NEW SERVICE FOR COMPLEX EDS CASES

The medical advisors are very supportive of the new service. We have to stress that anyone with a diagnosis already should not approach their GP's to be referred to this service. The service is for those people who have a complex symptomology making diagnosis difficult.
 
The GP's will be unable to refer to these services anyway, referrals will only be accepted from Consultants.
 
The medical advisors feel that in time the HMS patients may well benefit from this service as new information is discovered and disseminated.

The Ehlers Danlos Syndrome (EDS) Specialist clinic is a new service funded by the National commissioning Group for patients with suspected with suspected complex EDS.  This National service is run through two clinics - the London EDS Clinic (Clinical Lead Prof. Mike Pope) and the Sheffield EDS Clinic (Clinical Lead Dr Glenda Sobey).

Referrals are accepted from Consultants in Secondary Care/Tertiary care for Patients in whom the diagnosis of EDS is suspected but has not been confirmed.

The diagnosis and management of patients with EDS can be challenging.  The role of the Specialist clinic is to assist patients and their families as well as the medical teams and clinical support staff including physiotherapy and occupational therapy.  Diagnostic laboratory services supporting the clinic include electron microscopy, molecular genetic testing and collagen analysis.

In Sheffield the service (for both adults and children) is situated within the Department of Clinical Genetics at Sheffield Children’s Hospital.

Enquiries to the Sheffield Clinic (adults and children) can be made by contacting Jo Lemmon (EDS Co-ordinator) on 0114 271 7764 or email EDS@sch.nhs.uk.

In London the service is situated within the Department of Clinical Genetics at Northwick Park Hospital, North West London Hospitals NHS Trust.

Enquiries to the London clinic can be made by contacting Julie Leary (EDS Co-ordinator) on 0208 869 3166 or email Nlh-tr.EDSondonOffice@nhs.net