The lack of access to, funding for, and compassion in NHS eating disorder (ED) adult services has recently become a major talking point following Nikki Grahame's passing. And, a 2021 qualitative analysis of ED patients' experiences transitioning from child to adult ED services in the UK provides a glimpse as to why these discussions should become a major policy focus(1).
The present study, a first of its kind, interviewed 22 individuals working in Child and Adolescent Mental Health Services (CAMHS) or adult ED services, 5 patients receiving ED treatment, and 6 caregivers of ED patients in the UK. From these interviews, 3 themes emerged:
communication
managing differences between services
timing of transition
Communication
The need for increased communication between CAMHS and adult service professionals was a recurring topic amongst participants. Specific strategies for facilitating these discussions included service team meetings, as well as liaison workers to ensure communication between all associated individuals. Another recommendation was to allow gradual patient transitions from CAMHS to adult services where staff jointly prepared for the transition.
On the patient side of things, several individuals acknowledged that communication with adult services seemed unhelpful and unavailable at times, unlike their experiences with CAMHS. Recommendations for improving these shortcomings included increasing the use of email, texts, and video calling between patients and adult services.
Finally, parents/carers cited that their roles in adult services were ambiguous and that more guidance on how they could help a loved one using adult services would be appreciated. The uncertainty of carers' roles in adult services could be clarified by providing them with access to carers with "lived experience" for advice.
Managing differences between services
Lack of communication between patient and service can also leave patients unprepared for their new role as "adult patient". Being an adult patient often requires an increased responsibility for one's health, which can add additional stress. While some patients will relish in this newfound independence as they transition to adult services, others might find the burden to be too much at 18 years of age. This is why differences between services and a patient's needs should be discussed before the start of service transition.
Moreover, participants in this study perceived the criteria for admittance into adult ED services, specifically weight and age thresholds, to be too rigid. While CAMHS patients are able to transition into adult services without meeting these criteria, the transition, nonetheless, is not guaranteed. The worry that they're not "ill enough" for adult services adds additional stress for patients, while giving them the perception that their illness "isn't serious". Strict adult service thresholds also put individuals at risk for relapse and can leave them feeling unsupported. Similarly, patients using adult services expressed a need for longer treatment options. This is because the quick nature of ED treatment discharge perpetuates stigmas about EDs and increases risks for relapse.
Timing of transition
Finally, the unique experiences of patients should be acknowledged during service transitions. This is because some patients will be ready for adult services at 18, while others will not. Differing life events, such as university and work commitments, as well as previous illness experiences, makes each patient's recovery path unique. Therefore, treatment flexibility is vital for a patient's efficacy and agency during service transition.
In sum, increased patient flexibility and communication between services, patients, and carers were the key findings of this study. Nonetheless, barriers, such as funding, make implementing these suggestions challenging. Moreover, diverse patients and services need to be included in these studies to ensure that all perspectives are heard in these discussions.
1) Wales, J., et al. (2021). Experience of transition between a child and adolescent service and adult service for the treatment of eating disorders. Mental Health Review Journal.