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Thursday 20 December 2012

Living with diabetes

As an adolescent, you develop diabetes.  Everyone misses the signs and symptoms and you don't get the right treatment.  You are still living with it for 20 odd years later.

You chose, as your career, to help other people with diabetes.  You advise them on a range of aspects of diabetes - from their diet and exercise to the mental stresses and strains that go along with getting diabetes and supporting them with useful strategies to get the right kind of help in curing/dealing with living with diabetes, so they don't end up as unhappy as you are.

You didn't choose to get diabetes and it is not your fault that 20 years on, no one has bothered to come up with the right treatment for your diabetes.

In fact, you are a positive saint.

How would you then feel if your colleagues who work alongside you in the diabetes clinic give you are hard time for not "choosing" to get better?

Unacceptable?  Totally.

Why do people in the medical profession feel they can say this sort of thing to people with eating disorders?

Eating disorders are not a choice.

Sunday 25 November 2012

Calling out the idiots- smug ignorance from so-called professionals

Below is a list of quotes from clinicians.  Some have been named.  Some have not.

In terms of how you can support as Parents, the challenge is that we ask Parents to back off completely in terms of ‘getting her back to eating normally’. As this is an illness where a strong function is around control, it is important that the sufferer does not feel controlled or coerced into eating by well meaning friends or family. We do run a support group which would be of great benefit in terms of being able to talk to other Parents who have been in your situation & come out the other end. It is on alternate Tuesdays here from 7-8pm and the next one is running next week. It is normal to feel anxious & normal to want to do anything you can to get Sophia to have a healthy relationship with food but our experience is that the sufferer has to address this herself in therapy. We encourage families to avoid food related conversations & to encourage relaxation & fun given the fact that those who experience eating disorders are academically driven with perfectionist tendencies who also believe that they are undeserving of any form of pleasure or enjoyment. I hope this has been of some use, there are further resources available via The Maudsley/Institute of psychiatry Website that other Parents have reported to be helpful and they are also highly evidenced. Or if you Google Janet Treasure or Ulrike Schmitt you will find a wealth of information
(A well-know West Country ED service, UK)

From our Canadian paediatrician: "she will have anorexia the rest of her life and she needs control over her food" "refeeding is really hard to do, probably too hard" sigh-just remembering this makes me so sad-we were in early stages and feeling so vulnerable and had read about maudsley, fbt and recovery being possible Now I am just spitting mad

from NEDIC website: National Eating Disorders Information Centre (Canada's national ED website sponsored through University Health Network)
From Overview: "There are many different kinds of food and weight preoccupations, including eating disorders. This section aims at de-mystifying issues relating to dieting, food, weight concerns, shape concerns, self-esteem and body image. To do so, we will be looking at those influences that most contribute to how we feel about our selves and our bodies, and that ultimately can help us make healthier choices for more enjoyable lives."

From Know the Facts: "The first step in any recovery process is in first realizing that our food- and weight-related behaviours are hurting us, rather than helping us. Once that realization has been made, there are a variety of ways in which help can be found or offered to those suffering from an eating disorder. Family members and friends may also benefit from information and help."

from my GPs notes re: FBT "seems to be dealing with anorexia as an illness and not result of family issues necessarily ( sounds like treatment like EtOh abuse- separate from person)"

From a PhD, ivy league-educated psychologist to me: "What do you think is in it for YOU with your daughter having anorexia nervosa?", insinuating that my daughter's illness had some benefit for me, that I was causing and perpetuating my daughter's illness.

"Little girls get skinny". By my daughter's pediatrician

"Why did you wait so long?" (Asked by a psychiatrist -- it was completely the wrong thing to say to parents who had been desperately searching for help for 6 weeks, and whose daughter had only shown signs of illness for a few months. It sounds relatively innocuous, but this is one that still smarts for me, 2.5 years later.)

"You need to stop reading so much. It's making you anxious."

"It's about control. Give her some more independence, and she'll come around."

