A Quality of Life survey undertaken in 2008 by Behçet’s UK (then Behçet’s Syndrome Society) identified that on average it was taking 12 years for Behçet’s patients to receive a diagnosis.
Behçet’s UK began an application to the National Specialised Commissioning Group for Centres of Excellence to be established to treat patients with Behçet’s. The bid was successful and the three centres were established in April 2012, in London, Birmingham and Liverpool.
The Behçet’s Centres of Excellence offer care in the form of multi-disciplinary clinics and help patients to access high cost drugs.
The local NHS Trust provides and manages all the medical needs of patients attending one of the Centres whilst Behçet’s Patients Support provide the non-medical aspects of supporting patients living with Behçet’s.
This service funds a Behçet’s Support Coordinator at each Centre of Excellence
The aim of the Centres of Excellence is to ensure that patients with Behçet’s can access timely diagnosis and receive optimal treatment across the country. They provide a “one stop” service, aiming to provide the best care from diagnosis for this rare, chronic disease.
Each hospital has specialists with relevant expertise and provides multidisciplinary teams that work together within each hospital and with the other Centres to further improve the care of Behçet’s patients.
A key member of the multidisciplinary team at each Centre is the Behçet’s Support Coordinator,
The Behçet’s Support Coordinators are highly-motivated with experience in providing non-medical support.
To patients registered at a Centre, they provide; advocacy ,consultancy and a coordination service for benefits advice and signposting for other assistance organisations.
They are passionate about holistic care and are prepared to go the extra mile to meet the non-medical needs of patients registered at a Centre.
Our team of Directors and Operational Staff are committed to "helping people with Behçet’s live well " in partnership with the NHS and Behçet’s UK.