March 17, 2014

EDIC 2014: What a difference four years make

Bliss
It was a good trip to London for Beat's Eating Disorders International Conference. 

Facebook profile photos and email addresses and Skype images became people you can sit next to and just smile with. A lot of that, actually, so delighted to be in one another’s presence. One dimensional relationships develop tangents and then shared jokes and new tenderness even on short "real" acquaintance.

My trip had me alongside F.E.A.S.T. families and friends formally -- in the EDIC conference sessions -- but also marvelously convened klatches of friends who couldn’t afford the fee or the time to attend sessions but met at nearby museums and coffee shops in a rolling three-day get-together I didn’t want to end.

I took city busses and cabs and the Tube, crossed bridges, ate Italian and Turkish and one night just “nibbles” that were so delightful I didn’t realize until I tucked into bed that I hadn’t really tucked in to a meal. My stay at the Russell Hotel was London charming: tiny room, palatial breakfast hall. I didn’t forget any chargers and used exactly as many pairs of shoes as I brought. For some reason I still, at my age, feel terribly adult when I negotiate all the transitions and packing and make it to the last leg without major snafu. Let’s not speak of the time I wandered away from my luggage… no one stole or blew it up.

The blue-haired ladies of EDIC
Recalled another London trip, in 2010 when I first met Charlotte and other dear friends here during EDIC. Four years marks real changes in the ED field and in the international community of those involved in EDs. On that first trip I represented a far more radical, marginal POV on eating disorders. F.E.A.S.T. was unknown to almost everyone I met and those that recognized the name more often than not did so with wide eyes more than admiration. I represented uncomfortably American and off-putting "activism" to some. The families I met were often bowed with despair and politely a-boil with anger.  

I see differences now. Far more active, informed and opinionated families. Sorry about that, England. More alliances with former and present adult patients – a really delightful aspect of the UK F.E.A.S.T. crowd. Less parent-blaming from the podium. More collaborative talk across disciplines and between families and clinicians. And, F.E.A.S.T. was often recognized as a resource to families in the UK and elsewhere, even thanked, as a collaborating partner in the parent, clinical, and advocacy worlds.

The shoes, the shoes!
I was really aware of subtle differences in language and orientation over here. The term “eating difficulties,” for example, has a gently-gently feel to it that puts me off but seems to work here. Being called an ostrich doesn’t cause a rhino reaction. I suspect the tendency to refer to people with eating disorders in the 3rd person is cultural, too.

The biggest difference is this: “anorexia” is often used here as a proxy for all eating disorders. I have always been jarred by it but more so lately and it jumps out at me here more than anywhere. But context is important and for those outside the UK’s NHS we need to remember the cruel reality that specialist eating disorders services are almost impossible to access if you are not at a dire low weight. You can have all the horrific psychological and behavioral symptoms of an eating disorder, you can binge and purge nearly unlimited amounts, and you can be quite underweight but you are only hospitalized or referred for specialist care for one late-stage symptom: extremely low weight.

This means the specialists in eating disorders really only see anorexia nervosa and only see those patients in extremis. The statistics, clinical experience, and resources are seeing one sliver of patients. The majority, the vast majority, of eating disorder sufferers are being seen on a non specialist, outpatient, local basis if at all.

It’s a self-perpetuating false view of eating disorders. It’s like defining infection only at the level of amputation-level gangrene. No one in the UK ED world likes this, accepts it, or doesn’t want to see it changed, but, when even dire ED cases have to struggle for resources it’s clear why the language has developed this way.

I live in a “system," the US, where we diagnose ourselves, seek out the kind of professional we believe best treats our condition, and get as much treatment as we can afford or our insurance will subsidize. It is often very bad care. It is often marketed to vulnerable families and then withdrawn when bank accounts are drained. We can get care for bulimia or BED as easily as we can anorexia, so our language and advocacy reflect that. Those who treat one ED also treat the others and has seen the range.

