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Wednesday 29 August 2012

Support Prince Harry.

If you are on Facebook and haven't joined this particular campaign yet, it brings a smile to your face and gladdens the heart.

So British and a stick in the eye for the prudish, self-righteous media types.  Naked is but a natural state (but loving the green socks!)

Tuesday 28 August 2012

Precisely which bit of normalised nutrition are you finding it difficult to understand?

Normalising nutrition.  Restoring regular eating.

I am calling out one of our UK inpatient units and CAMHS teams today (and grumbling at another for excessive tubeage) and a Primary Care Trust.

Firstly, Huntercombe Maidenhead: Kudos on weight restoration but restoring someone's weight who has anorexia nervosa, purely through using a NG tube alone for 12 weeks - WTF? However, I do understand funding was withdrawn before you felt she was ready.

Croydon PCT - You withdrew the funding for the Huntercombe, despite her only getting nourishment through an NG tube.  Why?   At what point did you think that a 16 year old who "refused to commit" to her recovery was in any way fit to be moved? (See Point and from the NICE Guidelines for Eating Disorders below)  This child was so sick in June that you ended up having to pay to treat her for infections on her self-inflicted wounds and can we talk about the ligatures she had made and the multiple admission for attempted suicide and serious self harm in 2011?.  Did it not occur to you that she was at risk of severe self-harm and suicide and that moving her would be detrimental to her?  What exactly is the cut off point financially for the life of a 16 year old girl?

SLAM Camhs - why do you apply for and get a section for this seriously sick child the first week in August and then decide to plan for her discharge 3 weeks later?  Is she better?  Eating anything?  Drinking anything (including water) other than 1600 cals worth of Fortisip a day?  If so, please share.  How do you expect her parents to cope with her, if a specialist unit is making no headway?  Is she one of those cases that you do not want mucking up your "success" figures?  Is her recovery just not worth it?

Just for you SLAM CAMHS

"4.4.4 Physical management of anorexia nervosa

Anorexia nervosa carries considerable risk of serious physical morbidity. Awareness of the risk, careful monitoring and, where appropriate, close liaison with an experienced physician are important in the management of the physical complications of anorexia nervosa.

Managing weight gain In most patients with anorexia nervosa an average weekly weight gain of 0.5 to 1 kg in inpatient settings and 0.5 kg in outpatient settings should be an aim of treatment. This requires about 3500 to 7000 extra calories a week. (C)" (NICE Guidelines for Eating Disorders)

That is 500 to 1000 calories PER DAY in excess of the RDA for a 16 year old girl of 2,110.  This child should be having a MINIMUM of 2,610 calories per day - that would make your 1,600 calories of fortisip a SEVERE WEIGHT LOSS PROGRAMME.  Just in case you haven't noticed, she has anorexia nervosa......

Just a few quotes from the NICE Guidelines, in case you haven't read them for the PCT - they obviously don't have a legal obligation to follow them but it would be nice to know that someone had read them, understood them and taken a decision on this particular case from a point of knowledge, rather than just assuming that this child was wilfully starving to death as the result of some trauma and she should pull herself together and want to get better.......

Many people with anorexia nervosa find it hard to acknowledge that they have a problem and are ambivalent about change. This contributes to their reluctance to engage with treatment and services. A precondition for any successful psychological treatment is the effective engagement of the patient in the treatment plan. Health care professionals involved in the treatment of anorexia nervosa should take time to build an empathic, supportive and collaborative relationship with patients and, if applicable, their carers. This should be regarded as an essential element of the care offered. Motivation to change may go up and down over the course of treatment and the therapist needs to remain sensitive to this. Special challenges in the treatment of anorexia nervosa include the highly positive value placed by people with anorexia nervosa on some of their symptoms, and their denial of the potentially life-threatening nature of their disorder.

It is common that individuals remain ambivalent about treatment received, particularly those with anorexia nervosa (Brinch et al., 1988, Carnell, 1998). Those who have anorexia nervosa in adolescence appear most likely to recall their treatment (whether inpatient or outpatient) in negative terms. This attitude tends to persist and does not appear to be related to treatment duration or intensity (Brinch et al., 1988; Buston, 2002). The ambivalence characteristic of people with eating disorders in relation to treatment may be an important issue. This ambivalence stems in part from the functional aspects of the disorder itself, and must form part of the backdrop against which views about satisfaction are interpreted. In this respect it might be understandable that some suggest that unlike other psychiatric disorders, patient dissatisfaction will tend to be high in eating disorders (e.g. Swain Campbell et al., 2001).

