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. 

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.

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!

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!

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.

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.

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.

Holes

I have never much liked this poem;

“I walk down the street.
There is a deep hole in the sidewalk.
I fall in.
I am lost... I am helpless.
It isn't my fault.
It takes forever to find a way out.

I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don't see it.
I fall in again.
I can't believe I am in the same place.
But, it isn't my fault.
It still takes me a long time to get out.

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in. It's a habit.
My eyes are open.
I know where I am.
It is my fault. I get out immediately.

I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

I walk down another street.” 

It wasn't until I saw an illustration in a talk by Professor Janet Treasure(that I am cross not to be able to find to include here) that I began to reflect on why. The picture shows a person down a hole, and his friends and neighbours helping to get him out. Isn't that so much better than leaving him to do it all alone? 

 If I was initially cross with the poem, when I heard it repeated at EDIC I was FURIOUS. We had just had a panel of speakers talk about their experience of eating disorders. One of the speakers was a bereaved father who spoke with totally justifiable passion and anger about the way his daughter was allowed to fall through all the holes in the system and die at 19. 

So here, with a nod to (but NOT an apology) to Portia Nelson, the original author of the poem is my version

“I walk down the street.
There is a deep hole in the sidewalk.
I fall in.
I am lost... I am helpless.
It isn't my fault.
I think it will take forever to find a way out.

My friends and neighbours gather round

With ladders and ropes and skill and determination

They haul me out

And take me to a safe place

To heal and to rest

While the more vocal of them call the council to mend the hole

When I am better

I join in campaigns and petitions

And working parties

To have all holes in the country filled in

And mindful of my vulnerability

I am vigilant while walking down streets

My friends and neighbours help me

With the petitions and campaigns

And accepting my vulnerability

Offer to walk with me if ever I need to walk down 

A street that is unfamiliar or dark

I never fall down a hole again

 

 

EDIC

Marcella has been to the Eating Disorders International Conference in London and her next three blog posts will be inspired by it.

It wasn't without its problems. For a start it was phenomenally expensive. Marcella was only able to go thanks to the generosity of her alter-ego's parents who provided not only the money for the ticket but free board and lodging for four days. She could only spare the time because her alter-ego's loved ones are self-sufficient enough not to miss her for a while and partly because of a degree of presenteeism she has time left to take as leave from her job.

On the day that she attended, and as she understands on the other days, the presentations were of variable quality. Some of them were great, some disappointing, and some, she understands, just hair-raisingly awful.

However, on balance, she is deeply, deeply grateful to those who organised it. Even the less successful presentations were an opportunity to learn. All is NOT well in the state of Denmark, or in this case, ED-land, and from the amusing mistake in the advertising blurb for a large private chain of hospitals (they really should have got one of their patients to turn an attention to detail to their brochure before publishing) to the frightening tales of dangerous sounding therapies, this was an opportunity for interested parties to try to effect change. Conferences ARE expensive to put on, and much of the money must have been spent on flying over some of the best speakers. London is expensive, but was at its beautiful, sunniest best. The fact that the conference was on, and one special friend was here from a long way away, was an ideal excuse for some of us, even if we couldn't afford to get through the doors, to meet and laugh and share stories and experiences.

So, to all involved in EDIC, thank you. Marcella had a really good time.

More on Lent

It can't really be avoided round here, although work and some aspects of home life have meant that I've quite often temporarily forgotten Lent. As I can't ignore it or forget it permanently, and ranting about it appears to be counter-productive both in terms of the reaction I get and the effects on my own blood pressure, so I've decided to use the time for temperance. I think it's probably a bit much to try to justify a commitment against that fasting word by using the complete poem, but taken just a little out of context some of the verses of George Herbert's poem on Lent do at least encourage me to be temperate. The Love Life Live Lent programme encourages me to be joyful and this thread from my friends encourages me that it's normal to be ambivalent about the whole thing. And this quote from Irish Up just encourages me " We give up things that prevent us from being our best selves, instead. This is after all, far more in the spirit of the observance, IME.   AFAICR, Jesus says lots of things about treating each other well, and has almost nothing to say on the subjects of chocolate or donuts. And when he DOES talk about food, it's to feed people. Just saying."

It's that time of year again

Not May when I rant about communications, or November when I don't shut up, or even Christmas when I attempt to write individually to each of my friends and give up after the "Bs" in the address book and post a dreadful round robin on-line.

No, it's blasted Eating Disorders Awareness Week, which this year in the run up to, rather than actually in s*££ing Lent.

Of course both of these events are positive, inspiring, GOOD things. It's just that they are also hugely complex things.

There may not be such a thing as bad publicity, but there are plenty of examples of bad, and possibly even more difficult to deal with, mixed, awareness raising. At least I'm not alone in noticing this  in fact I can have fun grumbling and sniping and then doing something positive to get things to change with many friends

When it comes to Lent I am feeling more lonely. It's not as if I don't heartily agree with the bishops. It's not as if vile, unthinking critical crap on the subject like this or like this doesn't make me want to pull my hair out, it's just that I'm wary of that four letter "f" word FAST.

My friends in the eating disorders world have given me more examples than I can really cope with on the dangers of fasting and I have passed them on but I haven't yet found anyone, well, apart from one far too busy person, with whom to really discuss the matter. I CERTAINLY don't want to join the critics of the ideals behind End Hunger Fast or the Carbon Fast, or End Poverty Fast it's just that I think actually, my giving up meat for a month, or cheese for a week, or food for a day, is as likely to bring true awareness of, and help to, the genuinely poor in the world, as my pulling my hair out over those articles is likely to help those who self harm. While they would be a bad example to any vulnerable witnesses who decided to emulate me, neither of them are even going to give ME a clue about what it's really like to be poor, or mentally ill, day in day out for years.

