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Friday 16 March 2012
Beat Eating Disorders International Conference: Day 1 Report
A guest blog from the wonderful E:
So, some thoughts on an eating disorders conference (EDIC, London, 2012). Day one and, to be fair, not directed at carers – this was a day for clinicians.
A truly beautiful day in London – a fabulous view from the top of the bus en route to Russell Square – the sun lifting the mist – only to be followed by a plunge into a piece of Brutalist, 1970’s concrete, albeit Grade II listed, where we were based largely underground and under low ceilings. I have to say I was really missing windows by the end of the day. Architecture aside (not really the point of the day) what was on offer on day one?
The keynote speaker, Professor Terry Wilson, psychologist, (Rutger State University of New Jersey) spoke on the ‘Dissemination and Implementation of Evidence-Based Treatments for Eating Disorders’. In this context, Prof Wilson was talking about Bulimia and Binge Eating Disorders and about evidence-based treatments for an adult population, with the disclaimer that there are no evidence based treatments for adults with Anorexia Nervosa. (For the record, Ivan Eisler was at pains to point out later in the day that there is an evidence based treatment for AN in adolescents - family based treatment - and suggested that anyone who hadn’t heard of it should attend his workshop!)
Broadly speaking, the keynote took a view that evidence points to the fact that patients are not receiving empirically supported, evidence-based treatments across a range of psychiatric disorders. The speaker wanted to look at the obstacles (misconceptions on the part of practitioners and other scientific and training matters) and at the barriers to dissemination and implementation. His talk centred on the fact that clinicians are (increasingly) eager to learn but that there is a need to: improve training (both methods and supervision); identify and assess competency, and to refine the evidence-based intervention to ease its implementation and to refine its scaleability.
He quoted Thomas Insel, not renowned he pointed out, for his psychosocial bias: “We have powerful, empirically-supported psychosocial interventions, but they are not widely available”. Thomas Insel, known for his brain bias, becomes of more interest to those who are not when he talks from this different perspective; so we are left looking at why so many patients who might benefit from these interventions are not getting them?
The talk was an eye opener for me. We know, from our anecdotal database on ATDT, that the quality of therapists and the treatments that they offer is wide ranging and hugely variable – that the label given does not always mesh with the treatment we think that we have understood. I had always assumed though that there was some kind of professional body that would (or at least could) regulate or oversee in any given country, at least for the recognised and manualised - that there was some kind of standard for training at least, even if not for practice, but it turns out that those in the profession are worried about how training is accessed and administered, how it might be assessed and supervised, how it can be maintained. How the CBT therapist, using behavioural change at the heart of what they are ‘selling’ to their patients, manages behavioural change themself – do they really know what they are using? Who is checking that they are using it correctly or maintaining it?
Now that I am back home, and with access to a few resources, I can see that there is nothing ground breaking in this speech, that Professor Wilson is quoting from already published work, that people have been noting and, to some extent, working on this for some time. But, at the time, it made me think about what I was going to take from this speech and it occurred to me that, while I may not be able to directly influence what the professionals do about this particular problem, our time spent educating ourselves on what is available and who is good at providing it and talking to each other about our ‘end-user’ experience, has its own purpose. There are many professionals who I am sure mean well but who may be in way over their heads and without supervision, there are those who just don’t even know where state of the art is. In amongst these, there are those who do, and who are or have been well trained and well supervised and who may be able to make a difference and it is the latter class that I would want to find and have highlighted for me. By sharing our experience when what we find is good, we can perhaps encourage change as others question why they are not recommended - a slow drip, maybe, but one that takes us out of a role of total passivity in an area crying out for regulation and improvement.
During the course of the rest of the day, I started to wonder about some wider issues of where I sit in this ed world. No longer, strictly speaking, a carer – my daughter has been recovered from her eating disorder symptoms for nearly three years – but not a professional or a formal student; either, why was I here? I felt that I was, highlighted, as a cheap, pink-ticketed poor relation in a conference full of white-ticketed professionals. The professionals were having a rare opportunity to come together and to talk amongst friends and colleagues (although I am sure there were a few foes amongst them too) and were not particularly interested as far as I could see in widening their circle yesterday (with some notable exceptions, Dr Kate Tchanturia and the also rather wonderful Dr Siliva Dahabra amongst them) but I have no real complaint about that – it was not their role yesterday to network with carers necessarily (although a certain basic level of politeness, was occasionally, and rather gallingly, lacking on the part of some). But I was acutely aware that we are sometimes too inclined to refer to ourselves as “only” (a carer) or “just” (a parent ) and I think it is time that we stopped belittling our role in this way and considered ourselves a more important part of the whole.
I listened to clinicians talk about the need, in a clinical setting, for support, understanding, pre-warning, pre-planning, careful management and close supervision when using interventions highly likely to cause extreme anxiety driven reactions and distress in their patients; how these would be distressing for the clinicians to witness, how they would be tempted to call the intervention off because of the distress all round, how, once underway, that would be acutely damaging to do so, and about how the particular intervention we were concerned with was the ‘grand finale’, the ‘car chase’ at the end of the action movie of eating disorder recovery and so, implicitly, magnified in some way from the more quotidian experience of re-feeding/weight restoration which was, in their view and in an outpatient setting at least, a more stepped approach than a flooding one. I listened to their descriptions of what this anxiety might look like and know that I was not shocked or surprised by it and that I have seen similar and worse sitting around my dinner table and have had to manage it without meticulous pre-planning, un-warned, unsupported by any supervisor because my situation was not a clinical appointment but simply lunch with my daughter, and I sensed from what they were saying that they were not aware of this reality.
So what did I take away yesterday? That the clinicians are aware of the limitations of their knowledge and are eager to improve on this fact, that they would like to improve upon how they administer and disseminate what they do have an evidence base for (at least, in certain areas), that there are is no consensus on cause and treatment, that there are some very good and very caring people working in this field, that others are not particularly inclusive or are academics as opposed to hands-on practitioners and that combining the two roles is not necessarily a given or easy, that new avenues are being examined closely by some impressive people in various fields and are cause for optimism, that the work seems often to carry a heavy burden of being conscious of and trying to work with cost implications and limitations and that this can sometimes make it seem more about economics than about care (although I guess we cannot avoid the practicalities), that sometimes, something that you would be inclined to dismiss because of previous experience or prejudice may surprise you; I could go on – there is so much more and there are two more days to go. Most important for me though, I took away that those of us who have been involved at a carer and not a professional level and who choose to try and carry, in some small way, that torch forward, might examine our role anew, at how we continue to gain a voice and an influence, to be taken seriously and not to, unconsciously, diminish our own status – to understand that we have a place and something to give of our own. I took away that Laura has done so much more for us in this respect than it is easy to appreciate and is, in fact, widely respected for her work, if just a little bit feared by those who, in my opinion, have a way to go before they are able to work with a true generosity of spirit and in true collaboration with all those who are able to contribute and who care most about the outcomes for this particular clinical grouping. I took away that if we don’t take ourselves seriously as a legitimate, useful part of the picture, it should not surprise us if others don’t either.