Anorexia nervosa is associated with an increased mortality (Nielsen, 2001). People at risk of death because of their extreme physical state are likely to be considered – appropriately – for admission to hospital. However, there is unlikely to be systematic evidence to support such practice. Furthermore, people suffering from anorexia nervosa may be at increased risk of self-harm and suicide (Favaro & Santonastaso, 2000). Inpatient treatment or day patient treatment should be considered for people with anorexia nervosa whose disorder has not improved with appropriate outpatient treatment, or for whom there is a significant risk of suicide or severe self-harm. (C) Inpatient treatment should be considered for people with anorexia nervosa whose disorder is associated with high or moderate physical risk. (C) Where inpatient management is required, this should be provided within a reasonable travelling distance to enable the involvement of relatives and carers in treatment, to maintain social and occupational links and to avoid difficulty in transition between primary and secondary care services. This is
particularly important in the treatment of children and adolescents. (C) People with anorexia nervosa requiring inpatient treatment should normally be admitted to a setting that can provide the skilled implementation of refeeding with careful physical monitoring (particularly in the first few days of refeeding) and in combination with psychosocial interventions. (C)* Health care professionals without specialist experience in eating disorders,  or in situations of uncertainty, should consider seeking advice from an appropriate specialist when contemplating a compulsory admission for a patient with anorexia nervosa regardless of the age of the patient. (C) Health care professionals managing patients with anorexia nervosa, especially those with the binge-purging sub-type, should be aware of the increased risk of self-harm and suicide, particularly at times of transition between services or service settings.

I just find this kind of treatment woeful, damaging, life threatening, neglectful and I am thoroughly ASHAMED to be British today.

Saturday 25 August 2012

The Unaffected 93%

So how good am I as an experienced amateur with this whole eating disorder, disordered eating, proper nutrition thing?

It has come crashing home to me that I live in a largely invisible, misunderstood and patronised world.  Having refed my own daughter, helped out for a couple of years on the Around the Dinner Table forum, being an active member of the FEAST UK taskforce, working with Professor Treasure and her team of expert carers, making films about eating disorders, debating with some of the finest patients and parents and interacting via emails and forums with some of the top professionals in the world as well as helping 3 families, from pre-diagnosis to recovery, I am now faced with the obdurate ignorance of my own family.

My mother has anemia.  It comes and goes and the latest bout has resulted in a serious weight loss, lack of cognitive function, inability to eat enough, distress when faced with food, inability to understand how seriously ill she is, hands and feet white due to lack of circulation, sadness, extreme fatigue, difficulty sleeping, chronic abdominal pain on eating.

Now this is a situation that I have come across before and the symptoms are not entirely unfamiliar.  This may or may not be an eating disorder.  What it IS is malnutrition and associated symptoms (see Minnesota Stavation Experiment).

So everything I have learnt over the past three years leads me to believe that she needs to reverse the symptoms of malnutrition - that would involve not just eating enough, but eating a bit more - as she does not have dementia or cancer (she has had more cameras looking at her insides than I have children!).  She does have a very small ulcer, which might be contributing but the more common contributing conditions have been ruled out as a "cause" of her anemia.

So the big question, people.  Should I take any notice of a family member who thinks that this is a choice and she should be allowed to choose not to eat?  Should I put down the fact that she is not eating enough to the fact that she is bored of cooking for herself?  And the concern that has arisen from her deteriorating physical and mental health?  Should that be put down to "small town drama"?

Or should I listen to my children, my husband, my brother in law, the lady in the fruit shop, the man who delivers the newspapers, her friends who see her every day and do something?

(Note: she is taking iron supplements before someone points that one out...)

Tuesday 21 August 2012

Am I supposed to clap?

This is a blog about serial yo yo dieting.  Not a blog about those who lose weight for medical/psychological reasons.  Parents don't cause eating disorders.

"I've lost 10 lbs.  I've been on this marvellous new protein/low carb/grapefruit/wasp-sting extract/shark tooth/stinging nettle soup/ diet."

Cue Oohs and Ahhs.

