Creating a care pathway for patients with longstanding, complex eating disorders

Abstract

Plain English summary It is known that as many as 20% of people with eating disorders do not recover, and go on to live with their eating disorder for a number of years. However, there is relatively little research or guidance for professionals about how to support this group of people. Therefore, this project aimed to design a pathway for patients with longstanding eating disorders by combining the research evidence, staff’s expert opinion and patient’s views. The results highlighted that the majority of participants in this sample expressed a dislike for the term ‘SEED’ (severe and enduring eating disorder) and preferred ‘longstanding eating disorder’ or having no label. The results were used to generate a set of recommendations about how services can best support this group of patients which covered how to structure the service, individualise care, manage patient’s relationship to the service, and build a life after eating disorder services. Key ideas included the importance of remaining hopeful about future recovery, introducing peer support, and supporting patients to improve their quality of life.

Keywords

• Longstanding eating disorder
• Severe and enduring eating disorder (SEED)
• Service improvement
• Treatment
• Care pathway