To my daughter, from professionals:

"Don't worry, it's mostly water." (a psychiatrist who told my daughter her weight and witnessed her falling apart -- we had trouble getting her to drink any water for a few weeks after that)

"Normal weight is 100 pounds for 5 feet and 5 pounds for every inch over that." (a nurse at the hospital -- she is still fixated on that as a normal weight)

"I don't like water either. That's why I drink vitamin water." (a highly recommended therapist we were trying out while my daughter was already avoiding water -- we didn't go back)

"If you Parents divorced, your D's anorexia would most likely get better" giving the message that parents were causing this illness rather than she set her weight too low.

"Oh, (my D's name), you are just having a temper tantrum to get your parents' attention" when she was really suffering from ED rages and PTSD symptoms from traumas. The insinuation, of course, was that she didn't have our attention and support she needed.

"Your D is stable in weight and she needs to come back to college so she can learn how to adjust fall semester and be like other college students" My D was 25 pounds under her accurate target weight range.

The last psychologist (before we found FEAST and an FBT) who was trying to have my D "own her recovery" and have no parental input in meal planning and my D quickly became so ill with rapid weight loss and suicidal thoughts. My D's ED was raging and the psychologist looked at me and asked "Do you know why your D is so angry at you?"

These from a HIGHLY recommended T we found on the Maudsley Parent's website (I just checked, while zie is still in practice, zie no longer lists there):

- Maudsley only works with "younger" kids - d was 16.
- Don't be the food police
- This is a power struggle
- Relegated me (step parent) to "chauffeur and cheerleader"; I was NOT EVER to be involved with D at meal
- Told me to stop reading and stop coming to this forum b/c THAT was what was making me anxious (not our D's deteriorating physical state, oh heavens no)
- Tried to "renegotiate" what "kind of parents" dh and I were going to be to our d.

Cherry on the icing on top of this s#@t-cake? Zie dropped us from her practice when D started self-harming. Zie dropped D b/c D was "too unstable to be cared for on an outpatient basis" and then had to be practically arm-wrestled into writing a recommendation for D to be in residential services.

"We don't like to share weights with our parents because they get obsessed with the numbers."
You try feeding an irrational angry person six times a day, lady, and see if you get interested in those numbers!

"We decide if the parents can handle that information."
...because we secretly think we are sooo much smarter than parents.

"We like to bring the weight up slowly (gesture of hands rising together) so the psychological side and the physical side rise at the same rate."
Doesn't work like that though, and the family is burning out.

"We like these kids to gain weight slowly so that it goes on as muscle instead of fat."
These kids are different than normal human beings who have starved somehow.

"We like to set the target weight low because these kids are terrified of gaining weight."

"Above all, preserve the relationship."
I think that was the most damaging quote ever. It implied that I must be doing something wrong because my refeeding her was driving a giant wedge between us. How was I supposed to preserve the relationship? By not feeding her?

"She says she doesn't need any help, so we'll discharge her." to the father of a 16 year old who takes blades to herself regularly, can barely manage 80% school, has no social life, wears the same outfit and hairstyle every. single. day, ditches lunch whenever she gets low.....
Last week, highest-tier CAMHS psychologist & psychiatrist.

The nurse who was trying to get blood out of my D's bony little arm to check her WBC and potassium levels, then weighed her - 7 1/2 stone at 5'7 and told her she' was nice and tall and would make a lovely model. I still don't know how I didn't physically shake her and tell her what a moron she was.

Said by a psychologist who specializes in ED, while D was inpatient and he was in charrge of her care, during a period of 2 weeks when she was mostly not eating and losing weight rapidly, and she was being assigned to eat her meals alone ina room without even a staffperson to sit with her, and we were not allowed to provide meal support - "Yes, she understands that eating is optional here, but we are continuing to work with her using behavioral protocols and incentives."

"She needs more salt."

She'd been fainting, stopped growing, lost weight, and they could barely find a vein to do a blood draw

To be added to, for sure.  Please feel free to send me your additions.  We might even need a new blog for this one.

