Friday, October 05, 2007

If only they knew . . .

Over the last two days I've collected quite a bit of material from the many residential treatment centers that are exhibiting here at NEDA. I'm going to be writing about a few of them, starting with the brochure from Rogers Memorial Hospital in Oconomowoc.

If only the people who'd put this slick piece of marketing together knew how parents really reacted to it--or should. I already have an opinion about the programs at Rogers, but if I didn't, this would certainly sway me.

For starters, the image on the cover is of a girl. A young woman, really, maybe 14 or 15 years old. She's smiling, she's very pretty--and she's excruciatingly thin. It's hard to tell just how thin because she's wearing a hoodie over a shirt. But she's a lot thinner than I'd want any child of mine to be. Is she supposed to be recovered? In recovery? Newly arrived at Rogers? If this is a picture of the Rogers recovery, I'd run in the opposite direction. Fast.

Then there are the words that go with this image: "At Rogers Memorial, we utilize proven, evidence-based treatment components that give individuals with an eating disorder the best chance at recovery."

So far, so good. But there's more: "Our philosophy encourages self-empowerment, so that the individual's recoveryt is a result of his or her own success."

Uh-oh. If I'm a new parent I might think this sounds good. But everyone else will read this and know what it refers to: the tired, disproven notion that the individual must "choose" recovery.

Next come some quotes, presumably from Rogers patients, though they're not identified. Top of the list: "The treatment and therapies helped me realize it was my choice to get better." I say stop reading right there and throw the darn thing away. But if you insist on continuing, you'll find this one: "The art therapy was extremely helpful and provided another way for me to explore my eating disorder."

Explore your eating disorder? Honey, I don't want you to explore your eating disorder. I want you to RECOVER from it. Big difference. In fact we may be talking an oxymoron here.

Seen enough? No? Then turn the page for more on the Rogers approach: "Our treatment approach encourages self-empowerment. From admission to discharge and aftercare planning, individuals are involved in every step of the treatment process."

As the parent of a child who's recovered from an e.d., I can't think of anything worse than to have my child involved at every step of the way. As those of us who have been through this know, a child is INCAPABLE of "choosing" recovery, and when she's very very ill, such insistence will a) prolong the course of the disease, b) make treatment ineffective, c) exacerbate the child's already sky-high anxiety, and d) make veryone involved feel guilty as hell for not being able to "choose" recovery.

And here's the thing that gets me: This brochure is supposed to be marketing the program, making it sound irresistible to parents.

I'd say the Rogers folks haven't got a clue about what at least some parents want. And judging from this brochure, I'd say my confidence in their ability to help my child recover is pretty minimal.

That's it for tonight. I'll pick apart some more tomorrow.

6 comments:

Deja Pseu said...

It sounds like they're still operating from the "domineering parent" theory of what causes ED's...

Anonymous said...

Perhaps this says more about me and my sensitive brain-stomach connection, but the thought of a brochure for an eating disorders program makes me feel like throwing up. Ugh! Eating disorder treatment may have advanced in the past 30 years, but at least back in the 1970s, the hospitals weren't spending my parents' hard-earned money on glossy photos of victims!

Tracey~ said...

Harriet,

This is EXACTLY what I have been nagging at everyone about for almost a year! No one listens!

Fairly recently, I was also highlighted by someone telling me a client of hers attended Rogers for almost 3months! and was exercising completely unmonitored in her room, this girl is 13, losing weight while in the program; yet her parents were completely convinced this was working- I was shocked. What mess are they going to have to clean up in addition to the continued care and refeeding after she returns home? Until next admission, another failed attempt?

Our "team" was doing nothing but pushing us to admit our d to Rogers, and thankfully our insurance initially regected the admission, while we were still trying to figure everything out. Then after we toured the "Maudsely based" Intensive OP program they have we were horrified at what they were NOT providing. It is a very costly illusion!

Only a handful of staff, and maybe one or two at best have taken a two-hour training at the University of Chicago- and they are flying by the seat of their pants, only going by a textbook to provide treatment to their patients! If anything they should not be publicizing that they "utilize a Maudsley base approach" whey they do NOT- please!

This is a joke, and I tried to highlight this to the Maudsley Parent site, but last time I checked Rogers is still on there- yikes!

Rogers originally was focused on OCD treatments, but as you can see if looking closer into their programs, they are all over the place and just booming and expanding- hardly where someone who is looking for support and complete focused treatment for ED's may want to go. They don't offer anything for ongoing parent/community support and coaching, so that is already another red flag. They want to warehouse and keep patients coming back, they are not interested in recovery- period. This is a money-maker, when will this be exposed for what it truly is?

