Let's say there was a terrible illness for which there was an effective medicine but because it has to be delivered consistently over a long period of time, it often fails. Availability of the medicine isn't the problem, nor is the technology too complex for the average person, but as a public health issue we know that the treatment will often be mismanaged and often worsen the illness.
Should we, in this case, stop telling people about the medicine? Or should we train more people to deliver it? What if we teach the public about it and let demand lead to more supply?
Yes, I'm talking about eating disorder treatment. Specifically, re-nourishing the brain with enough nutrition -- provided by parents at home.
By telling parents about the option of home re-feeding, we offer hope. It is, after all, an option. But it is a terribly difficult option without trained support and few families have that support locally. In fact, it is an approach that will be actively discouraged and undermined by many of the resources around a family.
Is it wrong to tell families about the possible success of home re-feeding when we know that their trusted local doctor will probably not understand it? That their local mental health providers are likely to see it as the very opposite of helpful response? That if emergency aid is required the family will be considered misguided or even abusive?
But looking at it in another way, how can we fail to tell families about it? How will the use of this medicine spread and how will doctors and mental health professionals be informed about evidence-based practice when their own professions are slow to adopt them? With little money to be made on this medicine who will "sell" this idea and make sure it is available?
This is the dilemma I face every day. When my daughter became ill in 2002 I was horrified to realize the treatment she needed was neither available nor widely known. I realized parents out there would want to know about it but were unlikely to stumble on it.
As time goes on I am overjoyed to see the news spread and the option open up at different spots around the world. But at this rate of progress it will be decades before it is routine for families to have this option. Families are waking up EVERY DAY to this diagnosis and don't know about the options. There are children who could today start re-feeding and avoid years of misery and worse, but will not. Who is speaking up for and reaching those families? Whose job is it?
I am grateful to every clinician out there who has chosen to support families toward recovery using the principles of the Maudsley approach -- whether out of the manual or "modified." Their patients are fortunate indeed. My question, and my daily dilemma, is how about the rest?
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