Thursday 22 November 2012

Is anorexia a choice?

A conversation on the F.E.A.S.T. Facebook page following this post.

I dont know if any of you caught the BBC new this morning but I heard the tail end of a plan to have body image lessons at school- this led me to look it up on the BBC website to see what it was all about- there are a couple of articles on it, and I found this one, if you scroll down the article it says about wiping out eating disorders.... I read a lot of view on here regarding body image and ED's and wondered what people thought of the Governments comments in this report?

Yet again, nobody says it better than Betsy:

  • Betsy Baldo In my experience during school, body image stuff as well as talking about nutrition and whatnot actually led to girls talking about and idolizing eating disorders. Girls would complain after health class about how fat they were and not eat lunch that day and swear they were going on a diet and promised they would never eat chocolate again, they would say things like "Oh my god those girls those girls with anorexia are so lucky, I want to be like that, but it's just so hard because I love eating so much..." and on and on. I would just sit there thinking about how totally useless, counterproductive and ridiculous this curriculum was. It just brings body image issues to the forefront of everyone's mind and spreads ED myths like wildfire. THANK GOD I AM DONE WITH HIGH SCHOOL.
    21 hours ago · Unlike · 6
  • Charlotte Bevan Betsy Baldo I am going to have a book of your sayings and posts. Just saying....
    21 hours ago · Like · 4
  • Betsy Baldo 'If my brain was normal, I would find a better way to express my teenage angst than starving myself to death.' A common-sense approach to dealing with Eating Disorders with a healthy dose of jaded sarcasm. By Charlotte Bevan, from the mind of Betsy Baldo.
    20 hours ago · Edited · Unlike · 6
  • (LE) wait, you mean i could have just dyed my hair pink and rebelled against curfew rather than nearly starved myself to death and become institutionalized?? IF ONLY SOMEONE HAD TOLD ME! ;)
    13 hours ago · Unlike · 4
  • Betsy Baldo Exactly LE!!! We also could have rocked some tattoos, a tongue ring, gotten pregnant by a no-good 22 year old boyfriend, gone goth, stolen a car, become obsessed with skateboarding and gotten all F's in school, and/or smoked lots and lots and lots of weed. But no...we just had to pick a life threatening disease!!!

Tuesday 20 November 2012

Running in the family

Dear Mum and Dad,

I feel that Thursday was the important, first step that is needed towards helping E get better with her eating. I hope that you will both be able to attend next week’s feedback meeting to discuss where to go from here and to gain an understanding of what the specialist team believe is her diagnosis and hear what the suggested treatment options are. I feel it is important that you are both there to learn the right solutions to help E overcome her problems and ultimately to learn what the diagnosis is and what the recovery programme will involve.

I feel it will give you the best possible opportunity to discuss how to help E gain weight, eat “normally” and lead a more “normal”, healthy and active life – at home and at school.

The responsibility of getting E better doesn’t fall just on mum but from my own experience, I think that perhaps what she needs is a big team – which includes all her family, the specialist team at GOSH and her school. I know what was (and still is) helpful and reassuring for me was to have a team of support – which includes my family, friends and the experts.

Knowing E, knowing you and knowing quite a bit about what she is going through, it is important that whatever diagnosis is made is taken seriously and I hope you will feel reassured that the hospital will know what the best route will be, that you would give every possible consideration to the options available, which may include possibly going into hospital. In the short term, this may seem quite harsh but it will – I know – benefit her in the long term, in the same way that it did for me. In my case, being in the Woking Priory might have seemed disruptive, difficult and unsettling but it gave me the tools to lead a normal and happy life. Whatever treatment the experts at Great Ormond Street suggest will give her the tools to eat and help her become fit and healthy. Obviously E’s and my situation are different not least because we are very different ages but what is the same is that she needs the tools that will help her learn to eat more normally – in the same way that I was given tools to be calm, think rationally, and become more self aware.

