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Wednesday, 30 November 2011

Faint whiff of polish....

So I am off to London tomorrow afternoon, in readiness for National Carers Research Conference at the Maudsley on Friday.  Marcella and I are on at 3 pm so we thought we ought to Skype about what we were going to do/say.  We are showing the Modelling Effective Parenting video which gives us both PTS, so expect a load of tears.  We are going to be well supported by our ATDT team.

I have packed 200 AED Eating Disorder leaflets, spare pare of knickers, another spare pair of knickers, socks, vests, PJ's, clean shirt, face stuff, toothpaste, Marcella's F.E.A.S.T. T-shirt and spare shoes.  Mum is coming to look after dogs, children and HWISO.  I've made her bed, written her instructions and told the children I will ring Father Christmas if they do not behave like perfect angels for Granny.  I tried telling HWISO that as well but he wasn't impressed - still sulking about the whole Kindle thing.

So I am organised, packed, listed and ready.  Just one slight word of warning to those coming.  I have managed to wash my jeans with the dusters so will smell faintly of beeswax.

Tuesday, 29 November 2011

Surprise Surprise

I picked up the post from the post box and brought it in.

"There's a parcel from Amazon for you" I said to HWISO (He who is sometimes obeyed).

"I wonder what that is" he said teasingly, with a twinkle in his eye.

"I've no idea", I said kindly

He then went too far.

"Perhaps it's some sexy underwear for you" (My idea of complete hell and firmly written down as grounds for divorce when we got married)

"It says Kindle on the side" I said.

Causes - Is it your fault, Mum? Or Kate Moss'?

When I found a lump in my right breast in June, the wonderful NHS machine swung into action with well-oiled precision.  I had a lumpectomy, had endless meetings, had my chemotherapy and radiotherapy booked, was given endless leaflets, pamphlets and help line numbers.

At no point did anyone ask my mother if I had had a difficult birth.  Or my husband what our sex life was like.  Or what I thought had caused my cancer.  No one investigated my family dynamics, asked about my childhood or whether I had been sexually abused.

Now those good people in cancer care are doing sterling work in finding out what causes cancer and are are very helpful with public information about what to do to try and lessen your chances of getting it.  Simultaneously, they are using evidence based treatment to cure the cancer.   They manage to do all this without once inferring that it was my fault, my mother's fault, Kate Moss' fault or that I somehow willed myself to get cancer because I needed attention.

Why the heck are we fanny-arsing around with tripe like this?  Bless Sarah Ravin for her excellent refutation of this widely spurious article and to Laura (of course!) for bringing it to my attention.

NICE Guidelines

For those of you not familiar with NICE (National Institute for Clinical Excellence), here is a description of what they do:

NICE quality standards are a set of specific, concise statements and associated measures. They set out aspirational, but achievable, markers of high-quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions.
Derived from the best available evidence such as NICE guidance and other evidence sources accredited byNHS Evidence, they are developed independently by NICE, in collaboration with NHS and social care professionals, their partners and service users, and address three dimensions of quality: clinical effectiveness, patient safety and patient experience.
NICE quality standards are central to supporting the Government's vision for an NHS focussed on delivering the best possible outcomes for patients, as detailed in the 2010 NHS White Paper Equity and Excellence - Liberating the NHS.
Quality standards will be reflected in the new Commissioning Outcomes Framework and will inform payment mechanisms and incentive schemes such as the Quality and Outcomes Framework (QOF) and Commissioning for Quality and Innovation (CQUIN) Payment Framework.
NICE quality standards enable:
  • Health and social care professionals to make decisions about care based on the latest evidence and best practice.
  • Patients and carers to understand what service they should expect from their health and social care provider.
  • Service providers to quickly and easily examine the clinical performance of their organisation and assess the standards of care they provide
  • Commissioners to be confident that the services they are purchasing are high quality and cost effective


The sad thing is that NICE have no teeth.  They set out the guidelines but there seems to be no legal obligation to follow them.  Why?  To me, it seems a waste of money to spend months, years even, developing these guidelines if no one HAS to follow them.  Sure, choosing to interpret and vaguely follows the guidelines makes commercial sense for those private companies, who are commissioned by the NHS to treat patients where there are no local NHS facilities.  By paying lip service to the guidelines, they make a huge amount of money by providing these services for the NHS.

