Parents won't or parents can't?

Here's a sad truth: not all parents WANT to be in charge of re-feeding or monitoring eating disorder behavior at home. For some families it is a relief to be told that the solution is to send them away to fix their problems and they look forward to the child coming home well and grateful.

At least that's what I hear from a number of clinicians who have encountered this phenomenon.

I always wonder whether parents really understand their options. If they knew how long and difficult recovery is, that a few weeks or months is only the start of the process, and that the hard work will be theirs at home later anyway, they might make different choices. I think if parents were told on no uncertain terms just how hard this is going to be NO MATTER WHAT THEY CHOOSE, and just what will be necessary to best address it parents would frame the question differently.

If parents had the opportunity to get back-up and immediate hospitalization at will during the re-feeding process I think far more would be able and willing to take the responsibility. If parents had truly supportive and skilled clinicians who believed in full weight restoration and cessation of eating disorder behaviors as a restorative step to allow recovery, and truly believed in the power of parents to take this part on, I don't think I'd be hearing so much of this annoyance at parents who "refuse" or "are in denial" or "don't want to" do the work.

If this was the way it was framed: "save this child's life" I really don't know that many parents would say "no, I don't want to try, you do it." Families choose between two terrifying prospects: being on their own at home with angry, frightened, frighteningly sick kids, or sending them to care that they are led to believe will solve the issues causing this problem. That's not abdicating responsibility or denial or the easy way out. That's raw, cruel fear and love. That's mothers and fathers faced with the Judgment of Solomon, not a lack of caring.


  1. What is this "choose" word? ;-)

    I actually agree with most of this, but coming from another culture I see it a bit differently. We WERE told "save this child's life" in almost as many words. We definitely believed that if we didn't do "the right thing" then she would die and it would all be our fault. There was a big difference between the parents in what we thought she would die of, which didn't help at all, but we were united in our terror if not at all in what it made us do. The problem came when we hadn't a clue what "the right thing" was, and there FBT straight from the manual doesn't give much of a clue.

  2. As for parents who DO have the choice and decide to send their chidren away, often at enormous cost finacially as well as emotionally - well of course you're right. How dare providers who are busy advertising how wonderful the facilities are, publicising often highly inflated "success rates", persuading their clients that their home lives are toxic when all that is really happening is that their families are finding it hard to cope with a terrible illness then criticise the very people who are paying their wages. All parents who do this are usually doing is to, to quote a well known figure in the ED world "FOLLOW YOUR TREATMENT TEAMS ADVICE"

  3. I think this is why Janet Treasure's approach is promising. It helps parents to better understand their kids, and to adopt an approach that is less likely to result in parent-child conflict.

    I commented a lot on your previous post, so I won't repeat myself here.

  4. Marcella -- can I just say that my experience with Maudsley resonantes with yours and it is always deeply interesting to hear a parents side of it.

    My parents and I were enrolled in a pilot study for Maudsley. . . As I have mentioned before, the medical director who was in charge of our therapy (who is also a "big" ED researcher) went right by the book. He also seemed to have little time for us (my parents were quite frustrated that as opposed to introducing himself the first night, he lectured them for being 15 minutes late to an appointment and told them he was extremely busy. They had only been stuck in traffic. . .)

    In addition, he went right by the book in terms of Maudsley. He was working directly with Lock and LeGrange (this was a multi-site study) and I think he resented that to head the study at this site, he was required to see at least ONE family for therapy.

    In the first session he terrified my parents who were vulnerable and looking for guidance. He told them the illness was chronic, the involuntary admitting BMI in Ontario was 10, etc. . . But there was little offered in the way of constructive advice as to WHAT TO DO.

    If you notice, the Maudsley method strictly states that each family will do what "works for them." My parents were given no advice, even when they asked for it. They were also told that I didn't need more intensive treatments, etc -- despite the fact I was losing weight during the study.

    This escalated horribly. My parents were terrified and wanted to save my life -- by any means possible. The funny thing is that my "LIFE" wasn't in danger -- I had a BMI of around 17.5 and I was certainly not in any medical danger.

    In addition, my parents both struggle with alcoholism. This was not something that was known to the medical professionals treating me because our family told NO ONE> Similarly, it was not something I was going to tell our "therapist."

    Alcohol + fear + desperation = Hell for all. I was hit, dragged out of bed, yelled at and had food thrown at me and orange juice poored over my head. I was slapped in the face and told I was a bitch, etc.

    I don't blame my parents for this -- they felt horribly for what they did -- BUT in their minds, they were makign me better so the ends justified the means.

