Through all of our previous work, it became clear that further education and broader understandings were required to support those childbearing with hEDS/HSD more effectively. As such, we began to connect with those who had engaged in our projects thus far online to ask them:
“Which educational tools would be most useful in helping maternity staff support childbearing women with hEDS/HSD?”
Over 1000 people responded to this rapid online poll, where results were spread over a number of answer options. Yet many people indicated that an online learning module, a toolkit and a variety of informative and visual resources would be useful in this context. These insights were used to inform a funding application which won the team a £20k pump priming grant awarded from Coventry University.
This grant enabled the team to do the following:
Our partners for this work included: Hypermobility Syndromes Association, Ehlers Danlos Society, Make Birth Better and Ehlers-Danlos Support UK. We also continue to work with the Royal College of Obstetricians and Gynecologists (RCOG) and the Royal College of Midwives (RCM)
We used a co-creation method originating from the co-creating welfare (CCW) project adapted for online use via two webinars to develop the final educational tools. Visit the CCW website at http://www.ccw-project.eu/.
The final tools comprised:
The co-creators involved in this project included people with a variety of experiences and expertise on the topic including some with a diagnosis of hEDS/HSD, some who have experienced more than one successful pregnancy (both physiological and home birth), some healthcare professionals and some academics: Lisa Eagles – Midwife, Milton Keynes University Hospital NHS Foundation Trust, Hannah Ensor, Chair –The Hypermobility Syndromes Association (HMSA), Sarah Hamilton – Communities Manager EDS UK and mother with a diagnosis of hEDS, The Ehlers-Danlos Support UK, Dr Emma Reinhold – RCGP Clinical Advisor on the Ehlers-Danlos syndromes, Royal College of General Practitioners, Dr Carol Rivas – Associate Professor, UCL Department of Social Science, Bethan Simpson, Claire Whitehouse – Senior nurse for nursing, midwifery and AHP research, The James Paget University Hospitals NHS Foundation Trust, Dr Joanne Demmler – Health Data Analyst, Swansea University, Claire Kennard, Lead Midwife – Community, Guy’s and St Thomas’ NHS Foundation Trust, Diarmuid Denneny – Professional Lead Physiotherapist, Pain Management Centre, University College London Hospitals NHS Foundation Trust, Kizzy Lynch – Lead Midwife for Education, Senior Lecturer and Programme Leader, University of Lincoln, Sabeeha Malek – Researcher, University of Warwick, Laura Stoneman – Paediatric nurse and mother with a diagnosis of hEDS, Dr Benjamin Viaris de Lesegno – Consultant in the NHS, St George’s University Hospitals NHS Trust.
These tools were launched officially on International day of the midwife (May 5th) during the year of the nurse and the midwife (2020). Co-incidentally, May is also Ehlers Danlos Syndromes and Hypermobility Spectrum Disorders awareness month. You can view the launch of these tools along with our other presentations here at the GOLD Online Education Midwifery Conference 2019/2020.
Citation: Pezaro, S., Pearce, G., & Magee, P. (2020). New Educational Tools to Support Childbearing With hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders. GOLD Online Midwifery Conference. May 5th.https://www.goldlearning.com/ce-library/all-lectures/new-educational-tools-detail
Gemma is the lead for this world-leading hEDS together research theme, she is involved in all of the featured research projects and has hEDS/HSD herself.
Sally has a passion for driving and leading excellence in maternity services. She also relishes the challenge of turning visions into impactful practice.
If not sailing along the Thames, Paul can be found looking upwards at great architecture or gazing out of the studio window. With coffee.
Ben is a graphic designer based in Manchester who runs his own independent design studio specialising in branding and visual identity. He enjoys football and birdwatching in his spare time.
Sabeeha is a PhD student and researcher at the University of Warwick, and also interned at hEDStogether. Her research focuses on the role of cell adhesion and cell biomechanics in EDS.
Emma spearheaded the RCGP #EDSToolkit project. She is passionate about improving all aspects of the patient experience in hEDS/HSD through research and policy work.
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