However, my cynical side says that these private providers are businesses.  Thus, they are in it to make money.  By following the guidelines vaguely, rather than pursuing rigorously the aim of clinical excellence, they are able to draw out the process and raise their profits.  Now, that gets my goat.  We are talking about people here.  Sick people.  Those in the mental health arena deserve better treatment.  They also deserve not to be discharged for "non-compliance" with a treatment routine when they are mentally unable to comply.  Again my cynicism wonders if they are discharged from treatment before they are physically and mentally fit, to ensure that the "recovery" figures look good on the annual report and thus ensure that the PCT and other relevant bodies will continue to commission their services.

Here's some text lifted from the Academy for Eating Disorders website (http://www.aedweb.org/source/Charter/) :

THE RIGHTS OF PEOPLE WITH EATING DISORDERS AND CARERS
I   Right to communication/partnership with health professionals
II  Right to comprehensive assessment and treatment planning
III Right to accessible, high quality, fully funded, specialized care
IV  Right to respectful, fully-informed, age-appropriate, safe levels of care
V   Right of carers to be informed, valued and respected as a treatment resource
VI   Right of carers to accessible, appropriate support and education resources

Mental health patients deserve better treatment, for however long it takes.

Monday, 28 November 2011

Hot water?

Having aquagenic urticaria means that my hot water requirements are 3 minutes per day at 38 degrees for a shower.  However, the rest of the family are great bathers.  They like nothing better than a nice long soak in a hot bath at this time of year.  Not that I get snarky about it or anything but the death of one of our immersion heaters has given me a very small smirk of satisfaction.

Sunday, 27 November 2011

Can you prevent an eating disorder?

I don't think so.  I could probably try and spell it out for you, along the lines of "Can you prevent schizophrenia?" but Laura and Extralongtail have done it so exquisitvely for me, I will hand you over to them.

Laura's take on the issue

Extralongtail's take

PS I am very. glad that Extralongtail has emailed me to say she has got her F.E.A.S.T. t-shirt to fit! (Thank you to Colleen and Ern)  I am finding Laura's new blog layout SO frustrating.  I don't mind the change.  I just miss the "Search" button.

ATDT Hall Of Fame

I am delighted to share the newly revamped Around the Dinner Table Hall of Fame

(And yes, there's one of mine in there.  Polishing halo and feeling smug).

Anosognosia or non-compliance?

Anosognosia means that you are unaware of the depth of your illness or even that you are ill.  For those clinicians who want to punish their patients for not "buying in" to their recovery, a quick Google of anosognosia should clear up why this is not possible for some patients.

Dismissing a patient for non-compliance is not an option.  We are dealing with a serious mental illness here, not a missed Year 4 maths homework.

Gah!

Wednesday, 23 November 2011

Exhausted but triumphant

So my sweet friend M is coming for 2 weeks over Christmas, with her son M (M&M - sweet - get it?).  This means I have to clear my office out so that we can fit a sofa bed in.  (No, M, he cannot sleep on an air mattress for 2 weeks!).  This means I had to move the filing cabinet into the cupboard, which is full of Christmas presents.  So I needed to wrap 6 stockings and various others presents to clear the cupboard.

On top of that, the wonderful Mary Beth, leader of the F.E.A.S.T. Medical Training Task Force sent me 10 boxes of the AED Early Recognition and Medical Risk paper (just under 2,000), as I volunteered to be the distribution point for the UK.  I need to send 3 boxes to various recipients at different ends of the country.  The addresses are somewhere on a long chain of emails and I get distracted reading the email chain whilst looking for the addresses.  I discovered Laura's Christmas present (which I had forgotten I had bought and is very stupid and silly and NO, Laura, you don't have to get me one!) at the bottom of the cupboard and need to get that off to the US before the last posting date (9th December) in a squashy envelope.  Note to self, always helpful to put the card in before you seal up the envelope.

I have also found a couple of old printers and scanners (why did I keep them?), two portfolios of my late mother-in-law's designs for jewellery needing sorting, bags of photos which need putting in albums and a collection of carrier bags.

So I have done the presents - about 200 of them today, got the boxes ready to go, found another home for the portfolios and the photos (in M's bedroom - got to keep her busy somehow!) and smooshed the carrier bags into a big pile.

