Uterine fibroids is one of the most common gynaecological problems in the UK, and symptoms can be severe and damaging to a woman’s quality of life. Variation in access to information and late diagnosis can mean unnecessary suffering and limit treatment options.
We worked with women across South East London to develop a new patient information leaflet and video, to raise awareness and empower women’s conversations with healthcare providers. 10,000 copies have been distributed to GPs and pharmacists, and materials are available online. A new patient support group has been established in response to the call for better peer-support.
•Initial meetings with gynaecologists, interventional radiologists and GPs highlighted a lack of wider awareness, openness and understanding of uterine fibroids, even though the high incidence in African-Caribbean populations means there is a particularly high prevalence of this condition in our local population of Southwark and Lambeth.
•Fibroids can have a severe and damaging impact to a woman’s quality of life, affecting emotional wellbeing, relationships and ability to perform normal daily activities. Variation in access to information and late diagnosis can mean unnecessary suffering and limit treatment options. There was a need to increase GP awareness of fibroids and their different treatment options, to facilitate earlier recognition of fibroids and their symptoms and enable more clinical choice.
•Information on the internet around fibroids was often inconsistent, or lacked authority. Survey data has shown that almost 75% of the UK population has searched for health information using the internet (London School of Economics and Bupa, 2010), often ahead of consultations with primary or secondary care providers (Baker et al, 2003; Ankem, 2007).
•Where surgical intervention becomes necessary, the main options are hysterectomy and myomectomy (performed in gynaecology) and uterine artery embolisation (UAE), performed in Interventional Radiology. Studies looking at how women obtained information on uterine fibroids showed that accessing information on UAE was often difficult, and this treatment option was often not discussed by gynaecologists (Voogt et al, 2010).
•We believed there was a need to increase patient awareness of fibroids and their treatment options, and empower women’s conversations with their primary and secondary care providers.
•We ran four focus groups during June 2015 in locations across South East London reaching 27 patients to find out more about their experience seeking treatment for fibroids. Many women told us they felt that they lacked a voice in the decision making regarding their treatment. We found women also found it helpful and supportive to talk to one another about their experiences: one session scheduled to run from 5:00-6:30pm did not finish until 10:30pm.
•We brought together a pathway redesign group to address the clear call from patients for earlier access to better and more consistent information about fibroids. We invited one of the patients from our focus groups to act as the group chair, also drawing on her professional experience working for the patient advocacy group National Voices. The group included internal and external stakeholders: gynaecologists, interventional radiologists, GPs, consultants from referring trusts, and an executive lead from the Trust.
•We facilitated the development of a new patient information leaflet and video, working closely together with clinicians and four patients from our focus groups. The patients were also featured through short interviews in the video. These are now available in GP surgeries, pharmacists and online through the Southwark, Lambeth and Lewisham GP data information systems and the Trust website.
•We built up relationships with patient 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. We also worked with Gedeon Richter - the Pharmaceutical company who manufacture the drug Esmya.
•A new patient support group has been established in response to the call for better peer-support from the focus groups. This is held every three months at the McNair Centre, Guy’s Hospital, and includes a presentation from an invited speaker.
•A new patient information leaflet and video, distributed to over 250 GP surgeries and 400 pharmacies across Southwark, Lambeth and Lewisham, to our referring Trusts, and online through GP data information systems and the Trust website. 10,000 copies of the leaflet will be distributed in total. The materials are also available on fibroids patient group websites, and the Royal College of Nursing website.
•Awarded the Patient Safety Champion Award, South London Innovation and Diffusion Awards 2016, for the work the project has done in listening to, and empowering, women who have uterine fibroids. Showcased poster on this work at conferences including the HSJ Patient Safety Congress 2016, the King’s Health Partners Safety Connections Conference 2016 and the International Forum on Safety and Quality in Healthcare, 2017.
•Featured as a case study for patient engagement in ‘Six principles for engaging people and communities’, developed by the People and Communities Board and patient-centred charity National Voices.
•Ongoing relationship with patient groups The Lake Foundation and the Fibroids Network, supporting and attending local events and twitter chats.
•Media interest and coverage of patient stories through the Daily Mail and Sunday Mirror as well as other news outlets. The BBC Victoria Derbyshire show interviewed our former Deputy Medical Director, John Scoble, about the project and how it was meeting patients’ needs.
Costs incurred are as follows:
Video production £10,080
Leaflet design £1,340
Initial print run of leaflet copies £1000
Focus groups £500
“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 whereas before it felt I was on a wing and a prayer.” Irene, patient
“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. Sharing my story was cathartic, and 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, patient
From the sonographers side, it’s nice to have a visual aid and to feel we are giving more information than ourselves and often GPs would have time to go through in an appointment. Sharon Dam, Superintendent Ultrasonographer
Uterine fibroids is one of the most common gynaecological problems in the UK. Over 40% of women will develop fibroids at some point in their life, with the highest frequency in women aged 30 to 50 years. For some women, symptoms can be severe and damaging to their quality of life. The high incidence in African-Caribbean populations means there is a particularly high prevalence in our local population of Southwark and Lambeth.