Your child will be locked up, you will not be able to see him/her unless they "earn" visitation, so they will be making hysterical crying phone calls home, pleading and begging to leave, and probably lose those "privileges" too, because these "methods" work; all behaviorial, carrot-stick good-doggy re-training.

Most frightening of all, your child will be surrounded by heaven knows who, and you will not be given any guarantee of who is providing daily care, just random trained staff, who make comments that ED's patients "manipulate", "lie", and are ill "on purpose, for attention", etc.; maybe one Dr/therapist who might see your child also randomly, with way too many predetermined views and various training, lack of training/experience and backgrounds- a sure fire route to a positive outcome- NOT.

Then the ultimate in horrifying, the vast arrary of other patients with ranges/years of severity, relapse, repeated admissions within their recovery, are all going to be there- and I'm sorry, but the last thing I want my 13yr old d surrounded by is this. And they will attend daily group sessions together, which is, in my opinion far more potentially damaging than helpful, and be in daily contact with one another, where so many things are unmonitored- how is this idea of "treatment" really considered appropriate anymore?

And furthermore, why the hell do they keep shoving this down every parent's throat as the answer to recovery/treatment when the clinicians, RD, therapists, etc. are the ones who give up, and simply want to pass the buck- which is a human desperately struggling, but not being adequately and effectively helped?

Those instantaneous "results" that look good on their paperwork/charts to cover their asses might perhaps put them and their methods into question? Fear of getting frustrated, or encountering setbacks within recovery seem to really play a part in this push for IP treatment as well. And I can only honestly say after almost a year of home refeeding, extremely shoddy care, no coaching support, that dealing with setbacks and frustration are all part of the process!

I think it's also that the medically-trained mindset does not want to admit to mistakes and allowing a natural vs forced relationship to unfold, as well as seeing a patient as a WHOLE individual entity, and resist breaking him/her into pieces, especially through useless therapy modalities that are so pitifully outdated here in application for ED clients.

I also greatly detest the idea and practice of using patients and families as "guinea pigs", endlessly, if the "team" really has no idea what it's doing and the families are not aware of this, and then only see it continuing to unfold per clinic visit.

Then there is no serious redress and redirection to strategize new goals, and keep full communication with parents, letting decisions be made by social workers, dieticians who bring patients to tears by being rude and frankly obnoxious with their own food rigidity! And there is no recommendation other than leaving the state to find care- WTF? Who is failing here?

I'm constantly dumbfounded after all these months that this is where we are in the area of treating ED's. I'm quite peed-off, actually. And when you're not in a financially flexible position to throw $$ any which way for treatment, and so many of these "options" are really unquantifiable to begin with- why are we left only to keep taking all these potentially harmful risks over and over? When will treatment become more affordable, covered- fully, and sane?

When will these clinicians who are working in the field, and I'm not writing about the one's who we all know are doing the real work!- but the one's who are just feeling their way in the dark, keeping a running bill going when zero has/is being accomplished, keeping parents/patients at a distance, begin actively resourcing and collaborating with respected and qualified others who HAVE the experience, and can provide additional ongoing training and support?! When? How long do parents have to wait for this?

Thanks for reading my rant of the day!

Best to you Harriet, keep steady and raise hell!

Cheers~ *T

Anonymous said...

Harriet, thank you for providing this information about Rogers. Here is a quote from an article linked on the hospital's Web site. This shocked me: "The first thirty days in treatment are focused on reducing counter productive patterns, such as restrictive eating or bingeing and purging after eating. It takes most patients about a month to begin restructuring their disordered eating and thinking patterns into productive behaviors that support nutritional stability. This stability is evidenced by weight gain, which usually does not begin until the second thirty-day period. That is why length of stay has such a high impact on successful recovery." It is unbelievable to me that the staff of this facility find it acceptable that no weight gain would occur for a month of treatment (dollar signs ringing all the while).

carrie said...

I've been to Rogers. I wouldn't send a dog there.

I was told that choosing to eat would be empowering for me. So I got to pick both what appeared on my tray and how much I did or didn't eat. I lost weight. Even I thought it was ludicrous at the time. One staff member was quite lovely, that I do remember.

Brochures in and of themselves don't bother me. Many good, evidence based programs have brochures. But the one you're describing is ridiculous.

Carrie

Harriet Brown said...

Anonymous,
That *is* appalling. No weight gain for a month?? Which actually means weight loss, too. I would be so pissed off if my kid failed to gain or continued to lose weight in the hospital.

Carrie, I'm sorry you wound up in Rogers. Bummer. Brochures don't bother me either, unless they're full of half truths or out and out distortions.

Tracey, there are some good clinicians and researchers out there . . . but I've been kind of surprised at some of the stuff I've heard here. I thought no one believed these things anymore. I was wrong.

More on all this tomorrow . . .