    I was afraid to tell our "therapist" this because I have a younger sister at home and did not really want Child Services involved. I didn't even tell my individual therapist who I was seeing at the time.

    I went into traditional treatment. I learned a lot. I relapsed, and I am now in recovery and have gained 23lbs on my own.

    My parents have taken a more supportive role in terms of leaving my eating and behaviours to myself and my team, but supporting me in my struggle when I need it. It took us a VERY long time to heal the rift between us, but we did.

    I know my experience is not typical, but I don't think I am the ONLY one who has experienced this. Especially when I read about parents on the ATDT forum attempting to spoon-feed their children, raging back to their children, etc.

    I think there is a danger to lighting a FIRE of fear under a parent and then leaving them to their own devices. I think there is a danger in telling them that THEY must be the ones to save their child and then having them face the horrible task of dealing with rages, etc.

    My parents told me that they did not feel empowered. They are resentful now. They feel they were manipulated and made to feel guilty/helpless.

    Maudsley is a good IDEA. I has promise. But it needs work.


  5. As a parent of a college age daughter we encountered the dividing concept that her illness was about control and we couldn't utilize fbt,maudsley because our daughter was a young adult . This believe was reinforced by the first treatment team and made it near impossible at the time for our daughter who was too ill to comply and bought the believe that we couldn't help refeeding her. We both sadly but most necessary placed our daughter in a residential treatment program that while acknowledging she had a brain based disorder, did not support family based treatment. Still too little understanding about fbt and Janettreasures empowering book. Still they did refeed her and tried to get a working medication regime followed by dbt mindfulness skills. She has been home now after 3 months of residential followed by 2 month of php. She has be home since early November. I was able to get her home therapist on board with fbt and she read Janet treasures book. She was very supportive after reading dr treasures book. I strongly believe that if we had the right support from the onset of our search for professional help, we could have been successful without residential care. But that is the past for us. I believe some big changes must happen and I don't think we will see them among these residential and php programs. It seems to conflict with their whole structure and would easily cut into their profits. I know on the therapist level, this is not what motivates this believe but it's part of the bigger picture.

  6. I can only speak from my own experience.

    To make an informed decision, you must be given all the information very clearly and with options laid out.

    That didn't happen for me and I'm willing to bet it doesn't happen for many families.

    And, when I tried to accompany my daughter out of state to inpatient, I was told I wasn't to come. VERY clearly.

    I wanted more of a role. I wanted more education. I didn't get it.

    You can't make good choices under these circumstances.

  7. brilliant points. Also it must be so hard, trying to help many people with eating disorders who either consciously refuse help, or subsconsciously sabatoge their caretakers. I can only imagine how much parents wish the problems would just go away, who can blame them, but hopefully in the future, between the medical industry, and parental support teams, the maudsley method will prove effective more and more :)

  8. Having a choice is important, because there shouldn't be only one option. And all the options should be well-conceived and supported!

    A tool is only a tool. If it isn't applied in the right situation, not done properly or with the right spirit, or offered without enough support then it isn't the tool's fault.

  9. Lisa I am sorry that your experience has been that residential and php programs don't support you as parents. I agree that this seems to be partly because it can be against their financial interests.

    I confess that I am "Anonymous" above with the quote about following your treatment team's advice. I didn't sign the post because I was posting from work and had to be quick, not because I don't want to be traced and sued by the originator of the advice' However I am sometimes worried that such cynicism about the motives of clinicians won't exactly endear the parent community to all involved. Does it matter? Yes, actually it does because as A has said, we as parents, and much, much more importantly, our loved ones, often need more than is available in our own homes, need more support, need respite care, need advice and training on medications and meal plans and safe restraining techniques, need sleep, could do with a cook and a maid...(OK I'm fantasising here!)

    It shouldn't have to be a choice between going it alone and sending the child far away. Restpite care and therapy in a safe place near to the home, accessible to the whole family including siblings, available 24/7 to ALL sufferers not just those at the top of the waiting list.... there are so many things that could make this better for all, but that will involve breaking down a lot of barriers, oh, and yes, it won't be cheap.

  10. A), I've been thinking hard about your experience. A professional can only act on what they know. Your parents' abuse and alcoholism was not known to them. Would it have been better for you to have this kind of problem at home and your parents NOT to have been seen by the professionals? Wasn't the chance better that an observant clinician realize that things were not right?

    You were in a very tough spot, no matter what.

    I'd rather see families in the care of a trained professional so that possible abuse could be identified. I'm so sorry that your situation was not and you had to suffer this.

  11. Laura, this is still something that causes me great anger and is difficult to talk about. An experienced clinician may have picked up on the issue, but then again they may have not. . .