Phew!  I need a lie down.

Monday, 21 November 2011

Laura does it again

I am beginning to really like re-blogging.  A handy list of Q&A's for parents and clinicians when faced with the tricky problem of weight normalisation

What they hear

Rearing teenagers is not an easy job.  One of the most difficult bits is communication.  I remember being a teenager.  Just.  The world was in technicolour and stereophonic surround sound.  Stuff mattered.  Really mattered and nobody understood.  And I mean, NOBODY.

My husband and I (risk of sounding like the Queen there!) try really hard to communicate with our children.  Having learnt from Professor Janet Treasure's Skills Based Learning for Caring for a Loved One with an Eating Disorder, we instituted a Family Forum.  We don't do this every week but it is a chance for us all to sit down and discuss what is on our minds.  What I discovered yesterday was that what we said was heard as criticism when it was meant to be a loving "ask for help".  That was the only thing they heard and then switched off.  Harrumphing and chuntering.  (I know it's tough that they have dinosaurs for parents, but do they need to say it out loud?)

Now those of us who have been through FBT and helped our children recover from an eating disorder can look back and vaguely remember the semantics of what the eating disorder threw at us (literally and figuratively) throughout the initial refeeding Stage 1.  My advice to parents who are currently in the trenches and at the sharp end of a disempowering, guilt-inducing tirade of eating disorder vitriol.  Don't bother to learn fluent "Eating Disorder".  Just switch off.

Pretend you are a teenager.

Sunday, 20 November 2011

Evidence Based Guilt

Have refereed (rather badly) WW III breaking out over privacy and possessions this morning, I finally vocalised my guilt.  I said it.  I laid it bare before the family and I feel better.

Guilt is a funny thing.  When I hear it, I always think of the Catholic Church or Jewish mothers.  Stereotypes, to be sure.  However, it occurs to me that maybe these two veritable institutions deal with assuaging the guilt better than an uptight, Protestant English woman because they allow it to be vocalised, examined and discussed.  Maybe, my upbringing doesn't allow the buttoned-up me to express my guilt, for fear that I may make my nearest and dearest uncomfortable with sharing my burden.  In much the same way, I find people stroking me uncomfortable, rather than comforting.  Is it good manners that prevent me from jumping up and down shouting "Me, Me, Me". Or is it my upbringing?  My nationality?  My personality?  My star sign?  My age?  My role as a mother?  As a wife? Adaughter? A sister?

So what is this guilt that you verablised, I hear you ask?  Well, it's about my cancer.  I told the family, somewhat incoherently due to a snotty nose and tears,  that in the darkest depths of my 3 a.m. self-indulgent, sob fests, I blamed myself for getting cancer.  What if I hadn't drunk, smoked, stayed out late?  What if I had eaten properly through my 20's, got enough sleep, not stressed myself about stuff that didn't matter?  What if I hadn't married and then divorced my first husband, hurting terribly a good man?  What if I had learnt then what I know now - that money doesn't make you happy, that shit happens, that people die, that a dog is not forever, that my parents aren't perfect, that crying is  OK?

I absolved my family's guilt at thinking the same thing.  Of course they, in their darkest moment, wish that I had done things differently.  That I had taken care of myself.  That I had been less stressy and worried.  That I had not got cancer.  It's OK for them to think that.  By discussing this openly, as a family, I absolved myself and them. I hope.

I spend a lot of time on the Forum telling people that you can't change the past but you can shape the future.  This has to be my mantra too.  I shall have it tattooed on the inside of my eyelids, so that at 3 a.m., all I have to do is close my eyes to be rid of the guilt.

You did not cause this. She did not choose this.

A brilliant post from extralongtail.  I wish I had her analysis skills and her self-perception

http://extralongtail.wordpress.com/2011/11/20/parents-and-anorexia-nervosa/

Thursday, 17 November 2011

Really? I mean really?

Two articles shared on Facebook have got my blood boiling for two completely different reasons.

http://blogs.babble.com/strollerderby/2011/11/15/does-a-7-year-old-girl-need-crotchless-panties-one-store-seems-to-think-so-video/

Personally, I have never seen the point of crotchless panties. Either wear knickers or don't wear them.  Wearing knickers which are missing the most essential bit (the gusset!) is defeating the object.  Crotchless underwear may have a place in the grown-up world but they are definitely NOT for underage girls.