From my own experience and perspective, I don’t think this can be done at home because I don’t feel that any of us have the essential knowledge and tools at home to be able to help her, and I also believe that this is not something that we can brush under the carpet – because of the implications that this may have on her in the long term and in later life.

I feel that although the team at GOSH don’t know E best – they do know the problem best and know how to make things better. The expert of Ella (you) and the expert of E’s illness (GOSH) both need to come together in order to help her. And I am sure that whatever treatment is suggested, you will have an important role to play.

I do feel that once it is known what is wrong with Ella and causing her these difficulties with eating, it is important that the hospital’s treatment plan is pursued, because it will make her better, which in turn will make things so much easier at home. I think that both you and E will be so much happier and life will be so much easier once all these hurdles are overcome.

I feel we are so lucky to have been given this chance to meet these top experts who are renown for helping children with problems surrounding food and eating.

I hope that you can trust these specialists in eating disorders because even though you know Ella better than anyone, they will have dealt with other children, who have similar problems – which gives hope to the fact that she can get better too. I also think it is important that these problems with her eating are dealt with now rather than waiting for them to get worse – it has already been left late enough.

Whether or not you want my opinion, I want you to know that I think Ella’s situation is very serious and must not be ignored. If I was in E’s shoes, it would be important for me that both my parents were able to learn and understand what I am going through and that they were able to find the best possible help in order for me to get better.

I believe that although when we look at E and see a smiling, chirpy, funny and quite frankly FABULOUS child, I strongly feel that there must be things going on for her under the surface that can’t be seen but are causing her to not eat properly – and perhaps even she can’t explain what these are. But with specialist help through vital re-feeding and other things like art therapy for example, an insight can be gained as to why she has these eating problems and how best to over come it.

I believe we all want the same things – for E to be happy, healthy and strong enough to be able to live without a peg. I have absolute faith that these things are all possible - I hope you understand that I am only writing this letter to you because I love E more than anything else in the world and I want her to be well. And nobody doubts for a second that you want her to be well and happy too.

I also hope you know that nobody is blaming you for any of this. It is not your fault that E has these problems. It’s a biologically based mental illness – E didn’t choose it and you haven’t caused it.

I love you lots


Thursday 15 November 2012

The Conference

ECHO FEAST and Maudsley Carers Event
Bestwood Lodge Hotel
Bestwood Lodge
Bestwood Lodge Country Park
Nottingham NG5 8NE
United Kingdom

Driving Directions

Friday November 23, 2012 at 8:30 AM CET
Saturday November 24, 2012 at 4:00 PM CET
Add to my calendar
Dear Charlotte, 

Friday Programme 23rd November 2012
8.45 Introduction and housekeeping Charlotte Bevan
"F.E.A.S.T. and what we do" Fiona Bromelow

9 - 10.45 Keynote Speech Professor Janet Treasure

10:45-11:15 Coffee

11.15 Plenary
 "Boys Get Anorexia Too" Jenny Langley
"The ECHO Project" Dr Pamela McDonald
"Professionals, Carers and the Internet" Dr Rachel Polonskyand Dr Maria Finnis

12:30 Q and A Session with the morning's speakers

1- 1.45 Lunch

1.45 Plenary
"First Steps Derby" Danielle Sinclair
"Freed Beeches" Yvonne Broughton
"Beat, the UK's leading Eating Disorders Charity" Susan Ringwood

3:00- 3:30 Tea

3.30 - 5.30 "Skills Based Learning for Carers" a presentation for professionals. Gill Todd
Saturday Programme 24th November 2012

8.45 Housekeeping and Introductions Charlotte Bevan

9.00 - 10.15
B-EAT our work with carers Susan Ringwood
Succeed Karine Berthou 15 minutes

10.30-11 Coffee

11.00 - 12:30
C&M Films Charlotte Bevan 10 minutes
Practical Skills for Carers, Workshop, Part One  Gill Todd

12.30 - 1.30 Lunch

1.30 - 3.30 Practical Skills for Carers, Workshop, Part Two  Gill Todd 
Register Now!
I can't make it
Charlotte Bevan

Thursday 8 November 2012

A blog of pain

A.K.A. Naff off Hilde - you were wrong.