Call me a cynic but as I get nearer to 50, I have begun to observe that it is the same women (6 or 7 of them) who have lost the same 10-15lbs about 4 times in the last 15 - 20 years.  Each time, they vow that they will keep it off this time and each time, inevitably, they don't.

  1. What were you like to live with when you on this diet?  Were you fun?  Were you happy?  Did you go out and enjoy a coffee with your friends?  Eat fish and chips on the beach with your children? Share a bottle of wine with your husband? Or did you become pinched, irritable, obsessive, grumpy?  Did you spend your time crunching your abs and measuring your seaweed extract, rather than playing with the children, talking with your teenagers, chatting with your husband, living your life?
  2. Last time you lost this same 10 lbs, did you life change immeasurably for the better?  Did you get a new job? A pay rise? Win the lottery? Get a new lover? Realise your life's ambition to swim with Daniel Craig?
  3. No? Do you think your life is going to change this time?  How?
  4. What are you going to do with this particular set of new clothes you have bought to celebrate losing weight?  Charity shop?  Ebay, like last time?  Or are they going to sit, gathering dust and mournfully guilting you every time you open your cupboard?  Are they going to tempt you to slim into them again?
  5. How long does the euphoria last?  A week?  A month?  Is the admiration worth it?  Really?  From a load of superficial acquaintances for losing weight?  Have you nothing better to do with your talents, your education, your interests?
  6. Do you REALLY think that appearances matter that much?
  7. Are you REALLY doing this for yourself?
  8. Do you know what a hamster wheel is?
  9. When are you going to learn?
Diets don't work.  There is science to prove it.

The diet companies are, in the main, owned by the big food companies.  You are buying into a complete snake oil myth by going on a diet.  You are, in fact, a complete mug.

However, what you are also doing is setting up your own children and other children, for a life time of low self-esteem, dissatisfaction and disordered eating.  You are putting your children's and your children's children lives at risk.  At a tender, vulnerable, innocent time of their lives, they are going to look for role models.  In our day, wanting to look like a model in a magazine was almost attainable.  Nowadays, it is not.  There is no pictures that haven't been photoshopped.  What is displayed day after day, week after week, month after month in newspapers, magazines, TV and billboards is NOT REAL.  So your children (boys and girls) are growing up with the expectation that they should look like something that is unattainable.   Literally.  Whether this leads to an eating disorder or not is immaterial.  For the other 95% of children, you are setting them up for a fall.

(Vogue January 2011)                                    Vogue (June 1985)

Your children grow up with the idea that, if they are thin, life will be better, because YOU tell them that.  Directly and indirectly.  Every day.  YOU demonstrate to them time after time that YOU believe that life will be better if you're thinner, when it is evident that nothing changes.  They believe that diets will work, because YOU believe that, despite the evidence to the contrary.  They believe that your unhappiness, your dissatisfaction, your low self-esteem is based entirely on the way YOU look, because that's what YOU believe.  YOU are modelling a life time of misery and superficiality based on physical appearance.

If nothing else persuades you, let this.  This is what you are condemning your children to:

"Repeatedly losing and gaining weight has been linked, in previous studies, to cardiovascular disease, stroke, diabetes and altered immune function"

So you won't get an Oooh or an Ahh from me.  You won't compliments or admiring glances.  NOT because I am jealous (see blog below) or admire your self-control or dedication.  NOT because I wish I could lose 10lbs.  NOT because I work as an advocate for parents of children with eating disorders.  In fact, NOT because of anything to do with eating disorders at all.

I hate to see people being taken for a ride, defrauded, duped, deceived, tricked  time and time again and, quite frankly, after 4 times, this conversation is beginning to feel like a Groundhog Day experience.

Try reframing.  What if you could put the energy and enthusiasm that you expend into measuring your snake oil into something more worth while?  What if only you spent a quarter of your snake oil money on sponsoring a dog, or giving a goat to a village in Africa or buying a round in the pub?  What if you stopped judging yourself on purely physical criteria?  What if you could stop destroying your children's self-esteem?  What if you got off the hamster wheel and pulled the wool from your eyes and stopped believing a clever, manipulative marketing claim?  What if you just stopped trying to please other women who really don't care?  What if you just stopped wasting your life?  

Written for Becky Henry of the Hope Network.  A free pair of Big Girls Pants every time you say it.

Monday 20 August 2012

You can't go out looking like that.......

