Ehlers-Danlos Syndrome (UK only):
NHS Adult Hypermobility Service
Diagnostic service and management advice for the already diagnosed.
NHS Sheffield EDS Service
Sheffield Children’s Hospital
Diagnosis and management advice for complex cases of EDS in both adults and children.
NHS Great Ormand Street Hypermobility Clinic
Children’s rheumatology service which diagnoses and treats hypermobility syndrome. They also work in conjunction with the hypermobility unit at UCLH.
NHS in-patient hypermobility rehabilitation service, Stanmore
Royal National Orthopaedic Hospital (RNOH) London
Adult rehabilitation service for the musco-skeletal aspects of hypermobility syndromes. Stanmore do not treat other aspects of EDS, eg. gastro issues, or people who have other diseases or are largely housebound or bedridden. They provide a 3 week in-patient rehabilitation and pain management programme. They were closed to new referrals in 2016 but appear to now be open for business again.
NHS Royal National Hospital for Rheumatic Diseases, Bath
Diagnosis and management service for hypermobility syndromes, both outpatient and a small amount of inpatient beds. Doesn’t specify if they accept children.
NHS Hypermobility Clinic, Manchester Royal Infirmary
Diagnosis and management service for hypermobility syndromes. Dr Paulene Ho is the clinical lead for hypermobility and the Consultant who dianosed me, so if you refer ask to see her. Doesn’t specify if they accept children.
Private Hypermobility Unit St John & Elizabeth Hospital
Adult diagnosis and management advice for all hypermobility syndromes, plus physiotherapy for already diagnosed children. Dr Kazkaz is one of the UK’s leading experts on hEDS.
Mast Cell Activation Syndrome (UK only):
Private Dr Seneviratne, The Lindo Wing
Update July 2019: Feedback from my blog followers is that Dr Seneviratne is no longer seeing private patients despite his profile still being available on the Nuffield Health website, nor is he available on the NHS to see MCAS patients. It’s a real blow, as he wrote the chapter on MCAS in Ehlers-Danlos Syndrome for the 2017 nosology and is one of the UK’s most knowledgeable MCAS Consultants.
NHS Dr Bethan Myers
Haematologist, Leicester Royal Infirmary
Is knowledgeable about MCAS, though may give a probable, rather than absolute, diagnosis. I think she sees children as well as adults but you’d have to check.
NHS Dr Sargur
(also practices privately)
Immunologist, Northern General Sheffield
I’d heard good things about this Doctor when it came to seeing and treating MCAS. He has access to the only NHS lab who fully test for MCAS markers and the Dietician on his team is knowledgeable about low histamine diets. My GP wrote a referral for me, although Sheffield is 200 miles from where I live, and he refused to see me as he said the referral was “inappropriate”. So good luck if you manage to see him – let me know how you got on!
NHS Dr Croom
(also practices privately)
Allergist, Queens Medical Centre Nottingham
This Doctor has an excellent reputation for treating MCAS patients. However, I have heard that she is no longer able to take NHS referrals from outside her catchment area so you’d have to check if you want to see her on the NHS. Her private clinic is also very busy and unusually you may have to wait up to 3 months to see her even if you pay.
There is a very useful list of consultants who may diagnose MCAD on this forum.
Information coming shortly………