In her early theoretical work, Hilde Bruch argued that anorexia nervosa (AN) is caused by the failure to develop a diverse set of identities or self-definitions.(1, 2) Highly controlling and perfectionistic parenting was believed to limit the child's opportunities to function autonomously and to interfere with development of a clear and richly elaborated self. Bruch suggested that the adolescent turns to body weight as a viable source of self-definition and as a means of compensating for the lack of a clear identity and for associated feelings of powerlessness and incompetence. From this perspective, the adolescent's fixation on body weight and exaggerated desire to be thin are a maladaptive way of coping with identity deficits and of striving for a sense of self-definition, competence, and control.

Disturbance in the Self: A Source of Eating Disorders
Reprinted from Eating Disorders Review
By Karen Farchaus Stein, PhD, RN and Linda Nyquist, PhD
January/February 2001 Volume 12, Number 1

So I have had to have my mother admitted to hospital.  A very nice, cheery cottage hospital in the town where she lives.  She has heaps of visitors and flowers and cards, knows all the gossip and is allowed out for excursions with friends.  The nutritionist has rung and talked and suggested.  The nursing staff have acknowledged the MARSIPAN report (I am not sure they have read it cover to cover but it is very long) and placed the Restoring Regular Eating Plan and the Guide to Medical Risk Assessment in her notes.  Her notes read Anorexia and, as her GP laughingly noted, she is the only person he knows who has come in to be "fattened up" on NHS food.

I tried very hard to do FBT here, at home with her but failed dismally.  The Fairy Blogmother hit the nail on the head when she said  "re-feeding an elderly patient has no roadmap and doesn't have lifetime parenting effects". 

There is a very different relationship when refeeding one's child when compared to refeeding one's parent. As two very wise girls pointed out to me last night, there is a natural feeling somewhere that believes that your parents may be right and it is instinctive to follow their rules. For parents, to believe that their children might be right and to blindly follow their rules, goes against the natural order.  To enforce any kind of consequences for not eating upon one's parent is...well.....absurd really.

Do I blame myself? Yes. Do I think that she will be "cured" before her aging organs give out? Probably not - a sort of hope over experience wishes she does. Do I expect anyone outside of my immediate family and my circle of internet eating disorder friends to even begin to understand? Not really.

The scary thing is the manifestation of an eating disorder "personna" in its cruelest form is there. The personna that tries to alienate those who can help most, is definitely present, correct and fully functioning.

As for dear old Hilde's arguments: sorry, sweetie, this is no teenager with controlling parents who has not been fully able to develop a clear and richly elaborate self. Nor is it an identity crisis or a self-definition problem. It's an eating disorder that doesn't do tick box diagnostic criteria, international boundaries or only affect middle class white teenagers.

It started as an energy imbalance. I hope it doesn't end that way.

Monday 22 October 2012

The perfect team?

So you go to the doctor with a patient you are convinced has some kind of eating disorder.  You sit down and express your concerns.   You mention FAED and ARFID and he look them up on the computer.  The doctor turns to the patient, asks lots of pertinent questions and then looks at you.

"Which specialist would you recommend?"

"Professor Treasure at the Maudsley"

"I will write a referral letter today" (which he does!).

"Anything else you are concerned about?"

"The terrible eczema which responded very well to steroids last time.  It is making her very uncomfortable and is not helping her sleeping."

"A short course of steroids then?  Why not?"

There follows a "discussion" on what long term steroid use problems there are and side effects and warnings.

Forward three week and the appointment at the Maudsley comes through for next Wednesday.  The patient has finished her short course of steroids, which helped her appetite and her eating.  A "bit of a blip" at a bridge session and she returns home.  Within half an hour, the nurse from the surgery has popped round, the doctor has been on the phone and the pharmacist has popped round with a new prescription for steroids filled and ready to go.

