Ehlers-Danlos Syndrome

In the South Tees area, the CCG engaged with its member practices and patient groups to share a toolkit regarding Ehlers-Danlos Syndrome.

Following attendance at the local authority’s Health Scrutiny Panel where this issues was raised, the CCG met with members of the panel to discuss and take on board feedback they had received from a cohort of patients.  Using the insights and information that had been obtained from these patients, the CCG met with South Tees clinicians to discuss issues and barriers to care. Since then changes that have been made have been positively welcomed by the cohort of patients who have said they have already noticed a difference when interacting with and using services.

The CCG plans to continue the dialogue with these patients so it becomes part of a normal cycle of feedback being used as part of the commissioning and improvement process for this service.