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 IC/BPS 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, patient engagement, patient participation in research projects and drug development and how to best train patient organisations/advocates to take part in these projects in an effective and meaningful way.