Transforming Outcomes and Health Economics Through Imaging (TOHETI) is a three year Guy’s and St Thomas’ Charity funded programme. It includes NHS partners across Lambeth and Southwark who are developing a vision of imaging with patient experience at its core.

One of its  aims is to understand how they can better join up services to treat fibroids to offer the best care to their patients. As part of this work they conducted a focus group which identified that more needed to be done to empower, inform and support women with fibroids. Therefore they started a patient support group and this week we had the pleasure of being invited to attend.

TOHETI’s patient support group started in March 2016 and meets every two months. It is facilitated by a specialist nurse and aims to provide women with a safe, informal setting to share their experiences, ask questions, meet other women with fibroids, understand treatment options and learn about how best to manage their situation.

We attended the support group to learn more about TOHETI’s project and to understand how we could collaborate with them.

The women who attended the support group session told very similar stories to women we have met in the work that we’ve been doing. They explained that it took several years for them to be diagnosed and that they didn’t feel well-informed about fibroids or their treatment options. Additionally, attendees explained that fibroids significantly affect their quality of life, including their relationships and emotional wellbeing. They also felt that no one was listening to their concerns. We also briefly discussed diet with one attendee stating that when she adopted a healthy lifestyle  this significantly improved her symptoms but the challenge was maintaining this lifestyle.

Also in attendance were representatives from Gedeon Richter,  the pharmaceutical company that developed the drug ESMYA® which is used to treat fibroids. They were able to answer questions on treatment, particularly on ESMYA®, its benefits and how it works.

This was an interesting  session that highlighted the need for more support for women with fibrioids and we look forward to working with TOHETI to address this.

The next session will be on  Wednesday 5^thOctober at the McNair Centre at Guy’s Hospital. If you’d like to attend  please contact Yvonne Akande (yvonne.akande@kcl.ac.uk).