I have been pondering this overnight and have decided I owe a big debt of gratitude to my friend, Ali.  We met nearly 20 years ago and she is my polar opposite, short(ish), lusciously curvy, curly hair, exotic and ALL woman.  Well, now I have curly hair but until a year ago, I was tall, straight up and down, straight hair and....well....straight.

Ali has a sister and is a girly girl.  She takes care with her appearance, goes to the hairdresser (without extreme resistance - I would rather go to the dentist), wears make up, knows what clothes suit her, dazzles at parties and is loved by everyone for her warm, witty company.  She notices what you are wearing, if you look tired, if you have lost weight, your shoes, your hair cut, your appearance.  She doesn't do this in a critical way.  She just notices.  She is what I now call a physiological person.

I rarely notice much about physical appearance unless it so obvious - loss of a couple of stone (but rarely when people have put on weight - my age group tend to look much better with a few extra pounds!), a radical hair cut from waist length hair to a crop, that sort of thing.  I rarely notice what someone is wearing - I would be hopeless having to give a description to the police if someone (God forbid) went missing - and generally can tell much more about someone's wellbeing by the look in their eyes and their general body language/posture and the tone of the voice.  A sort of psychological/aural person.

So why am I pondering this question?  The Fairy Blogmother's latest blog has bought home a couple of things to me.  Firstly, that subconsciously, I may have a hang up about the amount of food I eat in front of other people because I worry that they will think I am greedy - natch.  Time to let that one go.   Secondly, I am still learning stuff about myself as I near 50 that surprises me.  Thirdly, that perhaps I should make a greater effort to notice what people are looking like physiologically because people like compliments about physical appearance and it appears to soothe them (I HATE it when anyone says anything, however nice, about what I look like!).  Fourthly, I need to make a greater effort with my girls about their physical stuff and my physical stuff. (Note to self, going to the supermarket in shirt with holes in it, trackie bums and crocs is NOT acceptable)

I have never been a great make-up wearer.  I did go through a phase at 16 (which my mother has never let me forget and scarred me for life) and haven't really bothered since.  I have just ignored (not purposefully, more in a total disinterest so it doesn't penetrate the brain) my children's attempts to get me to "tidy myself up" a bit.  I did buy some Touche Eclat foundation last week.  It was expensive and comes in a pretty bottle and I intend to keep it for "best".  This has two outcomes.  It will get used about 3 times a year and go off, long before the bottle is finished or the girls will borrow it and I will go into meltdown in 3 years time because there is none left.  I also bought a foundation brush.  Partly to keep G happy and make her think that, this time, I really was going to start taking care of the way I look but, more importantly, make-up really irritates my skin.  Ergo, if I want to go out looking my "best", my face would look great and my hands like bananas, somewhat spoiling the effect.

So back to Ali.  Why do I owe her this debt of gratitude?  I think she understands that, however hard I try, I am much more interested in working out what makes a person tick by talking to them and observing their reactions and physical cues, than in what they are wearing and where they got their highlights done.  So she gently gives me social cues that I would otherwise miss

"Doesn't T's haircut really suit her, Charl?" "You look so brown.  Have you been on holiday?" etc

This means I don't scare people by launching straight into talking about brains or genetics or what they think of the crisis in the NHS.  I am reminded to ease into a gentler conversation about the weather, or holidays or children.  Perhaps I am autistic (although I score around 10 on the ASD test) or perhaps I have visualisation problems.

Whatever it is, I have decided to not go anywhere social without Ali arc welded to my side.

Unless, it is an eating disorder get together because FEAST parents tend to do physiological as well as psychological.

Friday 17 August 2012



Surely not?

This is why I am going to miss Laura as my mentor.

And she's right.  I should not descend to the level of personal attack, whatever the provocation.  I should hold my head high and just know that sticks and stones may break my bones but words can never hurt me.

And this particular incident is not "hurting" and I feel no need to justify myself or my actions.

I have had an itch for a very long time now and today, it needed scratching.

Did I miss anything?

Having been off the grid for a while, I wondered whether I had missed anything in the very tiny world of on-line eating disorder debate.

The answer seems to be no.

As ably demonstrated by the comments section of this blog, there are those who continue to resist any attempts to see the world from beyond the narrow confines of their particular experience.  If this is the first time you have come across this anonymous "commentator",  I can assure you it is always the same subjective argument, couched in vaguely different language every single time.

