Background: Recovery rates for people with eating disorders are low; fewer than half recover and approximately 20% develop a longstanding eating disorder. Patients with longstanding eating disorders are often referred to as "SEED" (severe and enduing eating disorders) although this remains controversial and is not acknowledged in the British treatment guidance. This project aimed to generate recommendations for a longstanding eating disorder care pathway by identifying what proportion of patients have longstanding eating disorders and how to best identify and support them.
Methods: Initially, a literature review was completed, followed by interviews with service-users who consider themselves to have longstanding eating disorders, and focus groups with staff members. The results were combined to create a definition of a longstanding eating disorder which was used to establish how many service-users could benefit from the pathway. The qualitative data was used to produce recommendations for a tailored pathway for those with longstanding eating disorders.
Results: The results highlighted that, although "SEED" is often used, participants preferred to be referred to as "longstanding" or having no label. Qualitative analysis identified four themes in relation to supporting this population group which described how to structure the service and individualise care, as well as patients' relationship to the service, and how to build a life after eating disorder services.
Conclusions: Recommendations included promoting a hopeful message, focusing on quality of life and introducing peer support. Crucially, accessing the pathway should not result in being labelled "SEED", nor should it prevent access to recovery focused interventions including weight restoration. The full list of recommendations are included as well as the implications of the project and limitations.
Keywords: Care pathway; Longstanding eating disorder; Service improvement; Severe and enduring eating disorder (SEED); Treatment.
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.
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