Hansard

Like many others, I pay tribute to the incredible efforts of the mesh survivors in bringing this issue to light in order to secure justice. Their bravery and determination are an inspiration to us all.

I also want to mention the efforts of the MSPs who have raised the issue previously, including the “meshketeers”—Jackson Carlaw, Neil Findlay and Alex Neil. I know that all three have been champions of the issue for a long time.

The final report of the transvaginal mesh case record review carefully sets out what a long journey it has been for mesh survivors and how far we still have to go to restore justice fully. I want to focus on a few of the report’s findings and how they relate to transparency and the rebuilding of trust.

One such finding is that, in a number of cases, there was a lack of clarity in the case records. Some notes were misleading, while others

“did not bear any reflection to the surgery that had occurred, nor its outcomes.”

The report notes that, in some cases, misleading or missing information from case records led to a breakdown of trust between the patient and their clinician, as women felt that they could not trust what was in their records. That lack of trust fed into many wider areas within the NHS. One quote from the report stands out:

“I’ve lost a lot of trust in the NHS and that doesn’t just apply to mesh. It applies to everything”.

The health service is meant to care for us and to keep us safe and well. I cannot imagine the betrayal that some of the women must have felt.

Rebuilding trust will necessarily be a long process. The report makes a number of recommendations in that regard, such as organisations providing patients with an explanation of why certain information has been redacted and keeping a detailed set of medical notes of the dialogue between clinicians and patients. I would appreciate it if the minister could set out any work that is being done to provide that to patients.

Another important point that is made in the report is that we need to continue to listen to the women who are affected by mesh. It states:

“Having to exclude the lived experiences of the women from the practicalities of what could be evidenced in the case records, has made the Panel realise that the mechanics of a case record review cannot address the more nuanced parts of a lived experience ... Something more inclusive is required”.

It is essential that we continue to listen to and record people’s lived experiences in order to gain a comprehensive understanding of the impact of transvaginal mesh. The case record review provides us with valuable evidence about what went wrong and where improvements can be made, but it cannot capture the pain, anguish and frustration that many mesh survivors have felt. We need to support them to tell their stories, not only so that we can learn from them but because they deserve to be heard.

Many of the personal testimonies that are included in the report were heartbreaking to read. Women described feelings of awkwardness, shame and embarrassment, as well as a loss of autonomy and self-worth. Many cited social isolation as a result of mesh complications, and that isolation will inevitably have been worsened by the Covid-19 pandemic. Some find themselves having to plan going out around when and how they can access a toilet, or having to explain to friends and family members that they are unable to sit for long periods of time.

Those involved in the review spoke to women who are now being advised by clinicians that nothing more can be done for them surgically, which might result in additional trauma. The report illustrates the importance of providing mesh survivors with wraparound support that addresses their emotional needs as well as their physical needs. In the Health, Social Care and Sport Committee and in the chamber previously, I have spoken about the need for on-going mental health support for mesh survivors. They need targeted, specific counselling that takes account of the trauma that they have experienced.

We also need to ensure that people are properly supported to engage with information gathering. Those involved in the review heard from women who described their fatigue at continually having to tell their stories. One woman said:

“Wherever you turn you just don’t feel heard. You really don’t. It’s like here’s another survey or here’s another whatever, you know? The wee bit of energy you’ve got you are trying to fight to help”.

People need to know that action is being taken as a result of their sharing their story. The worst thing that we could do is cause people to disengage with the process. It has been such a long road for them, and they have had to fight every step of the way.

The report identifies several steps in the patient journey where improvements can be made. One example relates to the referral process. The report characterises the operation of the referral system as “confusing”, with the need for

“further explanation so that it is clear where the responsibility for patient care may lie at any given point and what might be expected from their care journey.”

I will end by once again paying tribute to mesh survivors. As the motion states, there is

“continuing improvement in support, informed by the views of affected women”.

We are taking significant steps towards righting a terrible wrong. The report highlights the importance of centring lived experience as we continue on this journey.