“ED” will be cornered in Sydney this week with two events: a National Workshop organized by the National Eating Disorders Collaboration, and the Australian and New Zealand Academy of Eating Disorders (ANZAED) ninth annual conference.
As a co-chair of the Consumer and Carer Reference Group on the NEDC steering committee I look forward to meeting families and individuals who are coming along to learn and share their experiences to help others. At the ANZAED conference on August 26th I will have three minutes on stage to ‘tell the world’ about my first ever poster. The title is ‘Evidence from Experience – The Untapped Resource’. Stay tuned for more!
Treatment is sure to be major topic at both conferences.
As a ‘consumer’ (I dislike the use of this word in this context – but that’s another story) who struggled for decades with eating disorders, and who became estranged from parents and sibling along the way, I am passionate about Family-Based Treatment (FBT). My reasons are two-fold: FBT, also known as the Maudsley Approach, is internationally recognized as the best evidence-based treatment available for early intervention of anorexia in children and adolescents; and it involves all members of the family in the recovery process.
However, while FBT has a high success rate, it is not suitable for all families. It is important that these families do not feel ‘a failure’ when FBT does not work for them, and it is equally important that these families are assisted in finding a treatment that does work for them. Notice that I am talking about the entire family. This is because when Anorexia Nervosa develops in a child’s brain, the repercussions affect not only the child but each member of their family. This illness will not ‘just go away’. It needs to be challenged – as with cancer, the sooner the better – and a united, collaborative front is the best way to ensure success.
There is no quick solution to an eating disorder, and understandably parents become confused, frustrated and angry when FBT does not work for them. The voices of these parents must be heard, while remembering and respecting that FBT, for the moment at least, is the best solution for the most families. It reminds me of that old saying: ‘Don’t throw the baby out with the bathwater’.
In preparing for the two national conferences this week, I have invited two mothers to discuss the topic: ‘Family-Based Treatment – suits most but not all’. How do you respond to families whose experience with FBT has not been successful, and want their voice to be heard, sometimes to the point of criticising FBT, asserting that evidence for its application is ‘weak’ and expressing fear that this form of treatment will attract the biggest share of available health care resources?
Laura Collins, founder and executive director of FEAST, shares her wisdom on Family-Based Treatment:
I run into this line of thinking quite a bit – and consider critiques a natural and positive thing: a backlash is a sign that FBT is a great enough influence to be noticed!
I find these critiques come from basic misunderstandings of FBT and real concerns about resource allocation:
The “weak evidence” angle is a (somewhat smug) new catch-phrase that lacks context: compared to what? There isn’t anything stronger, and there isn’t a heck of a lot known at all. One can call almost all data in psychiatry “weak” if one’s goal is to be negative. This nihilistic attitude about FBT almost invariably comes from those who: don’t understand it, or have a vested interest in other approaches with even less data. The weak evidence argument needs to be responded to thus: “You’re right: we need more research. Meanwhile we will have to go with the tools we have that have even weak evidence over those with less, or none – when possible.”
The “it didn’t work for me” argument is understandable. Imagine the despair of a family being told “this is the Gold Standard” and it still not working. This argument is less about logic and data than it is a plea for compassion and understanding, and I think we should give it. My answer in a debate on this is: ”It must be so hard to hear people talk of the success of FBT when it didn’t work for you. I want to hear more about that and perhaps we can help you explore some of the many other options – all families want their loved ones to recover.” If pressed, I add this: “Infections often require antibiotic treatment. No one formulation will work in every situation. While we might start with the medicine most likely in that situation to be adequate we must always have other alternatives at hand for the minority with different profiles. The medicine may fail, but the patient has not.”
The “don’t prescribe this because then other things won’t be available” line is a sad truth in most health systems and family finances. The NHS, for example, seems to think that “evidence-based” is an exclusionary concept and not a way to prioritize and stage interventions. Yet this is a failure of the health system that we need to change, not an excuse for rejecting evidence-based approaches first. Of course there must be alternatives and clinical judgement, but without a way to distinguish and stage by the data we have we become guardians of a status quo that is most likely to harm the greatest number of patients and their families. My answer to this is generally along the lines of “I understand your concern that FBT will be the only option and will leave many families without the resources they need. That has been your experience and you know well the perils of failing to offer alternatives. We agree on this and must work together to make sure our health system does not think of this as a zero-sum equation. In fact, by staging interventions based on the evidence we have we may be able to open up more resources because more families will find appropriate care early and move forward.”
I hear the “don’t stick this down my throat” [response to FBT] from parents who fear they can’t do certain things, feel guilty for having failed to do certain things, and those for whom FBT genuinely was the wrong option. I hear it from clinicians who feel their intentions and long history of hard work are being disregarded or criticized. There is an impression out there that treatment advice (and lack of availability of other options) based on research is too mechanical, too patronizing, too bureaucratic. These are all understandable for new, difficult ideas. But really, those out there offering FBT training and information are not the ones sending the message “you must do this.”
The message has been, as far as I can see, that this is an opportunity – not a mandate. A glimmer of hope, not a rejection of all else. People may feel dictated to but I think that is a defensiveness inherent in being questioned, not some sort of bullying on the part of proponents. I have never heard a FBT clinician or advocate say that there is no other alternative or that FBT is suitable for all – that is coming from those who feel challenged by it and mostly from those with personal reasons to do so. I believe in time the ideas will be less threatening and the resistance will decrease.
There: I’ve gone on too long. It’s just that I engage in this argument constantly and although I find it wearying I also see that the ice is melting and the paradigm shifts inherent to grasping FBT are not without distress.
The points of agreement are that alternatives must be available, and that more research is desperately needed. Neither of these points should mean FBT is de-emphasized as a first-line option, or that fairness requires equal footing for all approaches.
Tomorrow, Jane Cawley shares her view.
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