Monday, March 17, 2014

Learning to play the violin

Although music wasn't my first love, it won't be my last, and I could live without it, I do appreciate it. I am also appreciative of the role it can play in healing the mind. I really am. I believe that music therapy can work wonders. However I don't know anyone who would offer music therapy as the ONLY treatment for anything, let alone a life threatening illness.

It is the same with talking therapies. They can be very useful. Exercises and re-thinking can literally change thoughts and even the brain, but they surely can't be even expected to be the front, the only line, of treatment for something as deadly as an eating disorder. And yet this appears to be what happens to so many.

I attended a workshop on a "second wave" therapy for eating disorders at EDIC. I won't say exactly which one, because I don't want to single out either the therapy or the speaker and because, for the purpose of this rant, it doesn't really matter. In fact the speaker didn't really explain the history of her treatment or the difference between it and any of the other ideas based on mindfulness and kindness that are being talked of by so many at the moment.  The audience, most of them steeped in training in psychology but without a medical qualification or any expectation of power or influence in the physical care of the body of their clients, were asked to practice peaceful understanding of their clients' struggles, and to empathise with them.

All well and good, but if that's ALL that patients are getting, and often it is, then it is really just fiddling while Rome burns. If we put enough resources into this kind of training without adding full medical care with a robust understanding of brain health then we'll very soon have whole competent orchestras who can play while the boats go down.


Anonymous said...

Was any evidence offered at the conference to prove there is a better method of treating anorexia nervosa in teenagers than FBT; in other words, parents simply take control of the kid's eating behavior, restore her to a healthy weight, then return control of eating back to the teen at a rate determined by the family? I've gone to many conferences; nobody has ever offered proof of anything better.
Also, did anyone suggest, after hearing the talk by the father whose daughter died, that parents should take control of refeeding and restoration of normal patterns of eating, rather than rely on the so-called experts?

marcella said...

In short, in the one day I was there (it was a four day conference so I missed a lot) I didn't hear one comment about the evidence for any treatment. A friend did overhear criticism of the concentration on neurobiology as taking away resources for trials on behavioural therapies such as FBT but that was all.

In long, Anonymous you KNOW that FBT is much much more than parents simply taking control of the kid's eating behaviour, restoring her (quite a few patients are hims you know) to a healthy weight and then returning control of eating back at a rate determined by the family. FBT is a manualised behavioural treatment which very much relies on a therapist. All the evidence for it (and there isn't enough for it to be called a class A treatment by the National Institute for Clinical Excellence) is based on the manualised version which is so much more than just the parents re-feeding. The vast majority of the evidence is for the use of the treatment in patients under 18.
The contrast between the story of the father whose daughter died, and the story we heard later in the day of the mother whose daughter, of the same age and away at a University in the same area of the country, was searing. To suggest to him, or anywhere near him, that he could and should have done something different would have been cruel in the extreme. He followed all the protocols and advice and systems available to him. Yes, they are TOTALLY inadequate when faced with an illness for which anosognosia and alexithymia are core features and our system needs to change. Patients should NOT be expected to have to want to engage, or even be able to engage, in treatment just because they are over 18, and that is where the system failed her, not in the fact that it tried to offer her care in her own right, unhindered (and yes, unhelped) by the resources of her parents. That is what our system offers - and, outside the case of extreme mental illness, that is all to the good. A 16 year old (and in some cases a younger child) doesn't have to rely on the good fortune of having a caring and financially solvent parent to gain access to health care - he or she is entitled to it by right. All that is wrong with that is the lack of knowledge about the illness that is an eating disorder.
The happy story of family restoration to health was not one of FBT - the patient was also over 18 and there is far too little evidence to allow the provision of FBT within an evidence based system for an adult. It WAS family based, and yes, it was occasionally hampered by "experts" but it was also facilitated by a true expert, the unsung heroine of the story (presumably because she doesn't want to be sung about), the daughter's university tutor who worked within protocols but cleverly sought to engage the girls' parents and to facilitate a time out of university in order that she be re-fed. They were lucky - they had this tutor, they had Around the Dinner Table, they were financially solvent, their daughter didn't have any comorbid disorders, they had neighbours who didn't call the police when their daughter's illness raged and called abuse. It was still phenomenally hard on all of them.
So, to get short again, no, I heard no evidence that anyone has a magic wand that really works, not even the FBT folks. More resources are needed for all kinds of research and while I have SOME sympathy with the behaviourists who are angry that the concentration on the brain means that rationed resources aren't going to their pet projects, as I'm going to say in my next post, I think genetic research, and the possibility for it attracting the interests and money of the drugs companies, is the way to go at the moment. That's why I spent the conference with blue hair, trying to talk up Charlotte's Helix

Anonymous said...