    The problem wasn't recognized because both parents function well and hold down prominent jobs and are highly educated. . . They are not horrible people and do not fit that alcoholic stereotype.

    In additon, the psychiatrist who saw us simply did not CARE enough to question that far. This is not just my opinion, but the opinions of my parents as well -- He resented having to give up HIS time (where he would normally go home) in the evenings to have to coach ONE family so he could put his name on the study. He was bored with the sessions and came across as extremely patronizing -- which was offensive to my family who were concerned about me and my progress.

    He didn't really consider me to be AN (as my BMI was just threshold at that time) and told me that Maudsley was for individuals with only 10-15lbs to gain anyway. . .

    To put in perspective HOW inattentive he was --> on our first appointment, he decided to tell us a story about how he had dealt with SO MANY difficult chronic anorexics -- and how one had successfully hidden 26lbs under a hospital gown during her inpatient stay. THIS set my mind working. . .

    By the end of the three or so months that we stayed in the study, I had managed to stuff 14lbs under a loose skirt and shirt to make it appear that I was GAINING weight, when I was actually losing it.

    He was flabbergasted when he found this out, because I don't think he ever thought that I was capable of something like that. He never took the time of day to even ask WHY I wore the same clothes to each session, why they were so loose or why I was so careful when moving. As a psychiatrist trained in observation of behaviour AND AN you think he would have noticed this. I believe he would have if he had cared enough to be observant as opposed to considering treating my family a chore.

    You can see why I am biased against Maudsley and angry. I realize it doesn't always happen this way.

    In short, trained professionals will pick up that something is wrong if they CARE enough to do this. It also depends on the dynamics of the family in the session. . .

    I am not grateful for this treatment -- at all. I am filled with anger. It was one of the most traumatic experiences of my life for both myself and my family -- I have never been made so demeaned and helpless by any member of the medical profession.


  12. I'm so sorry that your treatment was so truly awful A:). Are you sure that this guy wasn't deliberately trying to bias the results of the study against Maudsley so that he could sell some other kind of treatment? His lack of care sounds criminal.

    I want to emphasise that our treatment was NOT like that. Our first FT was inexperienced in the method and new to the area. His assistant was not a great deal more experienced and looked about 12 - not a good combination BUT I KNOW that they were caring people who were trying their best. I think they were just totally perplexed when the whole family exploded in front of their eyes when given what was supposed, according to their couple of days training, to make them work together. THEY had no resources to fall back on, no plan B, nothing to offer us when we cried that we weren't doing well but "keep trying harder".

    That's why I'm so keen on the idea of getting ALL sectors to work together, all sectors to offer safe supported nutritional rehabilitation first and foremost plus therapy and treatment for co-morbid conditions immediately it proves to be helpful. Clinicians should have a choice of treatments to offer tailored to the individual client and a range of resources to offer - unless of course they are like yours A:) in which case they should probably just have their licences revoked.

  13. FBT not only saves the child. It saves the family. I too would like to see FBT combined with all other forms of treatment deemed essential on the journey to recovery. FBT participation may be painful in the short term, but in the long term, your children and grand children will be eternally grateful that you chose this path.

  14. Thanks Marcella,

    I wasn't suggesting that you had had a similar experience -- just that you had had an experience where Maudsley was less than the effective and could therefore appreciate that it did have some shortcomings. . .

    I'm sure the clincian saw his behaviour as appropriate. He quoted statistics like a robot and stuck by the manual. I DO think he believed in Maudsley: he told us it had a high success rate, etc.

    He never made any actually RUDE remarks besides telling me that "this was why he didn't treat 17yo girls" and making my family and I wait about 30-40 minutes past our appointment time while he got tea for himself.

    I just really think that he had just been forced to council a family when he really rather would have been home for the day. I also think he might have thought it was beneath him. He told us he ONLY sees medically unstable patients and only PRIVATELY sees a group of chronically ill AN patients on an OP basis.

    Our sessions were actually because taped. I think it was supposed to be a kind of "standard." -- This is not an experienced researcher or new clinician. . .

    When I think of the experience, I am always reminded of the saying "If you want to take the measure of a man, look at how he treats his inferiors" (or something like that :P)

    Rant over

  15. I wrote a post, and I think the computer ate it (I hate when that happens. . .) I will come back to reiterate later. . .