You have a bit of a heart-stopping phone call, grind teeth and then gather your thoughts.

You email the doctor suggesting that the blood test he has scheduled for tomorrow incorporate this.  You also suggest that the patient may not need to have yet another round of tests and scans that have so far proved negative over the last six months until we know whether this is physical or psychological.

He agrees and says that he will hold off on any more physical tests (except the blood test) until the patient has seen Professor Treasure, unless it becomes an emergency.

Dr Chris Castle, Cathy (aka Angel Nurse) and Mr Patel, Southwold, saviours to my mother, I salute you.  You are the perfect example of what the NHS can and should  do.  Thank you.

Friday 19 October 2012

Modelling Effective Parenting

I have had to "edit" the film in order for it to be short enough for the F.E.A.S.T. film competition.  It felt like extracting fingernails but it is done.
For the longer version and all our other C&M Films, please visit this You Tube page.

Thursday 18 October 2012

Please sign

It is important that the mentally ill inpatients are protected.  Please join Rethink in this campaign.

Recovery Tour

Livvy (on the left) and Camille (on the right) have been staying with us for the past couple of days.  As you can see they are wussy Australians and need thick down skiing coats (and thick socks!) to walk the dogs on a mild (12 degrees) Autumn day.

Livvy is the daughter of an ATDT mother and has come to broaden her horizons in England for a few months.  She is off to Canada to teach skiing in about 5 weeks time and I shall miss her madly.  She has, however, been mighty impressed by the English ATDT mums (She and Camille are staying with Rachel in Cambridge tonight) and is filled with the hope that she can catch a few more beds in Seattle and down the west coast, hopefully ending up with M in Texas.

For anyone who thinks that eating disorders are a choice, incurable or we need to put palliative care protocols in place, just look at Livvy and understand the power of what parents can do and what recovery looks like - a beautiful, clever, brilliant young woman.

Tuesday 16 October 2012

Palliative Care

A question from my friend, Marcella.

"I have been asked to comment on the feeling of carers about palliative care and "treatment resistant anorexia". My first thought is that Anorexia Nervosa is always pretty treatment resistant but that that doesn't mean that those who suffer from it are beyond hope and actually want to suffer so, far from it. The question is how best to get round the perniciousness of the illness and treat the person. Early intervention is the holy grail, much lauded and rightly encouraged, but what about those who don't get it, or for whom it doesn't work. I would welcome your thoughts both on the question of palliative care, and on the more pertinent question (in my opinion) of how to avoid people needing it."

Broken down as follows:

What would you want clinicians to take into account if someone is [openly] refusing to accept treatment (presumably before imposing treatment)

I would be very cautious about "refusal" to accept treatment. We really have to discuss mental capacity here

"Individuals may have an inherent physical condition which prevents them from achieving the normal levels of performance expected from persons of comparable age, or their inability to match current levels of performance may be caused by contracting an illness. Whatever the cause, if the resulting condition is such that individuals cannot care for themselves, or may act in ways that are against their interests, those persons are vulnerable through dependency and require the protection of the state against the risks of abuse or exploitation. Hence, any agreements that were made are voidable, and a court may declare that person a ward of the state and grant power of attorney to an appointed legal guardian.

In England and Wales, this is a specific function of the Court of Protection, and all matters concerning persons who have lost, or expect soon to lose, mental capacity are regulated under theMental Capacity Act 2005. This makes provision for lasting powers of attorney under which decisions about the health, welfare and financial assets of a person who has lost capacity may be dealt with in that person's interests."

We also have to discuss alexithymia 

"Alexithymia is considered to be a personality trait that places individuals at risk for other medical and psychiatric disorders while reducing the likelihood that these individuals will respond to conventional treatments for the other conditions.[3] Alexithymia is not classified as a mental disorder in the DSM-IV. It is a dimensional personality trait that varies in severity from person to person.