Unfortunately, many parents are led to believe that eating disorder professionals posses well-tested, effective methods for treating anorexia nervosa in teenagers. This is not true, however. For example, in the U.K. readers can study the outcomes in the TOUCAN trial conducted by Gowers and others in 2007. Using various treatment methods common in the U.K., the outcomes were not particularly good. Therefore, given the present state of affairs, it is not unreasonable for parents to be skeptical of the eating disorders profession and to take maters into their own hands when their teen develops AN.
While it is true that FBT as manualized by Lock and LeGrange involves a treatment professional, there is nothing to stop parents from reading the manual and deciding in their family's case whether a professional is needed, or not. Many parents decide not to use a professional and achieve excellent results and complete recovery for their teens.
Most eating disorder conferences do not include the presentation of scientifically reliable evidence. Instead, they tend to provide opportunities for professionals to give personal opinion and speculation that is not backed by evidence from clinical trials or other scientifically reliable research methods. This is one reason the profession is stagnating and why many parents choose to ignore professionals at this time. More power to you if you can change the "system" but it will probably be a long time before that happens. Meanwhile, parents can be pretty effective using their common sense and, as I say, are achieving great things and compete recovery for their kids.

marcella said...

To all those parents who have, or will in the future, gone it totally alone and saved your children I applaud you. You don't need conferences, you don't need less than robust therapies and you certainly don't need my blog.

I am still certain that in the future the genetic research being done through the AN25K project will be useful to you, if only to help those around you understand the illness you have so bravely fought and be prepared should it rear its head in subsequent generations in your family as, as a highly heritable illness, it is statistically likely to do.

marcella said...

It will also help the rest of us, whether we be sufferers or parents who are not such heroes or so lucky.

Anonymous said...

Research into the genetic basis of anorexia nervosa is fine, but it won't do anything for people who are suffering today, tomorrow, next week, next month, next year, or probably next decade, if ever. Advances in genetics come very slowly. So far, there has been no advance in genetics that has led directly to improved treatment of any behavioral disorder; the brain is so complex, and the state of genetic science so primitive, that we can't rely on the genetic research to save people who suffer from AN now or in the foreseeable future.
In my own family, even though my daughter had anorexia nervosa, it isn't true that it is "statistically likely" that AN will reappear in subsequent generations any time soon. The overall risk for an individual in the general population is about 0.5%. In families with AN, the risk is thought to be about 10 times greater -- so about 5%. This means a 95% probability of AN not appearing again in any given individual in the family any time soon. I think the key will be for future parents to be alert to early signs of restrictive eating behaviors and to intervene immediately, insisting that eating patterns return to normal, without compromise.
Marcella, you and I agree that currently--available treatments for AN are not very good. Almost everyone involved in eating disorder treatment and research agrees. I guess the disagreement is what to do about it. In my opinion, as matters now stand, I find it hard to recommend to parents that they engage with the eating disorders profession as it now exists. I think it is dangerous to suggest to parents that they should rely on professionals, because doing so will lull some parents into thinking the professionals are able to take care of the illness and that parents are not needed. I think it is better to prompt parents to be more proactive.

marcella said...

I bow to your greater knowledge of how to explain the statistics. I am not a scientist but agree both that the brain is very complex and that the genetic influences and variables in eating disorders are very complex.

Where we part company I suspect is in our definitions of eating disorders, and of "proactive parenting" in eating disorders.

I view eating disorders as life-threatening, treatable brain disorders, not just as the "behavioural" disorders of naughty adolescents that could be sorted out fairly simply if only they had half-adequate parents.

SOME families can achieve nutritional rehabilitation without professional help. SOME families find that this nutritional rehabilitation alone to be sufficient to restore full and lasting physical and mental health. MANY, mine included, don't find the process as easy, and find that eating difficulties do not come alone but come alongside, or bring in their wake, many other mental health problems. As you said, the brain is so complex, this isn't really surprising.

Proactive parenting MAY involve simply retreating into the home to get the job of re-feeding done. It may also involve banging on the doors of as many professionals as one can find to get them to take the disorder for what it is.