Study title

While modern biomedicine revolutionised doctors ability to diagnose, treat and cure a wide range of diseases, health services in the western world struggle to meet the needs of an increasing number of people with complex chronic illnesses in need of long- term coordinated care. Patients with chronic conditions which are difficult to explain, diagnose and cure, including so-called medically unexplained physical symptoms (MUPS), are especially challenging. When a clear etymology, precise diagnostic tools and efficient treatments are lacking, the medical encounter becomes difficult for both doctor and patient. This project was designed to gain knowledge about how this user group experience the quality, accessibility and coordination of primary and secondary health care in the Norwegian National Health System. The main questions were: How do chronically ill persons perceive the quality, accessibility and coordination of national health services? Are their experiences systematically associated with gender, age, place of residence, or socioeconomic position? And what needs to be done to improve services offered to patients with complex chronic conditions? Cases chosen for the empirical study were people with Myalgic Encephalomyelitis (ME) and people with coeliac disease (CD). Special attention were given to women with ME. The project involved an international collaboration with a multidisciplinary group of researchers from three countries with similar National health systems: England, Canada and Norway.