British by birth and have lived in several European countries and West Africa, now resident in the Netherlands for many years. By profession a writer, editor and translator, entered the patient world in 1993 following diagnosis of PBS/IC and Sjogren’s syndrome after over 30 years of non-diagnosis. Founded the IC patient movement in the Netherlands. Currently chairman of the International Painful Bladder Foundation and an international Patient Advocate. Special interests include standardisation of terminology and definitions, guidelines, patient perspective.