Sunday, March 22, 2015

A reply

Friends have been commenting on this article in Psychology Today. I thought I'd have a go too, but the comments forum doesn't like me and has rejected my comment as spam. Since I spent an age sitting in my PJs writing it when I should have been getting up I thought I'd post it here rather than just swear and give up. As you'll see it has brought out the boxing kangaroo in me.

I too have been to lectures and conferences and seen seas of desperate faces. I've seen sniggers and condescension from "professionals" at those faces too.

However as many others have pointed out things are changing.

The greatest body of evidence for treatment of adolescent Anorexia Nervosa (and to a certain extent other eating disorders) is for Family Based Treatment - treatment initially pioneered by the likes of Prof Ivan Eisler in the UK and further developed in the United States. This treatment very much involves the whole family in temporarily giving up almost everything else in a bid to save their daughter (or son) and then when the danger is past, gradually handing back control of eating to the individual as and when s/he is ready. 

It isn't easy. In fact it is grindingly, terrifyingly hard. None of the papers or books, even, or perhaps most especially, those by its main proponents, prepare the family for just how hard it is. And yet, because it is the best available treatment and certainly one of the cheapest, FBT is being offered in various degrees of faithfulness to the manual (by Lock and LeGrange) by many if not most CAMHS teams in the UK. Good, if basic, training designed by the team at the Maudsley Hospital is now available on-line to all CAMHS clinicians.

So we have a situation where many families of children with eating disorders will be being asked by the clinicians to whom they go in desperation to work out for themselves how to save their children's lives. In the best cases they will receive tailored support. In many more they will be lucky if they get a general leaflet about eating disorders and the suggestion that they buy a book or two (hopefully, if the team are using the manual, Lock and LeGrange's Help Your Teenager Beat an Eating Disorder). With so little by way of practical support this "FBT Lite" treatment will be successful in many cases. Families can be very resourceful. Children want to recover even if they cannot express it or comply with treatment when consumed by mental illness.

However many families will struggle.

We did.

Maybe because of comorbid mental health issues, maybe just because we weren't as resourceful as other families, we needed far more outside support than was available from fortnightly sessions with a CAMHS nurse. When we sought it we came across the kind of "professionals" who snigger or condescend. NOT bad people, but people who genuinely believe that AN is some kind of choice made as a result of bad parenting, or pressures from social media and that the sufferer has to "reach rock bottom" and that parents should not interfere with treatment.

Those beliefs, shared by us to a certain extent (what other beliefs would we have, not having had cause to think of the subject before) really got in the way of our getting any concrete support to make a success of the model.

Our FBT experience was over a decade ago. I hope that things are different now, but I fear that they are not for far too many families. Headlines like this will not help. Parent organisations such as that set up by Laura Collins offering peer support on the sometimes lonely journey will.

I still go to conferences. There are still some desperate faces, but there are some very determined and a few very angry ones nowadays too. I will be the cynical one at the back making snide remarks. To the professionals, go ahead, snigger. I will laugh with you at times. Our journey with mental ill health and the services designed to help us has thrown up some very funny situations at times. Don't you dare look condescendingly at me though or you may regret it. 


carissajade said...

Well said Marcella. This is so frustrating for me and it really needs to continue being discussed. Thank you for sharing your opinion and experience.

carissajade said...

Well said Marcella. This is so frustrating for me and it really needs to continue being discussed. Thank you for sharing your opinion and experience.

Laura Collins said...

It is sad how behind I am in my blog queue that I've just gotten to a month ago! Just wanted to say, now that I'm here, how much I agree with you. It's weird for those of us with more experience can be both happy t see how things are improving but also more reasonably disappointed at the pace of change.

All this needs to be discussed and by more people!