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

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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40337-022-00648-0.