There was an increasing recognition that the appropriate resources available for GPs and healthcare professionals to diagnose and support EDS/HSD patients in a primary care setting were lacking. The need for a readily accessible source of information and guidance was needed. As such, Dr Emma Reinhold spearheaded the development of an RCGP Clinical Toolkit for EDS/HSD and related conditions.
RCGP Clinical Toolkits are developed specifically for healthcare professionals in Primary Care. They are used to assist in the delivery of safe and effective care for patients in a primary care setting, in particular, highlighting clinical areas where knowledge is patchy. This is something healthcare professionals are able to use with assurance that the information has come from a trusted source, as each Toolkit is peer reviewed within the Royal College. This enables them to deliver care for their patients with confidence as they can cite the guidance on the website.
The RCGP EDS toolkit created contains several sections:
Though launched in 2018, the RCGP EDS toolkit continues to provide support and raise awareness of EDS/HSD, both for the primary care setting and beyond, and with regular updates of the evidence-base.
This toolkit was developed in partnership between the RCGP Clinical Innovation and Research Centre and The Ehlers Danlos Support UK, led by Dr Emma Reinhold (RCGP Clinical Champion and EDS UK Medical Advisory Panel) and her core team; Lisa Jamieson (Consultant Pharmacist with an MSc in Nutritional Medicine), Professor Lesley Kavi (GP and chair of POTS UK) and Kay Julier (Managing Director, EDS UK), with contributions from:
We have recently carried out a review of the Toolkit two years on and hope to update and add to the resources found there so that it can continue to be a trusted and comprehensive source for healthcare professionals and others alike.
General Practitioner
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.
hEDStogether lead
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.
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