Breathlessness causes emotional and physical distress and social isolation for both patients and their families. Refractory breathlessness, i.e. that which persists even when measures to optimise the underlying condition have been implemented, is one of the most distressing symptoms experienced by patients with advanced life-limiting illnesses. This two-part series describes the experience of refractory breathlessness in patients with advanced disease living in the community, and provides guidance for their care. This, the first part in the series, outlines the experience of breathlessness and how community nurses can accurately assess patients. The second part of this series (available in the next issue of Journal of Community Nursing) will outline management techniques.