Summary
In this opinion piece, Kath Sansom, Founder of the Sling the Mesh Campaign, argues that when health services fail to engage meaningfully with patients it causes patient safety issues. Drawing on her own experience as a patient and the founder of a large patient support group, she talks about the invaluable perspective that patients who have experienced healthcare harm can offer policymakers. She also explains why it is important to hear from a wide group of patients who have experienced a variety of issues.
Content
After years of struggle to get our voices heard, the final report of the Cumberlege Review gave women harmed by mesh a ray of hope that perhaps help, and redress, were at hand. The report recommended that the NHS establish specialist mesh centres across the country to provide mesh removal and other treatment options to women suffering from debilitating complications as a result of pelvic mesh surgery.
As Founder of Sling the Mesh, I was keen that our 9,000+ members were involved in the process of designing how these specialist centres would be set up. It had taken us a long time to get here and we knew our voice had made a difference to patient safety; it was our concerns as patients that had brought incontinence mesh surgery to a halt and resulted in a ban on vaginal prolapse mesh surgery.
The huge group of women who belong to Sling the Mesh and other patient support groups had valid questions and concerns about how the centres would run, and how they would ensure swift and beneficial access to the treatment they so desperately needed. It was absolutely essential that NHS decision-makers understood the range of issues women were facing—from the need for removal to dealing with the autoimmune conditions women were developing after mesh surgery.
A tokenistic approach to patient engagement
So in November 2020, I established contact with the commissioner in charge of setting up the centres and they agreed to meet with me and members of Sling the Mesh. This meeting was postponed several times and eventually cancelled. Instead of maintaining direct contact with me, the commissioner put me in touch with a communications colleague. No meeting—or any form of meaningful engagement—ever happened.
Reading through the stakeholder engagement document, it appears that of the three women who were engaged as patient representatives, two had not had mesh surgery. The one who had was not engaged in any support groups, and this will have limited her ability to raise the wide range of issues and concerns faced by women harmed by mesh. I couldn’t believe that this was the NHS’s choice of patient voice, over the several active and well-engaged mesh patient support groups that are so easy to find. I’m left wondering why they chose not to engage with us.
Lack of patient voice leads to further patient safety issues
The outcome of the specialist mesh centre process has been incredibly disappointing to women harmed by mesh. A recent blog by Patient Safety Learning and Sling the Mesh outlines some of the key issues—problems that could have been foreseen and potentially avoided by engaging with a more representative selection of end users during the commissioning process.
When setting up a service, failure to engage with the patients it is being designed for creates serious risks to patient safety. Lived experience of patient safety issues is not an additional 'skill' to be added into the mix of voices; it comes from painful loss and is often offered to health services and commissioners at great personal cost. The suffering of people who have experienced harm motivates them to prevent it happening to anyone else, and is grounded in a reality that no surgeon, policymaker or politician can comprehend.
That’s why it’s important not to choose the easy way out when it comes to patient engagement; the voices that can really speak with authority on the issues need to be front and centre when developing services. This is especially vital in cases like vaginal mesh where it has taken governments and the NHS so many years to listen to patients’ concerns. As people harmed by a medical device we were told would help us, we know the life-changing consequences of healthcare harm, and will do everything in our power to seek the right level of support for victims and prevent it happening again.
A safer approach to engaging patients
We need to see a change in the way policymakers view patient engagement. There may be fears within NHS management that the observations and requests of patient representatives will stretch resources and have the potential to cause reputational damage. But if we don’t start seeing those voices as essential, we will never make meaningful progress in improving patient safety.
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