Kath Sansom - 10 problems with NHS England’s specialist mesh centres

Summary

Nine specialist mesh centres have been set up by NHS England to offer removal surgery and other treatment to women suffering from complications and pain as a result of vaginal mesh surgery, but women are reporting that they are not operating effectively.

In this opinion piece, Kath Sansom highlights ten problems with these specialist mesh centres, evidenced by the real experiences of women who are part of the Sling the Mesh campaign Facebook group.

Content

NHS England set up a handful of specialist mesh centres in April 2021 to offer treatment and support to women harmed by vaginal mesh surgery. But they aren’t achieving what they need to, and this failure is leaving thousands of women harmed by mesh without help to deal with their life-changing complications, and without hope that their pain will ever be taken seriously.

Here are ten problems with specialist mesh centres, identified through my regular contact with thousands of women suffering from mesh complications.

1. There are long waiting lists of sometimes more than a year just for the first consultation

Some women are waiting years for removal and some are being labelled ‘veteran patients’ and then deprioritised. These women are waiting an unacceptably long time to be seen. One woman recently posted on the Sling the Mesh Facebook group that she was finally having her mesh removal surgery after four years of waiting. Another described how she had her surgery cancelled, when she was in a gown waiting to be taken to theatre; this was the second time this had happened.

2. Some women are feeling that they are being coerced out of mesh removal surgery during the informed consent process

One woman said, “I was sent for an MRI scan and told my mesh looked fine but have read on the page you can't tell from scans. Now I don't know what to think”

3. Some mesh centres are being run by the surgeons who have persistently promoted mesh and denied that it causes problems

We see that behaviour continuing in consultations. One woman described her experience: “When I met the surgeon at the mesh centre I was told lots of people have had great outcomes and it felt like they thought I was exaggerating my pain.”

4. There is a lack of transparency and fully informed consent

This includes over what kind of removal is being done, and there has also been a lack of honesty over what can and cannot be achieved.

5. There is no joined up thinking in terms of how removals are performed

There is also no consistency in training; or indeed any specialist training at all.

One woman described her uncertainty about the surgeon’s skills and training: “I just didn’t feel confident in his care. He had only done 15 mesh removals before, and not on a regular basis.”

6. There is no consistency in how outcomes are logged and there are currently no published outcomes

We are told that two centres are running long term follow up, but we don't know whether centres are asking the same questions or aiming to assess meaningful quality of life issues for women.

7. There has been poor aftercare

Some women have ended up in local A&E departments with severe pain, blood clots or infections, being treated by local healthcare professionals who have not heard of mesh before. In addition, physiotherapy to mobilise scar tissue is not offered as standard, so women end up having to pay privately.

8. Some mesh centres are making women feel more anxious about becoming incontinent again, rather than focusing on the opportunity to reduce their pain through removal

One woman said, “I finally got to see a surgeon at a mesh centre and they told me I would probably end up worse off and would be incontinent again - they made me scared to go ahead.”

More research needs to be done to understand the options, and a framework should be established offering treatment that gives women the best chance of retaining continence after surgery. For example, Kelly's plication is a relatively minor procedure that can be performed at the same time as mesh removal, but not many surgeons consider it. Autologous slings and colposuspensions are also options.

9. Some specialist mesh centres are still referring women to meaningless pain clinics where they are treated as if the pain "is all in their head."

Before a removal will be considered, a large proportion of women are having to jump through the hoop of having been to a pain clinic. One woman said, “I saw the consultant today and expected to progress for removal but now I've got to do pain clinics by zoom - how is that going to help me?”

Another said, “I'm confused. I went to the mesh centre and was told that the pain is probably nothing to do with the mesh. I've been referred for counselling.”

10.The prevalence of autoimmune diseases after mesh surgery needs to be logged

We need to track the high proportion of women who develop these conditions when mesh is in place, or years later. Fibromyalgia, dry eyes and irritable bowel syndrome are the most commonly reported conditions, but we also see a staggering number of women developing ‘rare’ conditions such as lupus, Hashimotos and Sjörgens syndrome.

Many women are not being taken seriously when they raise concerns about their systemic systems and mesh. One said, “I asked if my dry eyes and fibromyalgia were autoimmune issues caused by the mesh and the consultant laughed and said my eyes were a long way from my pelvis and how can you prove the link!”

Related reading

Specialist mesh centres are failing to offer adequate support to women harmed by mesh (Patient Safety Learning and Sling the Mesh)
“There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery
‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment
Tokenism in patient engagement is unethical—but it is also dangerous. A blog by Kath Sansom