The second was this article by Greggory Jantz.  No, I haven't spelt his name wrong!

http://www.eatingdisorderhope.com/article_origins-of-ed-jantz.html

It concludes with this list of what an Eating Disordered family looks like.  No "may" look like, or "could", or "sometimes". I am hard pressed to find a single point that marries with our family, unless you think that my viewpoint on crotchless panties for children could be covered under No 6.

 Greggory Jantz - in my opinion you are a IDIOT!


The truth is, it runs in the family. The following are characteristics of families of those with food-related problems:
1. Perfectionistic, including high expectations from the father, either verbal or nonverbal. This most often applies to the first-born.
2. Mother frequently dieted, accompanied by an over-emphasis on weight and appearance, compulsive dieting and fasting, diarrhetic use or laxative use.
3. Father distant, fueling an intense desire to to please the father who is typically emotionally unavailable.
4. Parent (0ften the mother) is co-dependent, often denying her own needs and assuming responsibility for everyone else.
5. Rigid discipline with severe punishment, including guilt and shame used as motivation, and perhaps humiliating or hurtful punishment.
6. Sexuality ignored or considered “dirty,” neglecting to give children basic information about sex or no opportunity to discuss sexual issues.
7. Daughters used as confidantes, perhaps with the father complaining to the daughter about the mother, and in fact the child may be used as the parent’s primary form of emotional support.
8. Children forced to be adults, especially daughters who “raised” siblings and children who are not allowed to be children themselves.
9. Children victimized in any way, which may include fondling, incest, neglect or verbal abuse.
10. Parent (often the father) addicted to prescription drugs, alcohol or street drugs.
11. Family members tend to ignore or deny negative emotions, often resulting in explosive anger, or anger and sadness never addressed, even to the point of covering up negative emotions just to please others.
12. Overuse of food for pleasure or reward, with food serving as the primary focus for pleasure and emphasis placed on sweets and rich desserts.

Wednesday, 16 November 2011

Gog Magog.

I have promised my children not to write endlessly about eating disorders.  Having spent 3 blogs chuntering, I will revert to chatting, just for them.

Yesterday, I met up with the divine R for lunch at Gog Magog Farm Shop.  She came laden with presents from my lovely US friends and we had a lovely gossip.

For those of you with a religious education, it may seem odd to hear of the Gog Magog Hills (and I use that turn loosely) around Cambridge with a name from Genesis.  When reading up on the history of the Gogs, I read: " include bronze and iron objects and pottery, including "Knobbed Ware", dating from the Bronze Age.", so ended up search Knobbed Ware which seems to have something to do with Phrygian artifacts and Troy.  Boy, those Bronze Age boys knew how to travel.


I had an interesting appointment with the Allergy Team regarding my aquagenic urticaria.  No Dr Ewan today.  However, I am now on an "exposure to water" therapy routine.  Or as my German doctor put it "Your particular venom is water".  So close and yet, so far.  An extra 20 seconds a day means I am now up to 3 minutes in the shower and delighted with the prospect that, once my hair grows back, I may have time to wash it!


My lovely cousin, E, came to stay for the night and we chatted away, gossiping about the family.  Her grandmother and my mother are sisters.  There were six siblings in total, six girls and one boy.  Two of the girls had five children each.  Two of the girls had three children.  The fifth girl (not the youngest but the second oldest) had two sons.  My uncle never married and had no children.  E and I thought it would be amusing to start a Family Tree on the Facebook App.  It was a stupid idea.  That way lies addiction and madness.  Trust me.  

Tuesday, 15 November 2011

Appeasement 3 - Weight

This is a really complex subject so I will try and break it down:


BMI and the DSM


The DSM threshold for anorexia nervosa is a BMI of 17.5.  Two points to notice.  The first is that a person with a BMI of 17.6 is still "underweight", albeit "moderate".   What is that about?  I note that you are not "mildly" or "moderately" obese.  This leads back to my "Fat is Bad" blog.  The second is someone can be suffering from an eating disorder at a BMI of 20 +. 


BMI is one of my pet hates.  I can do no better than quote from Wiki on this to explain my chuntering.


The body mass index (BMI), or Quetelet index, is a heuristic proxy for human body fat based on an individual's weight and height. BMI does not actually measure the percentage of body fat.


