Diagnostic Services

Ehlers-Danlos Syndrome (UK only):

NHS Adult Hypermobility Service
UCLH, London
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
London
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, so if you refer ask to see her.  Doesn’t specify if they accept children.  The hypermobility clinic was so swamped with referrals they had to close to new cases, but may now be open again – your GP would have to contact them to find out.

Private Hypermobility Unit St John & Elizabeth Hospital
London
Adult diagnosis and management advice for all hypermobility syndromes, plus physiotherapy for already diagnosed children.

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Mast Cell Activation Syndrome (UK only):

Private Dr Seneviratne, The Lindo Wing
St Mary’s Hospital, London or his private rooms in Oxford
Testing, diagnosis and treatment for mast cell disease, in particular in relation to Ehlers-Danlos Syndrome.  The best consultant to see for MCAD in the UK by a mile.  However he is horrendously expensive.  I think he sees both adults and children but you’d have to check with his secretary (who from my experience was bloody useless, keep at her!).

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.

There is a very useful list of consultants who may diagnose MCAD on this forum.  I’ve not heard great things about Clive Grattan, so personally wouldn’t recommend him, and have no knowledge of any of the other consultants listed here other than Dr Seneviratne and Dr Myers.

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M.E.

Information coming shortly………