Last week, Health Secretary Jeremy Hunt announced a review into the vaginal mesh health scandal along with two other serious health scandals, the pregnancy test Primodos and epilepsy drug Sodium Valproate.
Awareness of the mesh health scandal had largely gone unnoticed and unreported here in the UK until last year when campaign group Sling The Mesh, started to garner press and media coverage on the vaginal mesh scandal. But this isn’t the only polypropylene mesh kit on the market, currently causing widespread harm and debility to patients. This material is also used in mesh kits for rectopexy repair and hernia repair surgeries. There are an alarming number of similar complications in all three of these procedures, and campaigners are disappointed that these issues are not being fully investigated or reviewed together.
The health secretary, under the advice of Chief Medical Officer Professor Dame Sally Davies, has announced that there will be no ban or suspension of mesh use while the review is being carried out. This is despite NICE recommendations that the use mesh for vaginal wall prolapse should be suspended and only used in the “context of research”.
There is an issue with our regulatory and healthcare system, as the Health Secretary and Chief Medical Officer declared last week. The MHRA operates around legislation that seeks to promote the corporate interests of industry over patient safety. Pharmaceutical companies have developed excellent marketing strategies to lure the medical community to accept minimal proof of benefit over risk. This begs the question; Who does our regulatory board serve; patients or big pharma? Ask yourself; who benefits and who is hurt?
The benefits cannot outweigh the risks when no one is being honest about those risks in the first place. To stand by that claim and ignore the real-world evidence that mesh injured patients present adds further insult to injury. In the case of vaginal mesh, there are recent studies that totally blow the official regulatory complication rate figure of 1-2 %. The use of trocar needles to blindly insert this toxic plastic into our bodies during the procedure are now known to have a complication rate of 40%. 40%, not 1 or 2% – and you still say the benefits outweigh the risks. We need meaningful actions from government, not sad eyes and platitudes.
The review of mesh, Primodos and Sodium Valporate has been appointed to Conservative peer Baroness Cumberlege. Her business Cumberlege Connections, offers a commercial training programme on “Politics, Power and Persausion” with an exclusive “Westminster package” where clients can learn how parliament works, how to talk to politicians and how to influence legislation. This alone, makes her an unsuitable candidate to head this review. Clearly there is a conflict of interest here, and any review by Baroness Cumberlege cannot in good faith be considered impartial.
As far back as 2010, then Prime minister David Cameron warned that lobbying would be the next great political scandal. He was right. This is at the heart of these health scandals, and until this becomes part of the conversation, our faith in this government to do the right thing by victims of dangerous drugs and medical devices is minimal.
Injured patients have been campaigning to raise awareness of mesh complications for over a decade in the UK and if we must do it for ten more years, we will. There is zero chance that we are going away if the UK continues to use these dangerous medical devices in the treatment of non-life-threatening health complications like pelvic organ prolapse, stress urinatory incontinence and hernia repairs in otherwise healthy women and men.
As someone injured by vaginal mesh for stress urinary incontinence in 2009 at the age of 36, this devastating health crisis has shaped my whole world ever since I woke up in the recovery room in tremendous pain. Like Thalidomide, mesh devices came to market without rigorous safety testing or human trials. Unsuspecting patients are the clinical trials, the lab rats, the guinea pigs.
WE ARE THE REAL WORLD CLINICAL EVIDENCE AND WE ARE NOT BEING STUDIED; WHY?
THE MHRA HAS WILFULLY NEGLECTED TO PROTECT PATIENT SAFETY; WHY?
This is abuse. There have been well over 1,000 deaths globally from mesh medical devices already. Where is the public outrage? Mesh injured patients suffer from severe debilitating complications, including loss of organs, loss of bladder and bowel control, severe inflammation, nerve damage, erosion of mesh into organs, autoimmune diseases like lupus, sjorgrens syndrome, chronic fatigue and chronic pain. Fibromyalgia is another known complication from exposure to mesh implants. Sepsis and organ failure have already taken many mesh injured too young, leaving young children without their mothers in many cases. There is more to this story than women losing their sex lives or the issue of consent process.
Complications associated with all mesh medical devices are severely debilitating and campaigners now believe that some of these complications are progressive. Patients with mesh complications need to be seen at the earliest opportunity due to the threat of overwhelming infections that their immune systems cannot deal with. Many patients are already antibiotic resistant in the UK. The death toll from mesh use is predicted to rise in the coming years, as an increasing number of patients are suffering from chronic infections. Immunity to oral antibiotics are increasingly putting patients at risk of sepsis, which is a leading cause of death.
The lack of trained and experienced surgeons to remove mesh implants is especially pressing in this regard. With only a few experienced surgeons available throughout the UK, the wait time for removal surgeries has steadily increased as more awareness of the scandal in the media has alerted other women to the issues with vaginal mesh. There are issues of cross-border funding as many women have no experienced removal surgeons in their area, and some patients are struggling to get cross-border funding if they need to travel to London for surgery. These issues must be prioritised in the care of those of us who are the victims of this health scandal. We have been denied and ignored enough. We need to see action, not just hear about intention.
We also need justice for victims. There is no moral reason why the truth should be time barred. Mesh victims need to be treated in the same way as thalidomide and asbestos victims. A compensatory scheme should be set up by government and legal aid should be made available to those who need it. There should be no expiration date on justice for any victims!
Many mesh victims are unable to work and remain financially independent. These patients need to be able to access ESA and PIP benefits, but our complications are not recognised, and the criteria to assess debility has nothing to do with how ill we are. Yes, we can lift our arms above our heads, but we cannot walk, sit or stand for any length of time. We are in crippling pain, and most of us live lying down on the bed or sofa, because it is the only comfortable position to even just exist in. This has been done to us. We are not liars and scroungers, but we are made to feel that way repeatedly.
We need you to ensure patient safety issues are met with full transparency and no conflicts of interest. It is your moral imperative to dismantle and oppose the institutional corruption at the root of this health scandal. We are asking you to look at the science, to look at the aggressive marketing of innovative medical devices that haven’t been through human trials, to look at the evidence that shows that polypropylene mesh isn’t inert in the human body. This is the same plastic that is destroying our oceans and marine life for goodness sake! Patient safety must be valued more than shareholder profits by industry and government. We are calling on government to have a full public enquiry into this scandal. It is the moral thing to do.