Jump to content
  • Tokenism in patient engagement is unethical—but it is also dangerous. A blog by Kath Sansom

    Kath Sansom
    Article information
    • UK
    • Blogs
    • New
    • Everyone


    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.


    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.

    Related reading

    ‘Mesh removal surgery is a postcode lottery’ - patients harmed by surgical mesh need accessible, consistent treatment

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

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

    4 reactions so far


    Recommended Comments

    As a rectopexy mesh effected person and support group admin I was horrified by the lack of support by NHSE after all the Information and contact details we left expressing our eagerness to help. The fact that non mesh patients were asked is absolutely ridiculous. The mesh centers are not working.I am on this merry go round. Why set up a new system set to fail. I have been on patient panels and some members contributed nothing and were chosen for other rolls, It's definitely a token panel not an environment to improve services. Great article kath. 

    • 3 reactions so far
    Link to comment
    Share on other sites

    I totally agree with Kath Sansom and Jaqui Shaw that these mesh centres that have been set up around the country ARE just token centres. What is the use of mesh centres that do not fully understand the suffering of real patients?

    Many of these centres do not have accredited surgeons who can remove mesh. Why is there no further research into so many autoimmune reactions of people who have had mesh?

    I also would like to know what is being done regarding some of the mental problems that have arisen. So many of us seem to be suffering from PTSD.

    Kath Sansom has highlighted the fact that many of the patient support groups have not even been involved in the setting up of the mesh centres! Will we ever be given an explanation for that?

    • 4 reactions so far
    Link to comment
    Share on other sites

    Excellent article Kath Sansom!   

    The same tokenism applies to hysteroscopy. 

    Womb endoscopy continues to be hideously painful and traumatic for 1 in 3 because the NHS, the Royal College of Obstetrics & Gynaecology and its little sister the BSGE, keep patients with actual lived experience of painful hysteroscopy out of meetings, consultations and research.   

    The hysteroscopy establishment prefers to silence the whistleblowers and pretend that women aren't daily screaming in pain during brutal and medieval endoscopy performed WITHOUT ANAESTHETIC.  

    The British Society for Gynaecological Endoscopy REFUSES (under FOIA) to publish the pain scores from its 'bespoke' audit of 77 clinics.  The BSGE falsely prints that most women reported "slight pain".  Yet they state that the mean pain scored is 5.2/10.  They refuse to publish the percentage of women who suffered severe pain.  Clearly they don't want prospective patients to know the actual risk of severe pain during an outpatient hysteroscopy.  And most extraordinarily ... some of the hospitals in the audit only returned ONE patient's survey!

    The BSGE exclude the Campaign Against Painful Hysteroscopy from meetings of their Ambulatory Care Network.  Could this be that they would prefer women not to know the real risk of severe pain in outpatients, and therefore not to elect to have hysteroscopy with sedation, regional or general anaesthetic?

    Maybe its time for the BSGE to form a James Lind hysteroscopy Research Priority Setting Partnership?   

    Prof Emma Crosbie ran a James Lind womb cancer research project at St Mary's Manchester.  Patients, professors, nurses, carers all gathered together to suggest and vote for the 10 most useful research questions.  Then Team Womb at Manchester got to work on answering these questions.  And guess what?  Soon a load of hysteroscopies may be redundant as vaginal swab tests are likely to be declared sensitive and specific enough to identify reliable biomarkers of womb cancer. 

    It's time for all gynaecologists to be brave and end tokenism in Patient & Public Involvement.



    • 1 reactions so far
    Link to comment
    Share on other sites

    Create an account or sign in to comment

    You need to be a member in order to leave a comment

    Create an account

    Sign up for a new account in our community. It's easy!

    Register a new account

    Sign in

    Already have an account? Sign in here.

    Sign In Now
  • Create New...