While the formula previously called the Quetelet Index for BMI dates to the 19th century, the new term "body mass index" for the ratio and its popularity date to a paper published in the July edition of 1972 in the Journal of Chronic Diseases by Ancel Keys, which found the BMI to be the best proxy for body fat percentage among ratios of weight and height;[3][4] the interest in measuring body fat being due to obesity becoming a discernible issue in prosperous Western societies. BMI was explicitly cited by Keys as being appropriate for population studies, and inappropriate for individual diagnosis. Nevertheless, due to its simplicity, it came to be widely used for individual diagnosis, despite its inappropriateness


However, BMI has become controversial because many people, including physicians, have come to rely on its apparent numerical authority for medical diagnosis, but that was never the BMI's purpose; it is meant to be used as a simple means of classifying sedentary (physically inactive) individuals with an average body composition (Highlighting mine)


I have said it so many times before, but just in case someone hasn't heard it before:


"No one patient is the same.  Therefore, no one treatment will work for everyone."  This applies as much to the diagnostic criteria, as anything else.  Once it is understood that Eating Disorders are brain disorders and that the physical symptoms are the end stages of the disease, rather than early warning signs, perhaps we will have a better chance of early intervention.  


Weight


Everyone has an "optimum function" weight range.  This is a spread of weight where someone is at their best physically and mentally.  The "normal" weight range is a BMI of 20 - 25 (well 24.9 to be precise but what's a couple of pounds between friends?).  There is a tiny (and I mean tiny) percentage of the population that is healthy at a BMI of 18.5.  Why do some clinicians insist that every single eating disorder sufferer falls into this category?


This brings me back to appeasement.  Notice how I did that.  So who are these clinicians appeasing?  First, the eating disorder.  I refuse to believe that all eating disorders patients are of the lean, slim, exceptionally fit marathon runner genotype.  If they were, wouldn't someone have noticed this?  Some may be but I would argue that they are the exception to the rule and that the majority of eating disorder patients fit into the "normal" weight range (BMI of 20 - 25) for their personal optimum function.

Secondly, these clinicians are appeasing the money men.  Whether it is the insurance companies in the US or the National Health systems of the UK, Australia and New Zealand, discharging a patient at a "healthy" BMI of 18.5 is saving money, in the short term.  There is a very strong argument that discharging a patient at a low weight  is more likely to result in a relapse and readmission.  Sigh.



Thirdly, they may be appeasing the parents/carers.  Offering hope.  Saying "haven't we done well" because a patient has reached a number on a scale and is now "recovered".  Apart from the fact that BMI is a population screen and not a diagnostic tool, expectations that a patient is now "cured" can be confusing, disheartening and disempowering for the patient and the carer.  


Fourthly, perhaps they are appeasing themselves.  They have fulfilled their part of the bargain and can flourish their signature on a piece of paper and add to their statistics of "cured" patients.


So, a "recovered" BMI of 18.5 is a nonsense really and should be ignored.  It is a just a number.  It is NOT a measure of mental or, I would argue, physical health


Brain Disorder


"Once it is understood that Eating Disorders are brain disorders and that the physical symptoms are the end stages of the disease, rather than early warning signs, perhaps we will have a better chance of early intervention."


Now I am not going to make a habit of quoting myself but I need to just get a point across here.  I listened to Dr Thomas Insel's speech at the F.E.A.S.T. conference in Alexandria and he contended that the physical symptoms of eating disorders are the "end" stage of the disease, in the same way that psychosis is the "end" stage of Schizophrenia.  If that is true, we should be offering intensive curative care to patients.  Discharging them before they have reached their "optimum function" weight range seems to me to be offering palliative care.  Does this mean that clinicians who discharge patients before they are recovered believe that nobody can recover from an eating disorder?  Or do they believe it is an eating disorder is a "choice" by the patient?  


For further information on Optimum Function, please watch State not Weight.

Monday, 14 November 2011

Appeasement 2 - Myth Busters

Let's talk about fat.

We live in a society that views all fat as bad.  Fat free everything everywhere.  Dire warnings about being overweight and how much obesity is costing the healthcare systems.  Fat has been demonised.  Fat is officially BAD FOR YOU.