At Guy’s and St Thomas’, the Transforming Outcomes and Health Economics through Imaging (TOHETI) programme is looking at how imaging services can be used more effectively to improve patient experience and outcome. In an initial meeting with colleagues from Interventional Radiology and Gynaecology to look at the linkup between the two services, we established that there was a lack of awareness, openness and understanding of fibroids in the wider health service and patient population.
Variation in access to information and late diagnosis can mean unnecessary suffering and limit treatment options – when fibroids are left for years and grow too large, a hysterectomy or removal of the womb may become the only viable option. This can have huge additional impact on women’s emotional wellbeing and relationships.
We ran a series of focus groups in Southwark and Lambeth during June 2015, attended by 27 women. Many women told us they felt they lacked a voice in decision making regarding their treatment. The need for more emotional support was also clear, and there was a clear sense of frustration and upset at the impact fibroids had had on these women’s lives.
We recognised a need to increase GP awareness of fibroids and their different treatment options, to facilitate earlier recognition of fibroids and their symptoms and enable more clinical choice. We also wanted to increase patient awareness to empower women’s conversations with their primary and secondary care providers. Through this work, we also aimed to bring together consultants from gynaecology and Interventional radiology, to further improve co-operation between the two services.
From March 2016, 10,000 copies of a new 20-page A5 leaflet on fibroids are being distributed in GP surgeries and pharmacists across Southwark and Lambeth, through Women’s Health services at Guy’s and St Thomas’ and through neighbouring referring Trusts in South London and Kent. The leaflet is also available online through the Southwark, Lambeth and Lewisham GP data information systems and the Trust website.
The materials are also available on fibroids patient group websites, and the Royal College of Nursing website. We were very conscious, particularly following feedback from the focus groups, that this is a private condition people often don’t like talking about, so we needed the leaflet to be something women can pick up and find reassuring.
We worked with patients to produce a design that was simple, clean, but also relatable and real for women of all ages. An eight-minute video was also produced, and includes interviews with women who attended our focus group about their experience seeking treatment for fibroids, and what advice they would pass on to other women.
To coincide with the launch of the video and leaflet, a peer support group for fibroids was held in the Women’s Health Department at Guy’s Hospital, and takes place every three months with a presentation from a healthcare professional or lifestyle expert. The distribution list for this group continues to grow (currently 39 women), and is well attended. We are also encouraging women to set up and maintain their own networks to communicate and stay in touch between sessions.
We have built up strong relationships with patient organisations. These include the Lake Foundation - a UK health charity that advocates for the African and African-Caribbean community, patient-centred charity National Voices and patient focus groups including FEmISA and Fibroids Focus. We continue to support and attend local events and twitter chats. We have also built awareness and engagement across different sectors to maximise impact, uptake and spread. We are working with Gedeon Richter - the pharmaceutical company who manufacture the drug Esmya, and future planned collaborations include developing training for GPs. We continue to speak to GPs through education events, and will be going out again into the community to visit GP Locality meetings and build awareness.
We have helped to facilitate media interest and coverage of patient stories through the Daily Mail and Sunday Mirror as well as other news outlets. The BBC Victoria Derbyshire show interviewed our former Deputy Medical Director, John Scoble, about the project and how it was meeting patients’ needs. This project was awarded the Patient Safety Champion Award, South London Innovation and Diffusion Awards 2016. We have also showcased posters at conferences including the HSJ Patient Safety Congress 2016, the King’s Health Partners Safety Connections Conference 2016 and will be at the International Forum on Safety and Quality in Healthcare, 2017. It was featured as a case study in the People and Communities Board and National Voices publication: ‘Six principles for engaging people and communities’.
The feedback and continued engagement we have with our focus group patients, and new patients met through support groups and community events has demonstrated the clear value and importance of this work. Submission for a qualitative study: ‘Are patients appropriately accessing information on uterine fibroids?’ is underway, and will help us measure the impact of the leaflet and materials in our community, a year after their launch. We also plan to perform an audit of the number of women being referred for treatment for fibroids, the age at which they present, and surgical procedure performed to measure any changes in behaviour.
Patient engagement has been at the heart of this project, also bringing together clinicians and external colleagues. The project provides a strong illustration of the value of patient involvement and co-design in improving clinical services to meet patient need. We plan to take learning from this stream of work and apply it to other TOHETI pathways, and to continue to share our learning across the Trust.