SearchNew EDS and HSD primary care study in Northumberland
- 24 November, 2022
- Ehlers-Danlos in the news
A GP in Northumberland is leading research in the area looking at how many people have an Ehlers-Danlos syndrome (EDS) or a hypermobility spectrum disorder (HSD) and how this impacts their use of the healthcare system.
Lead researcher Dr Ben Frankel, who has a personal interest in EDS, is leading a team looking at how many people on Northumberland GP databases have EDS or HSD. The team will then link this information to hospital data to look at patterns of inpatient stays and outpatient and A&E attendance.
We know that people with these conditions present to many different health service departments including: A&E, primary care, orthopaedics, gastroenterology, rheumatology, psychiatry, falls/syncope, immunology, neurology, physiotherapy, urology and dietetics. The clinical experience and expertise of EDS and HSD is often very varied between departments and hospitals.
At present, rheumatology departments are being instructed away from accepting referrals for non-inflammatory joint problems like EDS and HSD. As a result, the patient experience is often poor with little coordination of service delivery, experience and expertise between the many different departments.
This study aims to prove that this way of looking at information about EDS and HSD patients provides meaningful results for the Northumberland population. The researchers then plan to expand it to other areas of the North East and North Cumbria region.
Dr Frankel said ‘I am very pleased to have finally started to work with an enthusiastic team to research ways to improve the care for this group of patients. EDS and HSD are not benign conditions, they can cause many difficult interlinked problems and so need a sophisticated and experienced team to coordinate their care. We hope this is a step in finding a way to make that happen.’
The results of this important study have the potential to inform commissioning choices for EDS and HSD patients and improve the coordination of their care. A UK-wide solution is urgently needed and EDS UK is working to achieve that.