EDS RCGP 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 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:

• 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.

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:

• Dr Hanadi Kazkaz,
• Dr Alan Hakim,
• Nikki Praiba,
• Dr Gemma Pearce,
• Dr Philip Bull,
• Jan Groh

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.