  16. When reading stories like A's above, it is a reminder that even the best treatment, in the wrong hands may not work. But I think this damns the provider, not the treatment. The treatment is new and I'm sure there is a learning curve, as providers learn how to help parents under different family situations. I liken this to a busy family who forgets to give antibiotics 4 times per day for a child's ear infection. Is this the parent's fault, or does the treatment need to be modified. No, the treatment needs to work for that particular family. It is still antibiotics, but once a day rather than 4 times per day. Now the treatment works because it is has been individualized for that family. I don't think FBT is quite to the point of being able to help different families differently. FBT may not use a dietician, but some families may need some help-how to provide that? FBT may assume both parents are mentally healthy, but what if they aren't? Shouldn't there be a way to give the parents more support? Eventually I hope these things will all be ironed out....and A's experience won't be repeated!

    For us the effects of FBT were profound, residential had been recommended, parents were toxic and FBT was our last shot. We weren't sure what would happen. But, in the first session, we were assured that we weren't toxic, our child had a serious problem and needed our help. The confidence and expertise of the FBT made us all feel we could do it. And after just a couple of sessions, we knew we could do it and we didn't need residential. It wasn't easy at all but I already knew that my d could eat in a hospital. It was time for her to move on and eat in the real world. Residential would just delay this important transition and she might think we gave up on her or she might think she was hopeless.

    Laura, I think that every residential program should keep track of some quality indicators. How many patients are discharged at their ideal body weight? How many of them are on medications? How many of them are enrolled in a transitional program after discharge? And how many of them are readmitted to another inpatient or residential facility within 6 months of discharge. If parents knew their child would be discharged at less than ideal body weight and readmitted to another program within a few months, it might prevent them from taking that second mortgage out on the house and they may want to find FBT and keep trying at home...

  17. I set out to respond to Laura's blog. but was overwhelmed with sorrow when I read A's response.

    Where do you start? Deconstructing that tangle: uncaring psychiatrist, poor treatment support, alcoholic parents, family secrets, CRAZY misunderstanding about the diagnosis itself (A "couldn't have AN" because she wasn't thin enough!!)... all this leads us to a hurt young woman.

    And she is not alone.

    As a clinician I see every kind of family. They all come to us, with the rarest exception, because they are concerned and want help for their child. Of course, if you practice long enough you will see parents who had to be forced (by their child's doctor, school, grandparents, Child Protective Services) to seek help for their ill child, but this is very rare. Even the most misguided of us is hard-wired to love our own children.

    What kind of family "can't do" FBT with us and is sent on for residential care? Those with, say, 6-10 children and no help (this is not as uncommon as you think); those where one parent is violent towards the other or towards the children, those where one (or both) parent is mentally ill and not adequately treated themselves; those where one (or both) parent is eating disordered as well and will not get help; the single parent who has to literally work all the time and has no help. And those who have become so exhausted in the effort that they cannot listen to us say, as you do, "when you return from residential care you will still need to have the tools to fight, and they will not give them to you there."

    Your concerns, Laura, about the long-term inadequacies of residential-style care is one I share. As you know, we offer outpatient follow-up once treatment has been initially successful because we have seen one child after another relapse after expensive residential treatment where the parents were not included and not taught any skills to fight back, long term, on their own. We struggle ourselves to design the "ideal" program to support parents at home. Our patients do have the back-up of the hospital if things get out of hand and of advice as well---though I'm not sure how much good this does for those who are not "our patients".

    And one last thought: there are uncaring, indifferent providers (like A's psychiatrist), of course, but sometimes when a child' parents are not able to care for her/him or follow-through with the treatment we providers feel is essential (weight gain!), as people we, too, become anxious, desperate and sad and in so doing lose part of our ability to be empathetic towards adults when we are scared for the child.

    At the very least, Maudsley and other family-based treatments have thrown open for discussion the role of parents in the treatment of their own children, something that did NOT exist before.

  18. A, so sorry for your experience. I think it's omportNt to note that a good clinician is a most valuable resource and a bad one can be most detrimental, regardless of their supposed methods. This aspect has always frightened me because as a nurse in the field of medicine, I have seen md's who range from brilliant to mediocre to done right malignant and dangerous. In mental health, this unfortunately exists as well and we are all so vunerable to the even the quacks. I think we need to ask to right questions. Give someone who feels right a chance and make a change if that needs to be done. I have found fbt so useful, even while my daughter was in residential treatment and I was able to use the skills and understands I learned to be most effective in my interaction and assistance to my daughter and her treatment team. And it's ongoing...

  19. A:),

    I'm glad you described your harrowing experience. It is so very sad to think of the ways you have been let down.

    This experience says a great deal about this clinician, I'm afraid, and nothing about Maudsley, because that is neither the methodology or the good practice of it. What you are describing is just bad therapy and possibly malpractice.

    I don't care what you call it, or what manual or protocol you say you are following, if you are failing in the basic skills of therapy or, well, humanity, it isn't treatment at all - it's further abuse.


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