I am hoping to bust that myth right here.   I don't need acres of newspaper, demonic headlines, scare tactis or even a 5 minute slot on the Today Programme or Jay Leno.  It is an essential part of our daily diet.  The recommended daily intake is 35% of your RDA.  Yup.  You read it right.  35%.  Now I get lost in the science of it all but fat seems , as if it plays a part in helping Cardiovascular disease, alongside brain function, cancer, neurology....

Neurology

Limited evidence suggests that long-chain n-3 fatty acids may delay or prevent the progression of certain psychotic disorders in high-risk children and adolescents.[87] The individuals diagnosed with schizophrenia exhibited reduced levels of both n-6 and n-3 polyunsaturated fatty acids, and the results of a study in which the treatment of high-risk children with a dietary supplement containing both eicosapentaenoate and docosahexaenoate produced a statistically significant (95% confidence, but not 97.5% confidence) decrease in progression to schizophrenia.

Consumption of ethyl eicosapentaenoate (E-EPA) partially countered memory impairment in a rat model of Alzheimer's disease[88] and produced a statistically insignificant decrease in human depression.[89]
Studies looking at the effects of omega-3 fatty acids on cognitive performance have seen mixed results. A study published in 2005 showed beneficial effects of omega-3 fatty acids in the cognitive performance of health subjects.[90] However, a later study found that fish oil had no effect on cognitive performance in individuals 65 years of age or older without dementia.[91]

To finish with, a little quote from the British Nutrition Foundation, as recommended by NHS choices for Nutritional Guidelines.  I am delighted to see that the BNF have not fallen into the "obesity hysteria" trap that is so prevalent in our society today.

Fat
Key points
  • Fat is made up of different types of fatty acids, some of which are essential for health in small amounts. Fatty acids are usually classified as saturated, monounsaturated or polyunsaturated depending on their chemical structure. Among the polyunsaturates there are further structural differences which determine whether the fatty acid is known as an omega 3 (n-3) or omega 6 (n-6) fatty acid. These structural differences directly influence health effects, with mono- and polyunsaturates usually being associated with health benefits when consumed as part of a varied diet. The exception to this is trans fatty acids, which are unsaturated in terms of their structure but behave in the body like saturated fatty acids.
  • Fat provides energy; 1 gram provides 37 kJ (9 kcal). Foods that contain a lot of fat provide a lot of energy. Fat is a carrier of fat-soluble vitamins and is necessary for their absorption.
  • A high intake of saturated or trans fatty acids can have adverse effects on health.
  • In the UK, saturates currently contribute 13% of food energy, which is above the recommendation of 11%, whereas average total fat intake is close to the 35% of food energy recommended for the population

Just saying

Appeasement 1 - following the Guidelines.

My daughter is doing Appeasement, Sudetenland and the invasion of Poland in history at the moment, so there have been many discussions about appeasement.  It has become a slightly dirty word in modern parlance BUT it did give both France and Great Britain (and USSR) a chance to speed up their armament plans and prepare for war.  Without the few extra months that were granted by Chamberlain's "Peace in Our Time" piece of paper, the outcome of the war, its length and the European Union would probably have been completely different.

Against this, we must counter with the fate of the people in Germany's newly annexed states, who were given no time to leave - the Jewish population, the Romanys, the enemies of the state who opposed annexation and Hitler, who probably all lost their lives.

So was this Appeasement of Hitler justifiable?  What was the cost of lives lost in concentration camps or shot and buried in mass graves in forests?  How do we compare it to the lives saved by the few extra months of war preparation of Britain, France and other European countries?  Did the fact that Appeasement did not work for Hitler sway Franco into remain neutral?  Not questions I could begin to answer but one that should be considered, especially at this time of year around Rememberance Day.

As I am the C behind C&M, I help write films for parents and clinicians to help them understand Eating Disorders and Evidence Based Treatment.  Appeasement is a subject that comes up a lot.

Many parents (and clinicians) find it helpful to separate the patient from their eating disorder and recognise that various "out of character" actions and reactions  are not the patient's choice, but a  manifestation of their brain disorder.  A common theme is the extreme anxiety about weight.  Many patients are "obsessed" with the number on the scales.  To appease their eating disorder and relieve their anxiety (albeit temporarily), they are compelled to make the number go downwards.  For a carer, the way to save a patient's life and to help the patient's body AND brain repair, we need to make the numbers go up.  This is a sort of reverse appeasement and is almost unbearably stressful for the patient.  However, if we do not and we continue to appease the eating disorder's unreasonable demand, we risk the patient's life.

