Specialist mesh centres are failing to offer adequate support to women harmed by mesh (Patient Safety Learning and Sling the Mesh)

Summary

In this joint blog, Patient Safety Learning and Sling the Mesh highlight several issues with the specialist mesh centres set up by the NHS to provide treatment and surgery for women who have been harmed by mesh. We identify key patient safety issues and look at what needs to be done to ensure women receive timely, compassionate and appropriate treatment for complications they face as a result of mesh implants.

Content

Surgical mesh is a medical device implanted to support organs in various procedures. Thousands of women in the UK had mesh surgically implanted to treat pelvic organ prolapse and stress urinary incontinence, until its use was suspended due to safety concerns in 2018.[1] Surgical mesh has been linked to a wide range of serious health issues including chronic pain, incontinence, painful sex, recurrent infections, loss of mobility and autoimmune diseases. Prior to the suspension, women injured by mesh had been raising concerns about the safety of the procedure for years and campaigning for change through patient groups including Sling the Mesh.

In 2020, the Independent Medicines and Medical Devices Safety (IMDDS) Review’s report, ‘First Do No Harm’, highlighted the lack of research evidence about safety aspects of pelvic mesh, the failure of the health system to listen to women injured by mesh and a lack of awareness among healthcare professionals about mesh complications.[2] One of the key recommendations of the report was that the Government should establish specialist mesh centres to offer comprehensive treatment, care and advice, including removal surgery, to women harmed by pelvic mesh implants. In response, the NHS has now established ten specialist mesh centres across the UK—nine in England and one in Scotland.[3] However, these specialist centres are beset with problems, preventing women harmed by mesh from receiving desperately needed treatment.

Specialist mesh centres - what are the patient safety issues?

1. Long waiting lists

The mesh specialist centres have unacceptably long waiting lists, with many women being told they won’t have an initial consultation for at least a year. Kath Sansom, founder of Sling the Mesh, said, “So many women on our Sling the Mesh Facebook page are reporting really long waiting lists to be seen for a first consultation—they feel hopeless about ever getting appropriate support and treatment for their complications.”

2. Lack of awareness among healthcare professionals

Many healthcare professionals are simply not aware that mesh specialist centres exist. This is leading to women being told that nothing can be done for them, and that they are “too complicated” to deal with.[4] Addressing MPs in a Westminster Hall debate in February 2022, Alec Shelbrooke MP, co-chair of the Surgical Mesh All-Party Parliamentary Group, stated that “GPs are unaware of mesh complication centres and the referral process.”[5]

3. Surgical training inconsistencies

In a previous blog, Patient Safety Learning and Sling the Mesh outlined concerns around inconsistencies in training for surgeons performing mesh removal which is undermining women’s confidence in the specialist centres.[6] One woman also told us, “[a surgeon] did offer to remove the mesh, but I just didn’t feel confident in his care as he had only done 15 mesh removals before, and not on a regular basis.”[7]

4. Centres being run by surgeons who implanted mesh

Many women are reluctant to be treated by surgeons who spent years inserting the devices that have caused them so much suffering. Many members of the Sling the Mesh Facebook group have reported that surgeons who originally implanted their mesh did not take their concerns seriously. However, when women requested a second opinion, the mesh was often found to be causing obvious, visible damage, including slicing through nerves, the bladder and the vaginal wall, causing infections and pulling organs out of position. This breakdown in trust between surgeons and their patients undermines women’s confidence in the centres set up to treat their complications.

5. Lack of understanding about autoimmune complications

A large number of women with surgical mesh implants report developing symptoms of autoimmune conditions such as lupus and Sjögren's syndrome following the surgery.  In addition, around 50% of members on the Sling the Mesh Facebook group report suffering from fibromyalgia symptoms—although fibromyalgia isn’t currently officially recognised as a autoimmune condition, emerging studies are beginning to recognise a connection.[8] There have been small studies into the link between mesh and autoimmunity,[9] but much more research is needed to understand the issue and ensure women with these symptoms can receive appropriate treatment.

Many women report that when they tell healthcare professionals about their symptoms, the link between mesh and autoimmune conditions is not acknowledged and little support is offered. This lack of understanding is present in specialties that deal with autoimmune conditions, such as rheumatology and immunology, as well as mesh specialist centres. Autoimmune conditions can have a major impact on health and quality of life, and this is another area where women feel that the specialist mesh centres are failing to deal with the devastating effects of surgical mesh.

6. Lack of appropriate after-care

There is no guarantee for women who receive mesh removal surgery that it will improve their symptoms, and many feel that mesh centres are not offering enough post-operative support. Kath Sansom told The BMJ, “There is either very little or no aftercare, leaving some women having to go to their local [emergency department] with dangerous issues like pelvic blood clots or sepsis.”[5]

How will specialist mesh centres overcome these issues?

The Government and NHS leadership must recognise these issues and find ways to address both the shortage of provision and the lack of trust many women have in specialist centres. This will certainly involve bigger investments in training for surgeons, awareness raising amongst healthcare professionals and measures to address the damaged relationship between women and the healthcare system.

There also needs to be consistent, joined up logging of women’s outcomes following removals. This would establish a trusted database that highlights which surgeons and centres are performing well, and who needs additional training.

Another way to offer more timely care is to look beyond the NHS and give women more choice in where they have removal surgery and who assesses their case. The Scottish Government announced in July 2022 that NHS patients in Scotland would be eligible for funding to travel to a clinic in Missouri, USA for transvaginal mesh removal surgery.[10] The Scottish Government also has an existing deal with a Spire Healthcare facility in Bristol that allows Scottish women to access mesh removal surgery. The message from Scottish Health and Social Care Secretary Humza Yousaf MSP to women seeking removal surgery was that “we won’t put up any unnecessary barriers in your way.”[10] However, this option is not yet available in other parts of the UK, and some women have expressed concerns about travelling on a long haul flight after major, complex surgery. There are also worries about how aftercare would work if there were complications from a surgery performed outside of the UK.

Establishing specialist mesh centres was only the first step in addressing the issues women face in getting the support they need. It is vital that the Government and NHS increase their efforts to ensure all women have fast and equitable access to mesh removal surgery.

References

1  Devlin H. Government halts vaginal mesh surgery in NHS hospitals. The Guardian, 9 July 2018
2 First Do No Harm. The report of the Independent Medicines and Medical Devices Safety Review. Independent Medicines and Medical Devices Safety Review, 8 July 2020
3 Vaginal Mesh Complications. The British Association of Urological Surgeons website, last accessed 3 August 2022
4 Community post: Doctors shocking comments to women harmed by mesh. Patient Safety Learning , 22 June 2022
5  Wise, J. Specialist surgical mesh centres are not working, MPs are told. BMJ, 4 February 2022
6 Mesh Complications Training Pathway: Patient experiences must be recognised. Patient Safety Learning & Sling the Mesh, 17 February 2022
7 “There’s no problem with the mesh”: A personal account of the struggle to get vaginal mesh removal surgery. Patient Safety Learning, 1 May 2022
8 New study shows Fibromyalgia likely the result of autoimmune problems. Kings College London website, last accessed 1 September 2022
9 Cohen Tervaert, J. Autoinflammatory/autoimmunity syndrome induced by adjuvants in patients after a polypropylene mesh implantation. Best Practice & Research Clinical Rheumatology. 2018:32:4;511-520.
10 Dewar, C. Mesh patients to be able to travel to US for removal surgery. STV News, 12 July 2022

Related reading

Doctors’ shocking comments reveal institutional misogyny towards women harmed by pelvic mesh - a Patient Safety Learning blog
“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