When will the Government take responsibility and meet the needs of all mesh patients? A blog by Paula Goss

Summary

Paula Goss had surgery to implant rectopexy and vaginal meshes which left her with severe pain and other serious complications. In this blog, Paula talks about why she set up Rectopexy Mesh Victims and Support to campaign for adequate treatment, redress and justice for people injured by surgical mesh. She outlines the need for greater awareness of mesh injuries amongst both healthcare professionals and the public and talks about what still needs to be done to enable people to access the treatment and support they need.

Content

In 2014 I had surgery to deal with a rectocele, a bulge between the rectum and vaginal wall, which developed a few years after I had a hysterectomy. The procedure involved implanting both rectopexy and pelvic mesh devices. I had the surgery at Southmead General Hospital and was told beforehand that this was the ‘gold standard’ treatment. The consultant told me that it would change my life—and it did indeed, for the worse. There was no informed consent process and I wasn’t told about the risks by the consultant. I wasn’t even told that it was rectopexy mesh surgery.

After the surgery my symptoms worsened and I suffered from a blocked bowel and bladder. Because of the severity of my symptoms, in 2019 I had open laparotomy surgery to remove the mesh. The surgeons couldn’t remove it all because it was too dangerous, so two protack fixation devices remain. These continue to cause me many issues, including lower back damage and pain and permanent nerve damage. My blocked bladder and bowel symptoms have improved, but I’m now being treated for recurrent urosepsis and fistula. My doctors are suggesting that they may need to remove my bowel. 

Also in 2019, I received a letter from Southmead General Hospital saying that I should never have been offered the surgery in the first place—instead, I should have been offered a posterior fascial repair without mesh. This was a real blow, as it meant all the issues I have suffered were completely unnecessary. Realising that I wasn’t the only patient in this position, I set up Rectopexy mesh victims and support.

Mesh injuries can affect anyone

We now have over 2,000 members in our Facebook support group. Mesh injuries affect men, women and even children, as surgical mesh is and has been used in a wide range of procedures, including hernia repair, breast reconstruction and rectum and pelvic surgeries.

One thing I would really like to see is wider recognition and understanding of mesh injury symptoms so that we can overcome barriers different groups of patients face in seeking help. I believe that we only see a small percentage of people who have been affected join support groups—there are many more men and women suffering with symptoms who, for different reasons, don’t feel able to ask for help. In some cases, they won’t have linked their symptoms to their surgery. Time and again, people tell me the same story of being informed by healthcare professionals that their symptoms ‘aren’t because of the mesh’. It’s very hard to challenge that view as a patient.

Equipping patients to ask questions and ask for help

Part of the solution is ensuring healthcare professionals are aware of the symptoms and issues surrounding mesh injuries, from GPs to hospital specialists. Resources like the Patient Safety Commissioner’s letter about mesh complications for patients to take to their GP are a start, but knowledge about mesh and its complications needs to be built into training and professional development for all staff who might see people with mesh injuries.

So often after patients experience harm, their confidence in doctors is shattered and this leaves individuals with a deep mistrust of all healthcare. The specialist mesh centres recently set up by the NHS were supposed to address this by providing highly specialised care. However, patients are reporting that staff at the centres sometimes display simple misconceptions about mesh injuries, and this further undermines patients’ sense of safety. I’m currently involved in auditing the mesh centres, and I am hopeful that we can make improvements so that they actually deliver the treatment and support that people so desperately need.

Campaigning for a system of redress

Our other top priority is seeing an effective redress system established by the Government for people injured by surgical mesh. The financial impact of mesh complications can be huge, as many people are left unable to work. At the moment, people have to fight to get the financial support they need to live on. For example, individuals left with disability or long term-conditions often apply for Personal Independence Payments (PIP) which is a complex process. In spite of the Department for Work and Pensions (DWP) publishing a Mesh Condition Insight Report which provides guidance on the impact of mesh injuries, many still have their PIP claims rejected. 

Legal routes to seek compensation are even more gruelling and further add to the burden of living with life-changing side effects. Patients can wait many years to hear the outcome of their case. A properly funded and well run national redress system would make it much easier for patients to receive the financial help they have a right to after being injured by a medical device. 

Rebuilding patient trust in the health system

It is hard to trust the system that caused you life-changing harm, and the NHS and Government need to take more proactive and far-reaching action to show patients that their injuries matter and that they are committed to stopping similar harms happening to others. I hope that my campaigning will contribute to real change in the culture of our healthcare system and help improve support for patients who have been harmed and their families.

Further reading

• Patient Safety Commissioner for England: Patient resource – Letter to GP on pelvic mesh complications (31 May 2023)
• Redress, research and regulatory reform are still needed: An overview of patient safety issues related to surgical mesh
• Specialist mesh centres are failing to offer adequate support to women harmed by mesh (Patient Safety Learning and Sling the Mesh)

About the Author

Paula Goss is a campaigner for people who have been injured by surgical mesh and founder of Rectopexy mesh victims and support, an online support group with over 2,000 members.