The British Museum, and we
didn't see the Vikings!
I realize I have offended many of my UK friends by asking them to change their use of “anorexia.” I recognize it is awkward to use the whole string of names, and to list all the symptoms. But I want you to think of the mum I met yesterday whose daughter, Kate, died of bulimia six years ago. This was the mother’s first ED event, the first time she felt strong enough to join in, and to pursue her hope of writing about her family’s experience in order to help others. This parent in the audience didn’t hear the word bulimia, or the symptoms of bulimia mentioned. The term “eating disorder” was meant to describe only restricting anorexia everywhere she went: the seriousness of extreme weight loss.  The term anorexia was used widely. How welcome did she feel? How safe?

True, nearly everything we can say about anorexia is also true for the rest of the ED spectrum. The parental demands, the professionals to consult, the issue of malnutrition, and the danger are all the same. But “Anorexia” is a specific sliver of the spectrum, not a term that can be fixed with an asterix or subtitle. Solution: let’s just say “eating disorders” for the spectrum and be specific on sub-diagnosis when talking about specific patients or treatments?

Helix team on duty!
Another theme I observed was the effect of how UK mental healthcare service is delivered by age group. CAHMS for children and adolescents, adult services over 18. The difficult transition to adulthood is familiar to parent caregivers in the US but quite limited: the difference for us is legal limitations on information and privacy, and sometimes in guardianship. In the NHS the difference is also in function: adult services deemphasize weight normalization, parental involvement, and even the goal of treatment. UK parents are terrified of that transition and rightly so. The reasons, unfortunately, are complex. Getting this fixed across the NHS would require both top-down and local initiative. People are trying, but it is a real problem.

Russell Park....
One side note to this is a shocking tolerance for patients not ever reaching healthy weights. When the standard for specialist care, for gravity, is a BMI of less than 17 (often lower) then we are actually talking about a system that not only fails the patients it enforces the illness’ dictates. Discharging patients before they have had a chance to gain normal brain function, and without a plan to reach it, is a plan WRITTEN by ED. An entire system that will not set the standard at full health is tragically wrong. What saddens me most is that this is even up for debate. I was deeply saddened this week, as I have been in the past, to hear clinician after clinician say that the standards are set low for the patient’s comfort and to keep their trust. I understand that this is the limits of the system, but should it be the limits of the clinical stance? What can we all do to support our UK friends to make the standard full and sustained brain nourishment?

Question: how’s that working for you? As a parent who talks to a lot of UK parents, it’s not. They want a health system that considers it a critical situation for a developing adolescent to be malnourished. Not just “starving.” Any malnourished child is in peril. And that includes bulimia, BED, OS-FED (EDNOS), and FED-NEC. Oops. Soap Box moment. (or Hyde Park moment, really)

I’m curious about how different cultures and healthcare systems interpret the existing science. For example, while the APA’s diagnostic category book, the DSM, is widely used in the US, and the categories are the standard in most research publication, but it is not widely used elsewhere clinically (um. the DSM manual costs $100+). That means we don’t all use the same terms and even the definition of the disorders may differ. The international standard, the ICD, has different dimensions and although it tracks mostly with DSM is emphatically not used in the US and not often in research – and some countries (learned this at EDIC) don’t use any. (France, call me?) So we are a tower of Babel when we really need some stone tablets.

My first croughnuts,
care of Miranda
One example of that is “obesity.” The APA, as described by Dr. Timothy Walsh at EDIC this week, looked at the science and concluded that high weight is not an eating disorder and furthermore not a mental illness to be included in the latest DSM. (I applaud this loudly, by the way. One example why was illustrated in a question from the audience asking why, if anorexia was a condition of low weight why wasn’t high weight the same thing. Walsh’s answer was that “obese” people typically do not exhibit pathological thoughts and behaviors, but people with other eating disorders do.

My answer is simpler: anorexia is not a weight condition, it is a mental illness at all weights. “Obesity” is a weight condition, not a mental illness.)

