The ALLIANCE engagement to give a voice to those with lived experience of complications following transvaginal mesh surgery.
In 2019, the Short Life Working Group on Transvaginal Mesh Complications and Transvaginal Mesh Oversight Group (Healthcare Improvement Scotland) invited the ALLIANCE to undertake independent engagement work to give a voice to those with lived experience of complications following transvaginal mesh surgery.
To maximise engagement opportunities, we adopted a variety of engagement methods. These took cognisance of Scotland’s urban and rural geography while offering a menu of options to support and facilitate participation such as one to one interviews and online surveys.
In addition to this, in order to give as many people the opportunity to share their experiences and be involved in this process, we also held five pop-up cafes across Scotland in Aberdeen, Dumfries and Galloway, Edinburgh, Glasgow and Inverness.
Each pop-up cafe gave people an opportunity to drop-in at a time convenient to them to find out more about the work and to talk to the ALLIANCE staff members about participating in the consultation. In addition, there was also an option to participate in an one hour focus group which aimed to support open, respectful discussion of experiences.
All findings were included in the ‘My Life, My Experience’ report and highlighted the diverse experiences of 46 women from across Scotland. Participants shared how the surgery and its life-changing complications have impacted their physical and mental health, relationships, finances and confidence in healthcare systems. Whilst the impact of complications experienced were themed for the purpose of the publication, there was strong overlap between thematic areas with many impacting on more than one aspect of each participant and their family’s lives.
This overall aim of this engagement work and report was to capture the impact of living with complications following transvaginal mesh surgery. We found that for all the women that contributed, the complications were significant and for many life changing.
The women affected also shared their views on how to improve care following mesh procedures. The ALLIANCE is grateful to have been trusted by all women to share their experiences and views.
In late 2019, the ‘My Life, My Experience’ engagement report was submitted to the Scottish Government to inform future care and support options.
Following publication, we provided the following suggestions to the Scottish Governmment:
- The setting up of a Stakeholder Participation Group to consider and inform the future agenda;
- Consideration to be given to different mechanisms as to how women can be supported to achieve optimum health and wellbeing;
- Person-centred approaches to be put in place involving a range of health professionals.