So, I'm looking round for ideas on how to make the 40 days of Lent healthful, helpful and effective in the long term. So far, my only idea is to give out the Carbon Fast leaflets to the church's target audience, because they ARE a good idea, and it would be a terrible waste if they went into landfill on Easter Monday but to scrawl on every single one of them CARBON SLOW. Not very mature I know, but Lent hasn't even started yet so plenty of time to use it to grow up.

Rejoice! Rejoice!

For tomorrow is 1st December, Advent Sunday, bringing with it Christingle, Advent Carols, Advent Wreaths, Candles, Christmas Hope, Mince Pies, Mulled Wine, Parties, and above all the end of NaBloPoMo

A sense of self

I created "Marcella" as a semi-anonymous way of communicating. I still use her as such to comment on newspaper articles or NHS websites, although since her email was hacked she's less useful in those ways than she used to be.

I think I'm pretty good at separating her fiction from my reality, even if I did get an email addressed to her gently criticising me and asking her to get me to pull my finger out.

Whether I'll always be able to tell fact from fiction, keep my petty lies from spilling out, hold my head up high when walking through a little shower let alone a storm, who knows. If not, I hope my carers are as dedicated and knowledgeable as the staff shown in "Bedlam" and that at least someone on the ward likes the me I will have become.

A Clear Sense of Direction

On leaving the Maudsley Hospital on Friday I asked one of the staff for directions to Kent. "Kent as in the Bethlem?" she inquired. "And a bit further" was my vague reply.

It's a wonder that I got out of London, let alone into the Weald and my desired destination, but despite falling off the South Circular a couple of times, I did in the end.

It was hardly the fault of the member of staff. I should have given a clearer idea of where I was aiming for and asked someone who was prepared for the question.

When it comes to treatment and recovery in mental health issues that member of staff is one of the best people in the world to talk to, but still I wonder whether we're asking her the right questions and really have much of a clue where we are going.

Mealtime Conversation

At the conference on Friday one of the clips shown was of mealtime support - a how not to, and how to support someone with a meal. It was interesting, but I would have used more distraction. OK, I'd probably JUST have used distraction.

I reflected on this some time ago when we spent some time with my mother-in-law. She makes a lot of small talk, spends a lot of time discussing the food, judging it, even occasionally talking TO it. It took some getting used to after our "don't mention the war" meals at home. But, unlike my own dear mother whose mealtime conversations can veer towards diets and how much weight so and so has gained/lost, there wasn't anything wrong with any of her talk.

Maybe I'm too avoidant, but we've used quite a bit of distraction and I'm particularly grateful to Charles Collingwood whose portrayal of Brian in The Archers has provided distraction to our family in difficult times for decades (my paranoid elderly aunt Marcella was much easier to deal with when obsessed about his affair with Caroline than with the imaginary affairs of real people).

I'm resolved to broaden the mealtime conversation but will still avoid weight and shape comments, and anything to do with Helen Archer.

Slough

Klara the car does strange things that Fleur never thought of. One of these is to beep when she's running out of petrol. Fleur used just to stop. It's probably an advantage but it is rather worrying. What if that beep means she's about to run out NOW?

So when she beeped on the motorway I decided it wouldn't be safe to wait 23 miles until the next service station and came off at the next junction and ventured into Slough to find a garage. I did eventually find one and it may have taken less petrol to do so than continuing on the 23 miles, but John Betjeman had a point about Slough.

Writers I have known

I first met (to my knowledge anyway) a writer when I was nearly 4 and moved next door but one to "a friendly witch", a children's author some of whose books, I'm pleased to note, are still available  
maybe even from places where they pay their taxes. 

Not all of her books were published. She REALLY wanted to publish a book on evolution with a biblical slant. No one would publish it. The religious publishers didn't like the evolution bit. Scientific publishers didn't want God. No one wanted her lovely whimsical coloured drawings because they were too expensive to reproduce.

Nowadays friends who write books have better access to self-publishing, wizzy graphics, on line media. I think Fy the friendly witch, despite decorating her 1960s house with furnishing from the Victorian era would have embraced the new technologies. Whether she could have got AppleiBooks to work from a Windows machine is another matter.

Home

50 years ago my parents put a deposit down on this house and my future as a Maid of Kent was mapped out. It wasn't some romantic dream on their parts - they had a young family and a limited budget and this was the kind of house that thousands of young families in the 1960s moved into.

We moved out of the village a few years later into the countryside leaving me, a shy girl, even more isolated and unsure as to whether I was from the village or not. I was never local enough to drink in either the White or the Black Horse, or posh enough to drink at the Three Chimneys. I went to school in the nearby town and my friendship group was largely based there, but I retained a small but very close group of friends (some of whom travelled in to town with me for school) at the Church.

I moved away from the village over 30 years ago but despite an occasional spell of boredom or fury haven't moved away from the Church as a whole. 

I went to the village church with my parents today. Most of the congregation were new to me, some were the same people who had been there when I first went to Sunday School. I was made to feel welcome but as a guest rather than one of the regulars, which was fine. However when the stand-in-vicar asked me at the end "and where are you from?" there was only one answer. HERE

Family Based Recuperation

I am enjoying some Family Based Recuperation with my parents and their still rather leisurely internet connection after a fantastic but tiring conference at The Maudsley yesterday. I'm shattered, and unlike the marvellous Miranda I didn't have to give blood.

We're Off To See

not the Wizard of Oz but one of the wizards of the genome, in his fantastical Biomedical Research Centre - really looking forward to learning more about what is going to happen to the samples collected for Charlotte's Helix