Create Multidisciplinary NHS services for hEDS and associated conditions.

Background

We want the Government to work with NHS England to establish multidisciplinary specialist services and national care pathways for people with Hypermobile Ehlers-Danlos Syndrome (hEDS) and associated conditions, ensuring coordinated care and reducing delays across multiple specialties.

Additional details

Although hEDS is mild for some, others develop multiple related conditions requiring care from Rheumatology, Cardiology, Neurology, Gastroenterology, Immunology, MSK, Pain Clinics, and Physiotherapy. Patients face multiple waiting lists with little coordination, causing delays, repeated investigations, higher NHS costs, and reduced quality of life. National multidisciplinary services and care pathways are needed for joined-up care.

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