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. 

Tuesday, March 17, 2015

Labels

I have had a little bit of a discussion with my dear friend Laura about the label "SEED"

Is it helpful or horrid?

I realise that in between my starting this post and getting this far Laura has written more and probably already answered some of the questions I'm about to ask, but here goes anyway. I will read her comments afterwards!

It's obvious to me that those who coined the term think it is extremely helpful, necessary even. In his work on the subject Prof Paul Robinson describes how he fought for his patients who did not qualify for life enhancing, and sometimes even life saving services because they "did not have a "severe and enduring mental illness"". In an atmosphere where those most qualified to help often don't even see patients as ill but as "bringing it upon themselves" surely a label which both stresses the severity of the problem and accurately, dispassionately, marks it out for treatment is to be welcomed?

But others see it differently. They see the label as consigning those to which it is attached to a half-life of  no, or inadequate treatment, doubly terrible because it is so often the lack of, or inadequate treatment that lands people in the position in the first place.

I would really like to debate this.

Probably in order to do so really well I should read the books. I have an Amazon token for my birthday. Maybe I should spend it on the main textbook, but I'm going to buy fun DVDs instead, starting with that film famous for the label given to its central character, Paddington Bear.

Thursday, March 05, 2015

No Friends, No Family - I'm footloose and fancy free!

The Friends and Family Test is the government's latest wheeze -ask people the same standardised questions about all of the various departments of the NHS and you'll be able to compare them and "choose" the best treatment for you and your loved ones - or not as the case often is. I've sneered at the waste of resources, sighed at the effort of having to impliment the stupid thing within my own tiny corner of the NHS, and then dilligently filled in questionnaires for every service with which I have had contact and enthusiastically googled for any results that have been published so far. Such is the life of the hypocritical cynic.

I did find it difficult to fill in the questionnaire for the mental health Trust. This wasn't as it might have been some years ago because of the conflict within myself over where exactly the problems we faced lay - with them or us - but because in order to start the thing you are supposed to have had recent contact with them, either as a "service user" or carer, and I haven't. My caring responsibilities have lessened as my loved one has grown up, and her contact with the local services terminated rather more abruptly than anyone would have wished when she moved away from home. I might need the service myself some time in the future, my children or grandchildren might move back to the area and need it, but for the forseeable future I have no friends or family who would be likely to go anywhere near them.

THIS IS A VERY LIBERATING FEELING

I can put my head over the parapet, get involved in pressure groups, ask awkward questions and NONE of it risks having unintended consequences on my loved ones' care. I'm free enough to take my shoes off outside Buckingham Palace and I'm free enough to be a pain in the neck to the Trust board - watch out!

Wednesday, February 18, 2015

On both sides of the fence

This post will be even more obscure than most. Unlike many of my friends I am not a writer. Therefore this won't in any way be inspirational or educational for you. It's more like therapy for me, except that because it is public and you can see it I can't go into even the most sketchy of details, so it isn't that either. Suffice to say that although this could be about the conflicts I face combining political animal with realist, or religious observer with cynic, or wife with mother, it happens to be about being both a passonate supporter of and employee within the NHS and a parent advocate.


The chap in the picture looks fairly comfortable on his nice smooth fence, but then he's not making any effort to put a foot down on either side, let alone both, or to move in any direction.


I sometimes find myself in the position where, not only do I have one foot on each side of the fence, I'm desperately trying to walk with the people on both sides at once, not out of some false sense of "being nice" but because I genuinely believe in their cause. Even with a pretty smooth fence that can hurt!

Thursday, February 12, 2015

Still living...

I'm posting this because I'm about to comment on someone else's blog and don't think it fair to be public about his views without at least giving a link back to me.

This is me, Fiona, aka Marcella, and I'm still alive.

Tuesday, March 18, 2014

Helpful collaboration or sleeping with the enemy - or why is your hair blue?

"Collaborative Care" was the buzz word a couple of years back. I was never 100% sure it wasn't a bit like "The Recovery Model" or "Reconfiguration of Services", i.e. a good excuse for cutting State provision without anyone noticing, but in the sense that it was used to mean that people who are unwell need a circle of care rather than one great healer, I approved.

I didn't hear it directly referred to this EDIC. Hopefully that's not because the research and treatment worlds are busy working on new and improved techniques for parentectomy, but rather because it is now taken for granted, oh and because no one can possibly make any more cuts by stealth.

Hard fought for, or taken as read, collaboration isn't always easy, or right. When it is with the illness we smugly call it "collusion" as if we're always able to tell the difference between the best interests of the individual and the disease. In war, business or politics it can be referred to as "sleeping with the enemy" but who is my friend and who is my enemy?

I sniffily pooh pooh the private sector and rant against the allocation of resources that could stay within the NHS to private providers. Yet some of the most sympathetic and kind people I've talked to at conferences have been from private facilities, and anyway, the GP's surgery, the backbone of the NHS, has always been a private business. As someone who has been brought up in the ED world to seek evidence based care, I am naturally drawn to collaborating with those who aim to provide it, only, sometimes, to find that they aren't in the least bit interest in collaborating with me or mine. I was thrilled at the idea of collaboration between drugs companies and ED researchers. Think of all that lovely money, and the acceptance and fighting of stigma that it can buy. A dedicated and thinking friend was appalled.

For what it's worth, I am delighted at the collaboration between BEAT and FEAST for EDIC that allowed me to have a fantastic time laughing and eating and sharing the secrets of having blue hair with Laura. I don't personally go for campaigns collaborating with the popular press, or centred on the fashion industry, or concentrating on teaching me to love my body, but I'm OK with the idea that others may wish to. I'm proud, when asked why my hair is blue, to give two answers. The first, to those who might have an academic interest (or cough up some money) is that it is a fund and awareness raiser for an initiative in collaboration with Kings College. The second, to family and friends, is that is is in collaboration with my dear friend Laura to honour Charlotte. Yes, both those links are the same.

Monday, March 17, 2014

Learning to play the violin

Although music wasn't my first love, it won't be my last, and I could live without it, I do appreciate it. I am also appreciative of the role it can play in healing the mind. I really am. I believe that music therapy can work wonders. However I don't know anyone who would offer music therapy as the ONLY treatment for anything, let alone a life threatening illness.

It is the same with talking therapies. They can be very useful. Exercises and re-thinking can literally change thoughts and even the brain, but they surely can't be even expected to be the front, the only line, of treatment for something as deadly as an eating disorder. And yet this appears to be what happens to so many.

I attended a workshop on a "second wave" therapy for eating disorders at EDIC. I won't say exactly which one, because I don't want to single out either the therapy or the speaker and because, for the purpose of this rant, it doesn't really matter. In fact the speaker didn't really explain the history of her treatment or the difference between it and any of the other ideas based on mindfulness and kindness that are being talked of by so many at the moment.  The audience, most of them steeped in training in psychology but without a medical qualification or any expectation of power or influence in the physical care of the body of their clients, were asked to practice peaceful understanding of their clients' struggles, and to empathise with them.

All well and good, but if that's ALL that patients are getting, and often it is, then it is really just fiddling while Rome burns. If we put enough resources into this kind of training without adding full medical care with a robust understanding of brain health then we'll very soon have whole competent orchestras who can play while the boats go down.