimmune disease and specialists on the impact of implanting polypropylene plastic, to submit evidence to the First Do No Harm review team within a section known as Properties of Mesh.

We have laid the foundations for a Sunshine Act in the UK to mandate industry to log all money given to the health sector on a central and open database, to help patients, politicians and the media assess the bias and impact made by such payments. Our lobbying resulted in a clause, known as Section 92, being added to the Health and Care Act 2022

We have helped suspend one type of mesh (bladder slings), ban another (vaginal prolapse mesh) and continue to highlight the risks of emerging new uses for surgical mesh including shoulder mesh, breast mesh and men’s mesh slings.

Our work has helped push pelvic floor physiotherapy as the credible first line of treatment for stress urinary incontinence. Our campaigning has also ensured pelvic floor physiotherapy is now on offer to all mums after childbirth in NHS hospitals across England as of April 2024.

Raising awareness of the importance of patient safety protocols to help health leaders and regulators spot trends of harm early to prevent another catastrophe continuing unnoticed for decades – including medical device analysis

Pressing for tougher oversight and data capture in both the NHS and private sectors.

Calling for tougher regulations of the private sector which we see as a wild west with limited accountability and poor outcome measures.

Calling for tougher regulatory systems, including making it mandatory for doctors to report complications to the MHRA Yellow Card system. It is currently a voluntary system, which meant two thirds of mesh complications were not logged.

Putting women’s health into the spotlight and raising awareness of misogyny in medicine – especially in gynaecology.

Giving talks at all levels from local community groups to scientific conferences such as EBM Live at Oxford University, the 4Es conference in Erice,Italy, and an International Pharmacovigilance conference in Geneva.

Urging government and regulators to put rectopexy mesh under the spotlight

What is mesh?

Mesh is a medical device made of either polypropylene plastic or biomesh made of pig or cow skin.

The mesh implant is used to help strengthen weak tissue in operations to fix prolapse, bladder leaks, hernias and breast reconstruction. It is also used in some animal surgeries.

Mesh was approved in a loophole medical device system known as “Equivalence” in Europe or the 510K system in America. It means mesh was rubber-stamp approved with no clinical trials, because it was seen as similar to something already on the market – in this case hernia mesh which had been around for years. The first mesh sling for bladder leaks was approved in 1996/1997 and within two years had caused so many problems it was pulled from the market.

But by then other bladder slings had been brought to market, using the weak medial device approval system – so it was too late.

The weak approval system includes the final straw of no post market surveillance to check if medical devices area causing problems.

It means new implants are used widely without anybody knowing if they are ruining people’s lives.

The Quick fix

Mesh is a quick fix to strengthen weak tissue. Think of a seamstress with well-trained stitching skills. Now compare this to a less skilled person using iron-on “Wonderweb” to take up the hem of a skirt or pair of trousers.

Surgical mesh appears quicker, easier and cheaper – so on paper it looks great. So it is easy to see how mesh became popular in surgical circles and by hospital accountants!

Except in reality, mesh can turn brittle, degrade, fragment, shrink, twist and cut into nerves and surrounding tissue. It can even perforate nearby organs. We strongly believe the plastic material affects our endocrine system , creating a host of systemic illnesses, autoimmune diseases and allergies.

Mesh can cause a lifetime of expensive complications in patients who went for what they thought was simple surgery – but end up having their lives ruined.

Mesh adds an additional layer of potential lifelong complications.

A Silent Epidemic

Sling the Mesh has helped break down the walls of silent proliferation and the taboo of embarrassing health issues. Many sufferers grapple with their agony in isolation, unaware that their experience is shared by countless others. It means people do not have to navigate the ordeal alone and can openly discuss topics without shame or embarrassment

Toward a Path of Healing

As awareness grows, so does the momentum for change, backed by politicians of all parties. Calls for enhanced regulation, improved patient education, and rigorous long-term studies gain traction, laying the groundwork for a safer and more transparent healthcare landscape. Empowered by solidarity and armed with knowledge, members of Sling The Mesh forge friendships and support toward healing and justice.

Conclusion: Shattering the Silence

Sling the Mesh serves as a stark reminder of the complexities inherent in medical interventions and the importance of prioritising patient safety with robust approval systems and long term outcomes data. By amplifying the voices of those impacted and advocating for systemic change, we can transform this tale of suffering into one of resilience, empowerment, and healing. Let us unite in our commitment to shatter the silence surrounding harmed patients and break down the walls of institutional denial instead paving the way for a future where patient safety comes before profits.

We do not want our children and grandchildren to be harmed as we have been.