Now I have met many patients with wildly differing views from my own on the internet over the past three years.  As a result of listening to them and interacting with them, we have, in some cases, become really good friends in the "real" world.  Others I have failed to agree with on any level but have enjoyed a sparring match, tinged with humour and retired gracefully.  Others still (like T of the Science of Eatings Disorders blog) have totally blown me away and I am scared to interact with them because they are so clever.....

The thing is that we have all changed and broadened and grown as a result of interactions.  We have all tried to find common ground and we all seem to have a purpose: that of furthering the cause for better treatment of eating disorders patients.

Continuing to blame ALL parents, because yours were crappy is, of course, your choice.  Expecting to convince other patients and parents that you are right is becoming less and less of an easy ride, as science and research move on.  Perhaps you could put your hand to better use?  Try getting it to hold out a cotton bud and clean out your ears.

Thursday 16 August 2012

Good Stuff and Bad Stuff.

SO much to catch up on but a quick whirl round the ed world:

Firstly this looks like one of the most exciting projects for 2013.  It is an online library for eating disorders information and I am loving Millie Plotkin for her hard work, her dedication and her ability to assimilate a load of information.  For further information (and if you are on Facebook), please "like" here.

Becky Henry of Hope Network llc went to see Professor Chris Fairburn talk about his transdiagnostic model.  (Major discussion here on the F.E.A.S.T. Facebook page - please note mostly us Brits doing the "dissing") CBT still fills me with rage and I have always loved the "363 pages of pull yourself together" description by one of the cleverest men I know.  People, just because Fairburn got the funding to do the research to produce an evidence base does NOT mean that

a) it works for everyone;
b) six sessions is enough;
c) people should be booted out of the system when it doesn't work for them;
d) it should be used on children - it is for adults; and
e) that you are a failure if it doesn't work

This brings me neatly on to a very distressing email I received via Giant Fossilized Armadillo from a patient in a psych ward in London.  I really hoped the terrible days of abusive treatment were over for mentally ill people but it seems that budget cuts and staff shortages have led to unacceptable "shortcuts".  It was an email that was full of trauma and deep deep sadness, whilst emphasising with pathetic gratitude that abhorrent treatment could have been worse and the staff were doing the "best they can".  If I am allowed to share more, I will but I am OUTRAGED on this patient's behalf.

Stigma against parents continues apace.  This dreadful article made me spit out my tea.  Luckily the Fairy Blogmother managed to put into words everything that I was feeling.  I was Defcon 4 - what a patronising psued article that was.  Pah and Gah.

My friend, C, has started a new blog.  Esme still blows me away with her courage and deep love for her mum.  She contacted me after we had been on TV talking about eating disorders because she wanted her mum to have support.  C and I have remained giggly friends every since and my admiration for Esme and her love for her mother continues to this day.

The "blow me away" summer holiday blog has to go to the Science of EDs.  The good news/cockle warming blog post was this one.  The new discovery of the summer blog is this one - thanks to Miranda.

The photo of the week -

Long Time, No Blog

It has been hectic here and I confess to being glued to the Olympics.  I am now bereft because there really is nothing on the telly.  Hence, why I keep watching this.

adidas | Team GB Don't Stop Me Now from Philip Bloom on Vimeo.

I have also been busy taking over as "Social Co-ordinator" for the Around the Dinner Table Coffee Breaks forums.  This means arranging parties all over the world for parents to meet up - my kind of thing.  I have started a blog to run alongside for news and information.

I also seem to have driven a million miles, picking up and dropping off at airports - children to Italy, Livs coming in from Australia, children back from Italy, Mum to Italy - and doing mountains of washing.

But the real reason I haven't been blogging is I have been slightly struck dumb by the Fairy Blogmother.  I knew she was leaving.  I have known for some time but in the back of my mind, I hoped she would change her mind and not be such a daft moo.  But the deed is done and I am trying to readjust to advocacy without a gentle guiding hand and it is making me second guess my every move.

But I guess the Team GB video applies to her now as well.  I am not stopping her but it doesn't mean I have to clap and cheer......

Sunday 5 August 2012

What every parent should know

The best video I have seen so far.  I want every parent to watch this on diagnosis

Friday 3 August 2012

Friday Video

My favourite moment from the Olympics so far - many many congratulation to Helen Glover and Heather Stanning.