Alexithymia is defined by:[6]
difficulty identifying feelings and distinguishing between feelings and the bodily sensations of emotional arousal
difficulty describing feelings to other people
constricted imaginal processes, as evidenced by a scarcity of fantasies
a stimulus-bound, externally oriented cognitive style."

and anosognosia

"Anosognosia is a condition in which a person who suffers disability seems unaware of the existence of his or her disability. Unlikedenial, which is a psychological defence mechanism, anosognosia is rooted in physiology (for example, damage to the frontal or parietal lobe due to illness and disease). This may include unawareness of quite dramatic impairments, such as blindness or paralysis"

We need to explore at what precise level of malnutrition an INDIVIDUAL (as it differs from person to person) is still rational, in the legal sense of the word and capable of making a decision about their welfare. Many many eating disorder patients are sectioned under the Mental Health Act. Why do some patients get sectioned and are deemed "at risk", whilst others, who in the cases we are talking about, are deemed rational and capable of making a decision? Somebody, somewhere has to make their mind up about whether anorexia is a mental illness or whether it is a life-style choice. This constant shilly-shallying around the issue and the blurring of the lines about what anorexia nervosa actually IS and whether someone who is very malnourised is "in their right mind" does nothing to help the patient, the clinician or the parent/carer.

I would want a clinician to take into account that often someone with anorexia can outargue God and appears very "rational". However severe and prolonged malnutrition affects cognitive function.  The patient's wishes, whilst appearing valid, may not be anything of the sort, due to the long term effects of malnutrition on brain function (see Janet Treasure et al)

What you would consider treatment resistant anorexia to be?

A failure on behalf of the treatment team.

How family members and carers can best be involved?

A quote from Gill Todd: (thanks, Marcella)

"From my experience of working with carers the ideal service needs to be easy to access and quick to respond and have a clear communication system that both informs and supports all those who are caring for the person in any capacity. Services need to understand the stress caused because of living with someone who you are afraid may die".

My list goes on and on: support, hope, peer-to-peer interaction, kindness, exoneration from blame, clear explanation of anorexia is AND isn't, etc etc etc.

Whether it is acceptable to offer someone palliative care, keeping an individual pain free rather than offering active treatment for their condition?

In my opinion, anorexia nervosa is treatable. If someone has been neglected to the point that they are needing palliative care, they have been let down.

There are others who believe this is a treatable illness.  There has been a lot of comments on this paper.  Who am I to argue with the President of the AED?

Death is a preventable outcome of eating disorders and may be secondary to lack of awareness, knowledge or timely treatment; yet it would seem that paediatric medical and mental health services are sometimes ill-equipped to meet the challenges of young patients presenting with eating disorders, especially acutely. 50% of children less than 13- years old are hospitalized early in their illness(2) and numbers of children under 14 hospitalized for eating disorders has risen over the past 10 years(HES data). A recent survey of on-call paediatric registrars in hospitals in England and Wales revealed poor knowledge of the acute management of children with eating disorders(submitted for publication). Most were unaware of the frequent cardiovascular complications and unable to outline the complications of re-feeding syndrome.
  • Lee D HudsonPaediatrician
  • Dasha E Nicholls, Andrew Kennedy, Debra K Katzman
UCL Institute of Child Health

Or put another way, The Fairy Blogmother's answer.

Sunday 14 October 2012

Helping Prof. T!

I have been asked by Professor Treasure to get some patient and carer endorsements for "training and support of carers = better long term outcomes in anorexia nervosa". I know this is anecdotal but please can you all help?

Thursday 11 October 2012

Wego Awards

The Carrie Arnold Code.

Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders"Decoding Anorexia is the first and only book to explain anorexia nervosa from a biological point of view. Its clear, user-friendly descriptions of the genetics and neuroscience behind the disorder is paired with first person descriptions and personal narratives of what biological differences mean to sufferers. Author Carrie Arnold, a trained scientist, science writer, and past sufferer of anorexia, speaks with clinicians, researchers, parents, other family members, and sufferers about the factors that make one vulnerable to anorexia, the neurochemistry behind the call of starvation, and why it’s so hard to leave anorexia behind."

