A new support group was set up for women with fibroids to gather patients’ perspective on current provision of services and also for women to be able to meet and exchange information.
Initial clinical meetings with gynaecologists, interventional radiologists, GPs and patients revealed that women are not all receiving the same access to information about treatment options for fibroids, and that more could be done to join up services between gynaecology and interventional radiology.
TOHETI worked with clinical staff across Gynaecology and Interventional Radiology to agree a joint clinical approach for patient assessment, referrals and follow-up across the two services.
Following a series of focus groups in 2015, the team worked with patients to identify opportunities to improve information, when considering treatments options for the management of fibroids. As part of this, we have developed a new patient information leaflet and video.
This piece of work has been met with enthusiasm and clearly demonstrated meeting of a real need for patients. We have worked with organisations including the Lake Foundation, a UK charity that aims to improve the health of the African and African-Caribbean community, National Voices, a charity that advocates for patient representation in health policy decisions and patient focus groups including FEmISA.
As well as being available through GP surgeries and pharmacies, and online through the Guy’s and St Thomas’ NHS Foundation Trust website – we also plan to share materials more widely through community centres, churches, and online through The Royal College of Nursing and patient support groups such as FEmISA, the British Fibroids Trust and Endometriosis UK.
To me the leaflet reads very well, highlighted in all the right places better still at a glance, my age group is included so it’s something I would definitely pick up and read.
The video. What an eye opener. I now feel I can make an educated decision on which treatment to get whereas before it felt I was on a wing and a prayer.
Having been part of the video gives me the confidence to believe what I see knowing that it’s not actors but people sharing their personal experiences.
Irene, one of the patients from our focus group who is interviewed in our video
Taking part in the focus group was an eye-opener. It showed me that I hadn’t been alone in finding it difficult to get hold of reliable information about fibroids, and in struggling to discuss my options with my doctors. Sadly, I wasn’t alone in having had a poor experience with a doctor who didn’t have up to date information about fibroids. Sharing my story was cathartic, and I learned a huge amount during the focus group.
I jumped at the chance to help TOHETI develop new materials for women with Fibroids - it’s a privilege to contribute to something that will help women make what are often really difficult choices. It’s been great to work alongside GPs, consultants, nurses, and of course other patients, to create something that should make a real difference.
Sarah, one of the patients from our focus group who is interviewed in our video
Providing clear and comprehensive information about a medical condition and the range of treatment options availble is crucial to providing a high quality medical service.
This project has succeeded in providing very comprehensive and up to date information, in an appealing audiovisual format, to patients about the range of options available to treat uterine fibroids and expected to empower patients to make a choice that is right for them. It is a privilege to have been part of the team that has conducted this project.
Yacoub Khalaf, Consultant Gynaecologist, Guy’s and St Thomas’
We were delighted to be featured as a case study in Six principles for engaging people and communities, on our work with patients to design and deliver new information on uterine fibroids.
This document, developed by the People and Communities Board and patient-centred charity National Voices, is about creating person-centred, community-focussed approaches to health, wellbeing and care. It builds on the proposed new relationship with patients and communities set out in the NHS Five Year Forward View
TOHETI has also been recognised in the 2016 South London Innovation and Diffusion awards, winning the Patient Safety Champion Award for our work on fibroids.
We are also delighted to have being awarded the 2017 Health Service Journal Value in Healthcare Award in the Obstetrics and Gynaecology section!
TOHETI, clinical staff at Guy’s and St Thomas’ and many of our patients have also been working over January to March 2017 with the All-Party Parliamentary Group on Women’s Health, led by MP Paula Sheriff, to contribute to their enquiry into informed choice for women in healthcare decisions. On Monday, 27 March, the group released a report sharing their findings that across the country women are not being treated appropriately when it comes to their physical, mental and gynaecological health.
One of our patients, Sarah Hutchinson, who attended one of our first focus groups around fibroids back in June 2015, spoke movingly about her experiences at the event. Debby Holloway, Nurse Consultant, also spoke in her capacity as chair of the Royal College of Nursing’s women’s health forum. It was fantastic to see these issues discussed in Parliament, and to hear Paula commit to the report’s recommendations of improving information nationwide, building discussion of women’s health into sex education in schools, and endorsing best practice across the NHS.
We will be continuing to work with Paula and her team (we gave Paula a copy of the Guy’s and St Thomas’ leaflet to take away for inspiration!) – and hope that this can be adapted and made available to help even more women across the country.