Good morning, convener and committee. Thank you for inviting us to speak today. We thank our Scottish mesh survivors, and our families and friends who are sitting behind us in the gallery, as we spare a thought for the mesh-injured women who are too ill to be here. We appreciate all the submissions that have been received in support of our petition from Scotland, England, Northern Ireland, Wales, Australia and New Zealand. As you can now see, mesh truly is a growing global scandal.
Sincere thanks go to Dr Wael Agur for giving comprehensive and compelling evidence regarding the whitewash final report. Unfortunately, Dr Agur’s experiences mirror our own in several respects. The adversity and pressure that we endured for almost three years as patient representatives in the review group came flooding back as we heard his words. We agree with almost everything Dr Agur has said. His is an accurate account of how he—and we—were marginalised, and of how vital evidence was ignored, deleted or hidden. After the independent chair resigned—much to our regret—the review group lost its focus and transparency. In fact, it completely lost its way.
When former health secretary Alex Neil asked us to participate in the mesh review, we did so despite our health issues. We did so because we firmly believed that we had a role to play in ensuring that changes were brought in such that, in the future, hundreds of women would be protected and saved from life-changing injuries such as hundreds of thousands of women around the world have needlessly suffered. We knew that nothing that we did would change the course of our own lives or those of the women who had already been injured by the devices, but we felt that we could not stand by and do nothing.
Mr Neil took one look at us in our wheelchairs, struggling to stand without walking aids. He listened and decided that we were all the evidence that was necessary: he recognised that something was terribly wrong with mesh. We believed him and trusted in him when he promised that patients would be at the very heart of the review and that we would be listened to, but through no fault of Alex Neil, those promises were not fulfilled. Our voices were not heard; in fact, once he was no longer health secretary, things changed dramatically.
We are here today to state clearly that justice was not done. Our voices were drowned out and stifled by the pro-mesh lobby, which did its best to silence and marginalise Olive McIlroy and me. Despite that, we carried on, determined as we were to bring change to ensure that women were giving fully informed consent. That is something that few of us were given—which the chief medical officer has already admitted to the committee.
When the original chair resigned from the review, things took an even more pernicious turn. Apart from the review not including us in meetings for 10 months, the proposed final report exposed women to unnecessary risks. It bore no resemblance to the interim report, which had achieved group consensus.
We went to the Cabinet Secretary for Health and Sport for help and asked that she delay publication of the report at least until our concerns had been investigated. It was to no avail. She accepted the final report and its conclusions, ignored our concerns and published the final report just 11 days after our meeting. Any hope that we had for change was completely dashed.
The final report is certainly not in our name: it is nothing more than a whitewash. We repeatedly asked that all our evidence be removed, because we did not want to be associated with the report. Our requests were ignored and denied. It is apparent to us that there was never any intention of removing our input. We were cynically used to make the report appear less biased to the public and to those of you here today. We were duped; we were used.
We are not politicians, doctors or statisticians. We are ordinary women—but we are horrified by the failure rates of an operation and by the severity of injuries that can be life-changing and life-threatening. The benefits of mesh simply cannot outweigh the risks.
Mr Neil and the MSPs who have all voiced their concerns over the issue are correct: we are all the evidence that you need to know that surgeons cannot continue to put mesh devices into women when safer alternatives are available. We fully back Mr Neil’s call for an international summit to uncover the truth about plastic polypropylene mesh, and we hope that Scotland continues to lead the way and takes a central role in this.
We ask you today to use the power that you have to ensure that the suspension of mesh remains firmly in place. You have the power to make the changes that are needed to protect patients once and for all, and to change the system so that nothing like this ever happens to other patients.
We can see that medical watchdogs across the world have been useless, toothless and far too close to the manufacturers who make billions from the medicines and medical devices that they are supposed to police. We need new health watchdogs that will insist on proof that devices and medicines are safe as well as effective. You have the power to ensure that we have proper registers and mandatory recording of data, as well as mandatory reporting of adverse incidents so that patients are not put at risk.
Please do not let what happened to all of us happen to others. Please do the right thing. Thank you for hearing our voice.