Selfie at the park
But “obesity” is still considered an eating disorder by many in the field, despite the APA’s stance. For those treating EDs in the US, or anyone using the DSM, this means no way to tick a mental illness box on their forms for reimbursement and no way to publish research on a mental health diagnosis that doesn’t exist. Good move.

My plenary presentation at EDIC went off okay, I think. People always say nice things, but I like to think I’ve gotten better at public speaking over the years and really did do F.E.A.S.T. proud, and the parent community proud, and that the four years since my last EDIC stage (with Fiona!) were good training.

As always, it’s in the hallways and dinners and lobbies where relationships are formed and nurtured, not to mention seatmates during presentations. I met many new people over the sandwich table and during coffee and after Q&A. My walk through London with Miranda was unforgettable (and involved croughnuts)! I had one meet up at a museum that turned out to be two separate museums – mine being the wrong one – giving me a free hour to sit in Russell Park and watch the London world go by. Another gathering was graced with gorgeous weather, a gaggle of dear friends, but far too short a time. I loved the opportunity to address Charlotte Bevan’s friends about the Helix, with backup by video from Cindy Bulik and a star turn by Susan Ringwood of Beat. Dinner out with S & G ended on the most hysterical interaction with the server not soon forgotten. And an al fresco shared bottle of wine at that most relaxed moment: after the speeches, back in flat shoes, but before going home to do laundry and catch up on email.
Miranda on Charlotte Street
I really, REALLY did not like the good-byes. Sue and Helen and Erica and Rachel and Fiona and Becci, thank you for your support and kindness on the Saturday, and beyond. Thank you to the Monsons for hosting a wonderful conversation with nibbles and the sweetest and most attentive dog. Big shout out to the KCL team for the professional and energetic Helix recruitment stall. Thank you to Beat for the invitation and F.E.A.S.T. for the support. Thank you to hubby for sparing me and carrying on (British sense, not US).


Charlotte, you were missed. You are such a part of the community.  Your voice is in our ear, and your attitude is there to keep us from anything maudlin or vapid. I thank you, too, for the bonds you made between us and how leaving us something to work on together has created new relationships. Still mad you’re gone, though, so don’t let it go to your head.

9 comments:

  1. Great observations! Thanks, Laura, for being there and reporting to us. So sorry, again, to hear about the sad state of affairs of ED treatment in the UK. Just tragic.

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  2. Maybe we scared the Vikings away.
    Kris, the state of ED treatment in the UK is poor, but (and perhaps I'm just defending the indefensible because it's MY indefensible, but here goes) I'm not so sure that it is worse than in other countries, just that we all have our different sorts of inadequate system. Here access to treatment is based on clinical need (and yes, absolutely, clinical need is judged on far too stretched a set of criteria and it often IS too late when help arrives) not the ability of the patient or his or her family to ask or pay for it. We definitely have a two tier system - acute care for the very sickest (and yes, they shouldn't have been allowed to become so sick) at hospitals where the researchers who spoke at EDIC work, and private general therapists using all sorts of therapies with varying amounts of evidence base for those who can both identify their need for such things and pay the ££££s needed to fund the sessions. We also have pockets of much better provision, fought for by dedicated clinicians passionate about furthering not only their own careers but provision for their patients, all free at the point of demand, and usually groaning at the seams as a result. I understand that the situation in Australia is similar in some ways, but complicated also by the vast distances involved in travelling from one area to another. At least we are spared most of the slick marketing and huge fees offered by some of the providers in other systems. Care and understanding of these illnesses is appalling the world over but we can continue to fight to improve things

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    1. Oh, dear. I've annoyed!

      Everything you are saying is tragically true. I'd rather be in the NHS, in many ways. I find the fact that finances are the difference between access and none for us. And that system doesn't make the treatment provided any better: you can pay a lot for useless treatment here.

      Please know that I am calling for improvement in all systems, but different improvement needed in each!

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    2. No, you haven't annoyed - I know that is what you meant - that we need to pull on our big girls' pants and fight for better treatment EVERYWHERE, we just may need to use different language and have different emphasis in different places.

