Brave women fighting for justice. Former Wisbech Grammar School student, now a journalism undergraduate, writes on the vaginal mesh implant scandal
PUBLISHED: 13:54 30 November 2017 | UPDATED: 14:47 30 November 2017
Former Wisbech Grammar School pupil Cesca Brindley, a journalism student at Strathcylde University, takes an in depth look at the vaginal mesh implant scandal.
Cesca, 21, was inspired to write on the mesh implant disaster as part of her final degree coursework. She has known Sling The Mesh founder Kath Sansom for nearly 10 years after attending the same school as her eldest daughter.
Cesca said “These are brave efforts of a struggling but strong network of women in campaign groups across the world.
THE MESH DISASTER
“Three years ago, I was training to cycle the Marin Trail at Snowdon and now I’ll never be able to. I can never run again, I have had to give up high board diving, I have to be careful how I walk, how I sit, how I move. And this is a good recovery.”
These words, spoken by Kath Sansom, could have been avoided.
Kath is one of thousands of women worldwide whose recommended surgery for incontinence after childbirth has torn their bodies and lives apart. Anguish and betrayal runs deep amongst the suffering groups of mesh survivors who say doctors failed to mention their “quick fix” was actually a permanent implant with the potential for organ rupture, lifelong pain and in some cases complete disability.
The treatment in question is the transvaginal mesh implant, habitually used to treat pelvic organ prolapse and incontinence after childbirth.
Women now left unable to sleep, work or raise their family were not made aware that few decent quality clinical trials were carried out to verify its safety before being permanently lodged inside of them.
Kath, journalist and mother-turned-activist had the implant in 2015 and recently removed, leaving only its stains of mutilation. Self-confessed “super energetic, super crazy”, she is now coming to terms with the fact that she will never again be the same woman.
She logs onto her Facebook support page every single day to read heart-breaking stories from women who are battling a pain that nobody can see and that no cocktail of drugs can relieve.
Some turn to alcohol to help ease the pain. Rather than giving up, Kath has spent the past two and a half years directing her energy into fighting to ensure what she describes as a “human rights issue” never ruins the life of another woman.
Once the mesh, a small plastic net-like contraption has been fitted, it has the potential to become embedded in organs, cutting tissues and causing nerve damage.
The removal process Kath described as like trying to pull chewing gum from your hair, yet the agony for some is so severe that approximately 1 in 15 women undergo surgery to do just that.
She said: “The pain is unbelievable. You literally can’t put it into words. There are women who suffer from PTSD, anxiety and depression because of it. Then we are called hypochondriacs or accused of being dramatic.”
Such attitudes spur Kath’s commitment to her own ‘Sling the Mesh’ campaign which has seen members of affected women go from 10 to over 4,500 since its creation in June 2015.
Whilst the aim is largely to stop and bring justice to those suffering, the group has provided a safe-haven for women who have lost everything, left with nowhere to turn. Kath is putting a voice to many which have until now stayed quiet.
For years several women were told that they were the ‘mystery patient’, that their horrifying symptoms were exaggerated or unrelated to the implant.
Under-reporting contributed to symptoms being dismissed, in addition to surgeons being what Kath refers to as “groomed into thinking mesh is the best thing”.
But now, the resilience and determination of women like herself coupled with increased media coverage has given confidence to many more to come forward.
The destruction goes further than its physicality and Kath spoke passionately of women who have lost everything, being brought to tears as she told me of one of the many stories which keeps her motivated to act in the face of opposition:
“I was sat there in my little newspaper office, doing something mundane, you know, writing up a charity bake sale or something. And then a message pops up from someone on the Sling The mesh page. And it’s a woman whose pain is so severe she is telling me that she just can’t go on anymore, that she wants to end her life.”
Doctors are now trained almost exclusively in mesh procedure, unable to execute traditional operations such as the Burch colposuspension which requires more time and ability.
Unaware that such options even existed, or not encouraged to pelvic floor physiotherapists, thousands of women like Kath jumped at the opportunity to receive a treatment described as low-risk, despite inconsistent data now suggesting otherwise.
Unfortunately, recalling mesh products would place the NHS in an embarrassing position of both admitting guilt in using faulty products and having insufficient numbers of doctors trained in alternative treatments.
Kath commented: “Regulation is shocking. You trust your government, the NHS, your doctors, you listen to them, only to find out there is next to no regulation at all.”
Speaking to a researcher of the ‘Transvaginal Mesh Expert Group’, who wished to remain anonymous, it is clear these feelings are not reflected amongst the medical community. She is sceptical of claims and recognises that symptoms may have arisen due to other reasons.
However until adequate investigation is carried out this cannot accurately be confirmed.
She commented: “Yes, a minority do experience complications but for thousands of others it is a successful operation”. Whilst true, for some women it was over a decade before symptoms appeared and currently, no longitudinal study exists to confirm whether all women who have had the operation won’t eventually be subject to a similar fate.
She added with certainty that the threshold does need to be “much higher” with surgery considered a last resort. She is of the belief that patients are properly informed and questioned whether it should be a government decision to deny women treatment if they want it.
“Calling for a blanket ban is taking away women’s rights to choose”, she told me, though this point is raised by the women who feel their rights were taken away when doctors misled them into potentially dangerous surgery.
Whilst the motives of women picking up the broken pieces of their lives are questioned, some are left wondering if those of the professionals should be too.
The independent inquiry which first set the ball rolling in 2014 was deemed a whitewash by the patient representatives and, despite their protests, was published in their name.
This means the political journey may be longer than hoped. Many want the outcome to see mesh use discontinued or at the very least, sufficient research and consultation to identify its risks.
Compensation for a diminished quality of life is not on everybody’s agenda.
Kath’s hope is that women never have to suffer in the same way again. She believes that they were used as guinea pigs for something with little research and certainly lacking in-depth investigation.
The treatment of women as equals appears to have been bypassed by a desire for profits.
Alex Neil, former Secretary for Health, met with me and spoke of the similar stories he had heard which urged him to take a stand. Having met with victims in 2014 he says that evidence cannot be denied.
He confirmed Kath’s belief that surgeons enjoyed weekends away with bonuses in their pockets from manufacturers who aggressively pushed the mesh to market and recognised that “the current system does not work”.
As the mesh was not subject to clinical trial before being put to market, initially its potential side-effects were not properly tested or investigated.
Alex Neil told me that unbelievably, this is legally the case due to MRHA legislation, reflecting a worrying disregard in regulation for people’s wellbeing.
Many women say this was not mentioned to them when they were told the mesh was the perfect choice.
Despite opposition, Mr. Neil was the man to call for the 2014 public inquiry into mesh treatment after seeing first-hand the devastation it had caused.
He is still working alongside campaigners who believe the final report to be missing evidence. He said that it was no more than a “moral obligation” to ensure justice is brought to them and that he has hopes for a global conference within the next year to fully address the use of mesh and its consent process.
Whilst there are women who will never again be able to live the same way, hope still exists for the future through the brave efforts of a struggling but strong network of women across the world.
The mesh survivors have their faith in the cause and are determined to ensure justice is brought.
• Cesca plans to go into a career of writing, broadcasting or investigative journalism She said: “I want to bring attention to issues like these which are too often ignored in the face of sensational news.”