I have been networking on Linked In recently.  It was an exercise to promote the F.E.A.S.T conferences in 3 continents but joining Linked In is lethal for a connections enthusiast like me.

One of the most interesting discussions (for me) has been a very long thread in a professional psychology network, asking for recommendations for self-help books.  I launched quite early with HYTBAED and SBL and shall be going back on to recommend the very excellent new Decoding Anorexia by Carrie Arnold, which arrived yesterday and I finished reading this morning.  (What amazed me is the amount of people who recommended their own work - quite a shock for a Brit - really very un-Downton)

There are so many good things to say about Carrie's book.  It is not in the tiniest bit dry or patronising and contains many witty comments and analogies.  I ADORED her brain chapter and shall never again be afraid to look at diagrams of the brain, now she has explained the parts and functions in a warm and amusing way.

What struck me most, in this well-researched and factual book, was how much I already knew but was completely unable to explain to anyone.  I shall be carry it around in my handbag and bore people to death by reading out long extracts at the drop of a hat.

I hope anyone involved with eating disorders will buy, beg or borrow a copy of this book and I look forward to watching lightbulbs going on all over the world as people realise:

"This is not your fault"

For Sophie -

Wednesday 3 October 2012

Green eyes and empty nests:


"Do you miss me?"

There is nothing more disappointing than someone, to whom you have been exceptionally close, managing to Keep Calm and Carry On.  After an irreversible change in any close relationship, it always hurts when the "significant other" gets on with their life, without your advice, and doesn't end up wrecked, without you as their rudder.

It is FINE for you to move on, but not for the other person.  Don't they get how much it irritates that they have coped well (and may be even better?) without you?  Don't they understand that is OK for you to move on without them, but that your ego is crushed that they can succeed without you?

In these days of social media and instant communication, it is only too easy to breathlessly watch from afar, as they appear to soar and to spend hours ripping out metaphorical fingernails when comparing your smaller and more mundane experiences.

However, it is worth reminding yourself that they, too, may be feeling a little sore round the fingertips that you have not yet "died of love" for them?

Friday 28 September 2012

Nobody does it better

There is little point trying to paraphrase  Carrie Arnold.  Her article for Slate  is pretty self-explanatory and Laura Collins has already covered the arguments.  Meanwhile, I am toe tapping in anticipation of the arrive of Carrie's new book.

Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders

Just the editorial reviewers (let alone the reviews) are enough to plan two days off just to read it.

“How can eating enough seem so simple and yet be so difficult for some people? This book simplifies the difficult enigma of eating disorders by interweaving up to the minute evidence with experience. A resource for both the professional and lay audience.” - Professor Janet Treasure, PhD, FRCP, FRCPsych, Kings College and South London and Maudsley Hospital, London

“Finding out that anorexia is a biologically-based mental illness is liberating. It sets you free to develop skills and embrace life. Decoding Anorexia explains why in a language that we can all understand.” - June Alexander, Anorexia survivor, Australia; Author, A Girl Called Tim; My Kid is Back; and A Collaborative Approach to Eating Disorders

“With turtles, deer, dandelions and orchids, Carrie Arnold deftly weaves her own experience of anorexia with the best biological science. This powerful and compelling book will help anyone gain a better understanding of a most complex, challenging and too often deadly illness.” - Susan Ringwood, Chief Executive, Beat, United Kingdom

“Carrie Arnold has done an outstanding job of translating complex and difficult research findings into understandable concepts. This book should be an essential guide for individuals with eating disorders and their families who would like to know more about how brain processes contribute to eating disorder symptoms.” - Walter Kaye MD, Professor of Psychiatry and Director, University of California, San Diego, Eating Disorder Research and Treatment Program, USA

Or as my friend, B, puts it

"No, I am not a perfectionist with control issues who is overly influenced by thin models in the media dealing with overbearing parents you douchebag. I have a $%#@#$%^&&%$#$%$#$ing biological/neurological/somecrapgoin'on disorder"