EDS GP Toolkit

Project Summary

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:

• Key points summarise what is currently known about EDS/HSD. In particular, that these are multi-system disorders and not rare, but rarely diagnosed.  

• Guidance on when to suspect hEDS/HSD in patients is provided with the acronym “JustGAPE”, which specifies the involvement of Joints and U/other Soft Tissues, Gut, Allergy/atopy/auto-immune, Postural Symptoms, and Exhaustion. It also discusses key diagnoses which should lead the clinician to consider hEDS/HSD, such as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and fibromyalgia.

• There are links to patient vignettes and stories to help expose healthcare professionals to the diverse presentations of hEDS/HSD patients.

• Key clinical indicators which should raise suspicion of the rarer EDS subtypes and the need for a specialist referral are also specified.

• The emerging major associations of hEDS/HSD are also described. These include autonomic dysfunction in the forms of Orthostatic Intolerance (OI), Postural (Orthostatic) Tachycardia Syndrome (PoTS), vasovagal syncope (fainting), and Mast Cell Activation Syndrome (MCAS).

• Most importantly, comprehensive information and guidance regarding the diagnosis, management, and treatment of hEDS/HSD in primary care is proivided.

• Finally, a wealth of more detailed resources are listed for primary healthcare professionals, patients, carers, educators, and commissioners. These include books, webinars, videos and the latest research papers which provide further detailed information about the conditions, as well as links to charities and social media sites for sources of patient support.

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.