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Petitioner submission of 29 July 2021

PE1865/JJJ - Suspend all surgical mesh and fixation devices

The Cabinet Secretary’s response has left me somewhat upset and angry.  It proves exactly why this petition is needed.

In it, he focuses on TVT and pelvic mesh but this petition is about all types of mesh. This is why all other mesh patients feel they are being fobbed off by our own government.

Although the Scottish Government wrote to all Health Boards in 2018 regarding sharing information with patients and giving them treatment options, this is not being fulfilled.  I was offered TVT mesh in 2018 at the gynaecology clinic, when the suspension was in place. I was offered no other treatment. I have also been battling since 2015 to get fair treatment following a hernia mesh implant.  I have had to fight so hard for better care for myself. I am getting it now, but no one should have to fight for good treatment. Still, we hear daily of women and men only being offered mesh, as the ‘gold standard’ treatment.  I'm sure if you read the submissions of this petition you will see what the reality of this ‘gold standard’ can be.

Patients have been reporting side effects and complications.  We have been ignored and gaslit every step of the way.  We have reported to the yellow card scheme, which clearly isn't fit for purpose.  We have reported to GMC and hospitals, and still with receive no support.

In general, neither surgeons nor the medical profession seem to take this seriously. Even our own government doesn’t seem to understand the extent of the problem. Who will stand up for us?

There is no clear pathway for people with hernia, bowel or any other meshes in place. Although the gynaecology mesh patients now have a pathway, most have to see the same surgeons who maimed and gaslit them. Surgeons who are now using them to practice removing the mesh they put in.

Despite supporting and working alongside the campaign for TVT/pelvic mesh, and attending every meeting with these women, the government has ignored the needs of all those with non-gynaecological mesh.

On TVT/pelvic mesh, I agree that the Scottish Government is saying the right things, but our evidence shows that it isn’t filtering down to patient care.

Fully informed consent is critical, yet I wasn’t given this and – read the submissions – it’s still not happening in many other cases.

We have examples of patients who have—

• not been given all the information about potential complications,
• not been told that mesh may potentially be used, and
• mesh implanted against their explicit wishes.

That is not fully informed consent.

The Cabinet Secretary mentions the British Hernia Society (BHS). I am a patient representative for BHS.  I should point out that the organisation—

• can't collect data from NHS patients;
• is pro-mesh, preferring mesh to natural tissue repair; and
• their database will in no way help patients being injured. 

At present, there is no training being given for natural tissue repair in Scotland.  Only mesh implant. How can patients’ have a meaningful treatment choice if there is only one option that is being offered?

In a reply to my MSP, you confirmed that you don’t—

• know the exact figures of hernia or bowel mesh operations over a 10- year period; or
• have a clear indication of complication rates or revision surgeries. 

This data needs to be collected by the NHS, as a matter of urgency. We need a database that logs all mesh surgeries and monitors if a mesh has been recalled so that patients can be informed. My mesh was recalled as it is defective, however, I only found out through being in support groups, not from the surgical team that implanted it. It needs to be monitored more closely.  My vacuum has more data kept on it than the NHS has on the device inside me.  How is that right? 

I was involved in the Scottish Health Technologies Group (SHTG) report. I don’t think that the report was promoted enough, which impacted on the number of people who shared their experiences. That said, even if they had hundreds of responses, would the report have been allowed to say the use of mesh should be restricted to life or death circumstances?  I don't think so.

I am stunned by the suggestion that there isn't enough evidence mesh is flawed. Read the submissions to this petition, look at the legal cases in the USA.

Also, the MHRA is not willing to say that they are happy with the testing on certain mesh devices and deem them safe. Does the Scottish Government have information that the MHRA doesn’t have? Why is it content for untested mesh devices to be implanted in patients?

Surgeons at the Shouldice Hospital, a specialist hernia hospital, clearly record and store their data. They have concluded that natural tissue repair is safer. Less than 1% of patients experience minimal chronic pain; 3% of herniation recurrence and, it doesn't cause a foreign body reaction. These numbers speak for themselves. 

Although exact figures aren’t available, there are over 10,000 hernia mesh operations in Scotland per year. 1 in 10 will suffer severe chronic pain. Other issues include foreign body reaction and mobility issues to name a few.