The NICE Guidelines suggest that weight gain should be between 0.5kg and 1kg per week.  The NICE Guidelines took a long time and a lot of input from some pretty clever experts.  They were not conjured out of thin air round a table in the smokey pub on Saturday evening.  They were the result of months and months of hard work from hundreds of people and as Susan Ringwood of B-eat will tell you, they were not agreed without contention and controversy.

It bewilders me to learn time and time again on the Around the Dinner Table forum, that clinicians are afraid to push this kind of weight gain, once a patient is medically stablilised and the risk of Refeeding Syndrome has passed. (7-10 days)  Surely all they are doing is appeasing the eating disorder?

Sunday, 13 November 2011

Internet Dangers and Photos - You show me yours.....

http://www.dailymail.co.uk/news/article-2060065/Angie-Varona-Most-Googled-teen-tears-risqu-photos-ruined-life.html

Having two teenage daughters, I having been having peer-to-peer discussions about this particular phenomenon. To my mind, it is a progression from the "behind the bike sheds" "I'll show you mine, if you show me yours" to a dangerous and perhaps life-long action.

I have talked about the brain trimming in teenagers before and I do understand the whole concept of being "curious" about the opposite sex's plumbing and the "pushing the boundaries".  However, what a lot of people (let alone teenagers) don't understand is once it's out there in the ether, it can never be deleted.  That's right.  When you are a grandparent, your grandchildren could access pictures of you proudly displaying your 14 year old plumbing in close up.  Perhaps by then, we will all be nudists anyway so it won't matter.  Perhaps I am overly protective of my girls.

This leads me on to the difference between parents of teenage boys and teenage girls.  The parents of boys tend to me more "It's just a penis" type of thing, whilst the parents of girls tend towards the horrified.

As the parent of girls, am I perpetuating sexism by being so keen to not have explicit photographs (or videos - gulp!) of them circulating?  Am I reinforcing that they should be ashamed of their semi-clad or naked bodies in some way?  Should they be proud that they look so good and is it natural that they want to share their beauty with the world?  I should add here that neither of my girls have, to my knowledge, taken, let alone sent, any "revealing" photographs of themselves.

Am I being Victorian and prudish about all this?   I think child pornography is a BAD thing.  A really bad thing.  However, these photographs are, for the most part self-portraits and not masterminded by some paedophile ring.  They are a celebration of youth and beauty by the subject themselves.

A difficult dilemma, especially if you are the parents of boys AND girls.

Saturday, 12 November 2011

Continental Drift.

We spend a lot of time on the forum learning about our nations divided by language.  For example, thongs are knickers here but in Australia, they are flip flops.  Americans wear pants whereas we wear trousers (with thongs underneath?).  For me, nothing has illustrated this divide quite so much recently as the two conferences.

The F.E.A.S.T. symposium held in Alexandria, Washington, Virginia a couple of weeks ago.  Beautifully organised in a hotel.  Everyone very excited.  Lots of emails and posts on the forum.  Everyone seemed to take care of their travel arrangements and meet up effortlessly, despite having flown thousands of miles across the Atlantic Ocean or from the West Coast of the USA.  Some drove from the North.  Others from the South.  Hotel rooms were booked.  Sharing was arranged.  Buses from the airport were examined.  Car parking was available.  The countdown started in March, some six months in advance.  Everyone knew where to be, at what time and with whom.  The wonderful Laura Collins managed the event with military precision.

Marcella and I are due to talk at this event, show this film and take Q&As from the audience.  The F.E.A.S.T. UK team are turning out in force to support us, alongside one of our scientific advisers.  Our organisation tactics are somewhat different to our American cousins.  For anyone not familiar with the workings of the South London road and other transport system, it must sound as if we are talking a different language.

Farming Guilt

I understand why people resent farmers.  I am not talking about Welsh Hill Farmers or the National Trust's farming tenants at Hilltop.  I am talking about us "prairie" farmers in East Anglia  (an old article but still a widely held view).