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  3. It was great to meet you - and you really did do FEAST proud! I loved your presentation and your passion blew folk away. Most of all, you made us think x

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  4. and yes, Charlotte was with us all all the way through it

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  5. I may not be a part of the "group" but I do understand how frustrating it is to change a system, any system. I didn't want to risk my own daughters life waiting for them to figure it out. Facebook has connected many of us to new and old friends alike. Recently, I came across a post of the untimely death of a young woman, the daughter of a grade school friend. I wondered, could it be an ED? After reading the blog shared by her friend I realized I was sadly correct. So here I sit, with all my knowledge and readiness to leap but this damn disease remains a private one. If I only knew I might have helped with support and direction. Yes, she had fancy treatment centers here in the states and much love as well. It's obviously not enough when the illness is so embedded it becomes who one identifies with rather than seeing the disease as the enemy it truly is and booting it out.She had grown up with this horrible disease and the medical people apparently do not know how to treat many cases that start so young. I hate feeling like I failed her but it must come with the territory of knowing about these disorders. Her family is taking peace in knowing she no longer suffers but me, I know what a beautiful life awaits when treatment, at HOME or with good help works. I am not married to the medical system here or against it. I just think a mom/mum can offer a powerful bit of support when we understand that nourishment is essential. It's basic common sense and a degree isn't in my backpack. I just wonder if an army of mothers and loved ones isn't better or as well equipped to fight this. I am glad no one took this power from me. I'm not sure we'd be done and onto that beautiful life here if I was ordered to use the professionals. I mean no disrespect. I just know how fiercely determined I was to see this monster removed from our lives. I didn't remove it...I handed my child the sword and of course the nourishment that was needed. I understand that some are more stubborn and that ED's are sneaky. Still, let's not throw away one of the best chances our kids have, ourselves. ~ Mary

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  6. I also live with this particular health system, and I note (and weep for) its failings too, but, Kris, we are not quite in the realms of full-blown tragedy - we have foundations on which to build, and Laura's comments bring hope to many of us living here. What Laura has done is to call some of our problems for us - plainly - and Laura, I love you for it, and I know that people are listening to you; it is when we fail to question what we have, perhaps, that the hope finally drains away.

    The UK is mostly full of good intention - history can probably attribute our habit of "meaning well" as our greatest blessing and responsible for our most heinous crimes, and much of our greatest treatment failings may be predicated on over-thinking this particular angle. Laura, you have a knack of making friends and making people want to listen to what you have to say. Well meaning people who refer to all eds as generic anorexia or get the wrong end of the stick on diagnoses, those who think that children and adults are entirely different in their needs for confidentiality and treatment and family support or who worry about ability to tolerate higher weight goals, have, maybe, not yet considered these things carefully from another angle, but I hope that this may not preclude interest in improving or in listening to a well observed point of view - I am counting on it in fact in order to keep up with the sometimes unequal struggle that this can feel to be. If anyone can persuade someone to listen, it is probably you.

    Not sure if I said it to you (and not sure that it is my place in any case) but thank you for "showing up" here - we can always benefit from your particular brand of openness and challenge, coming as it does with an outstretched hand and in pursuit of common goals, and there are many more than me learning from both your approach and your wisdom; your trailing "fan club" (of which I am, of course, a member) is testament to that. London plainly loved having you here, and put on her sunniest face; we are trying hard not to look a little wan without you as we start another week and take stock of the one that has just gone with all the good, the bad and the plain indifferent gloriously brought into focus by your visit to us.

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  7. It sounds like a fantastic trip and and a realization there is still so much work to be done. Absolutely hear you on the use of anorexia as a short-hand for eating disorders--it doesn't work. Interesting to hear how they explain the 17 BMI component--I've wondered about that as it's clear from what I hear from other moms that is a tremendous problem and a factor in keeping people chronically ill. Thank you for all the work you do and have done and for inspiring us all to fight alongside you.

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