Healthwatch reports on experiences of people with hEDS and HSD
- 8 August, 2019
- Ehlers-Danlos in the news
Healthwatch Calderdale has published a report of the experiences of people with hypermobility-related disorders across the Yorkshire and Humber region. Two hundred and fifty people took part in the survey-based study. The report’s findings support our own evidence based on our members’ experiences – that people with hypermobility-related problems are facing huge difficulties in getting a diagnosis and appropriate advice to manage their conditions due to a widespread lack of understanding in the medical community. The average age of the onset of symptoms in the Yorkshire and Humber group was 12, with most participants having to wait until adulthood to get an explanation for their problems. The impact of this long wait on people’s mental health is also discussed. The Healthwatch report highlights some examples of good care too, with the critical role of the GP coming out strongly. The report calls for widespread dissemination of the Royal College of GPs’ and Ehlers-Danlos Support UK toolkit for GPs amongst other recommendations. Further details about the project are here.