Farming tends to run in 5-7 year cycles.  And those cycles are anti-cyclical.  So when everyone else is going on holiday and buying new cars, houses, carpets or sofas, we are struggling to pay the increasing costs of fertiliser, fuel and seed to produce enough grain to break even.  When food is cheap, farmers are struggling.  When food prices rise, we begin to make profits and have money to spend on replacing old machinery, repairing buildings and splashing out on a new combine harvester.  Not good for PR.

I bring this up because today is going to be my first official trip in my husband's new farm car.  It is the first new new car he has ever owned at the grand old age of 44 and he is, justifiably, proud of it and proud that we were able to afford it.  However, I am riddled with guilt that we have got a new car when people are really struggling financially to put food on the table, heat their homes and put fuel in their cars to get to work.

Is this my social conscience?  Or is it my own insecurity?  Should I be worrying about how other people think, when they don't know or understand the facts?  Or should I just brazen it out?  Too many decisions.  Instead I shall put on one of Carrie Arnold's beautiful hats and enjoy the ride.

Friday, 11 November 2011

What is it with the towels?

In my short-lived effort to rehome the teenagers' "stuff" back to their bedrooms, I had a bit of a splutter.  Why do teenage girls get a new towel from the airing cupboard EVERY time they have a shower or a bath?  When finished why do they drop barely-used towel on bedroom floor to add to the pile of damp towels already there?  Is there a part of the teenage girl's brain that is incapable of putting damp towel on a radiator or on the plethora of towel rails which lurk in every bathroom?

I think that this has something to answer for.  Too much of a short back and sides, rather than getting rid of the split ends perhaps?

Percentages

I have been forced to think a lot about percentages recently.  It seems to be all about percentages with Breast Cancer.  Percentage chance of survival after a lumpectomy on a Stage 3 cancer - 69%.  Radiotherapy adds around another 5%.  Chemotherapy takes that up another 10-15%.  If you have the type of cancer that responds to Tamoxifen, your chances are even better. 


My one and only chemotherapy session ended up with me having a severe allergic reaction.  Not to the drugs (1-10% chance of reaction) or to the antibiotics (7%) but to water (1 in 250,000,000 - looks more dramatic that way).  A second session of chemotherapy had a 50% chance to reversing this reaction.  It had a 50% chance of an even more adverse reaction.  That particular percentage was too scary for me.  No more chemo.  So a 74% chance that I won't get breast cancer again.


An interesting fact about chemotherapy.  It is only effective as a preventative in 12% of patients.    Medical science is not advanced enough to specify which 12% will benefit.  But it does mean that 88% of patients receive absolutely NO benefit from chemotherapy at all.  Just saying....


The other percentage that interested me was from a speech made by Dr Thomas Insel, NIMH at the F.E.A.S.T. conference about advances in the understanding of brain disorders and in particular, eating disorders.  A whole new world to understand.




"I think this comment about remembering this is multi factorial and probably many different disorders and they are not from the same cauldron and they don't require the same treatments.  We do have to recognise that we are still in an early stage and part of why I do what I do.....  We are at the 2% level and there is an awful lot we still have to learn.  We are at a very early stage of trying to understand these (disorders).  I think we are on a different path by saying that we have got to understand these from a biological as well as a psychological perspective and sometimes biological pieces of this, we may not see and psychological changes may be happening in a stealth way and requires a bio marker or something if you think there seems to be a problem.  That seems to be true in some other areas.  So all I am suggesting is we have to be open and we have to be humble at this point that there is a lot we don't know."

Here I am

A grey, misty, dank November day.  The first day of no radiotherapy after 4 weeks of  4 hour round trips to the wonderful Radiotherapy team at Addenbrookes.  A tower of bills and forms and VAT returns that need to be sorted and paid for the farm.  Piles of teenage daughters' "stuff" all over the house that need rehoming.  Christmas presents that need to be sorted and wrapped - I know, I know but when you get a cancer diagnosis, life is uncertain so you get organised.  A new film to be written on Signs and Symptoms of an Eating Disorder and another on Parents Don't Cause Eating Disorders.  A conference speech to organise.  So I decide to start a blog.

Today is a day for reflection all over the world.  It is a day when we remember those who have given their lives for us both in the two World Wars and in more recent conflicts.  I defy you to listen to this, and not be moved.  I wear my poppy with pride.