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 GP Clinical Toolkit for EDS/HSD and related conditions.
GP 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.
The GP EDS toolkit created contains several sections:
The EDS GP toolkit undergoes regular updates of the evidence-base so that it can continue to be a trusted and comprehensive source for healthcare professionals and others alike.
This toolkit was developed and last updated by the Royal College of GPs (RCGP) in 2018, in partnership with Ehlers-Danlos Support UK. Since November 2021, it has been solely owned and updated by Ehlers-Danlos UK.
Development of this toolkit in 2018 was led by Dr Emma Reinhold, with contributions from pharmacist Lisa Jamieson MSc, Prof. Lesley Kavi, Dr Hanadi Kazkaz, Dr Alan Hakim, Nikki Paiba, Dr Gemma Pearce, Dr Philip Bull and Jan Groh. The toolkit was hosted by the RCGP between May 2018 and November 2021.
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.
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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