One of the challenges of swimming against the stream -- as when, for example, one insists that parents don’t cause eating disorders when many providers learn and believe otherwise -- is that you become a bit of a pariah. At a minimum, people will prefer to talk to those of their colleagues who think as they do.
So building a web of safety around our patients once they leave the immediacy of Kartini Clinic has been a challenge. What are the needs of our young patients once they leave us? How do we keep them in remission over the long haul?
Continued weight maintenance is first among the needs, at once the most straightforward and yet the most problematic and easily sabotaged. Ideally, the professionals who see our patients after discharge would simply support and encourage their parents in adhering to the meal plan that has worked so well for them. But approaches and beliefs about food and weight are many, and the availability of eating disorder professionals who have experience with children and young people varies greatly across geographical areas.
Continued anxiety reduction techniques and support is often another need, including the use of medication where appropriate. Addressing anxiety: general anxiety, social anxiety and eating disorder anxiety, is very important for some -- but not all -- children who are in recovery from their eating disorder.
Parents, of course, are the real advocates for and experts in their own children. But beware those who insist on extrapolating from their own experience to that of everyone else, insisting that “it has to be the same.” Some parents, furthermore, will need and want more back-up from their home team, while some will firmly be in the camp of “we’ll take from here, thanks.”
Back to our somewhat lonely position at Kartini Clinic where, since 1998, we have insisted that anorexia nervosa (and all eating disorders) are brain disorders: complex neurobiological conditions with symptoms that feature severe food intake disregulation, and which are neither the parents’ fault nor the child’s, not lifestyle choices nor issues of control. For years, worried about conflicting messages, we simply sent our patients back to their pediatricians once we felt they were in remission, trusting the parents to keep them steady without any outside help. That worked some of the time, but definitely not always. At that time, we would have liked to have had a group of therapists, dietitians and pediatricians who shared our convictions, but there were very few until quite recently; now it is no longer heretical to move away from parent blaming, to advocate for complete, prompt weight restoration and to think about the neurobiological underpinnings of these illnesses.
Ideally, all patients would experience a high level of continuity of care, no matter where they are from. At Kartini Clinic, we have traditionally offered care by the same providers from our inpatient (hospital) service to our partial hospital (day treatment) unit and finally to our outpatient service. But the pressure to return to “normal” to “graduate” from specialist care is always great, despite recommendations by some for at least 18 months of follow-up. For these reasons and the historical ones discussed above, we have fallen down on the job of building relationships with outpatient providers, particularly ones overseas or in other states, and would like to change this now.
We all need a broad safety net for children with eating disorders, a safety net that reflects the changes in the science and evidence. In short, we need to talk among ourselves and weave a wider web.
Parents, providers and those who have been in remission from these conditions: what would you suggest? What are the needs of families whose children are now in the outpatient world? How wide should the net we cast be? What should it consist of? Who should be involved, and how do we get there? Can we focus on training other providers?
I welcome your suggestions.