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Saturday, 31 December 2011

Flags and Bunnies

Two great blogs well worth reading:

Sarah Ravin's Red Flags
Extralongtail's Fluffy Bunnies

Bear and Hart - a heraldic union?

It has been a long time since I have watched really good TV.  Christmas "specials" tend to leave me quite cold and the great days of Morecombe and Wise or the Two Ronnies or Only Fools and Horses making me weep with laughter are long gone.

So I sat down with some trepidation to watch "Bear's Wild Weekends" last night.  I love Miranda Hart.  She and I are twins separated at birth and by 7 years.  A little overly tall, slightly clumsy, funny.

Bear Grylls is HWISO's hero.  A real boy's own adventurer.  I am quite fond of the old boy, too.  I suspect this is for an entirely different reason to HWISO!

It was great television and I really enjoyed every moment.  I am now trying to work out a way to swing a deal whereby I can sit in a helicopter holding BG's hand - preferably whilst still on the ground....

FOUND

Lauren has been found, safe, sunburnt but alive.  She is home with her family.  Thank you all for your concern and your help with spreading the word.  I admit to bursting into tears when I heard.  

Thursday, 29 December 2011

Missing Child



Lauren Richey, (on the left) is missing in Victoria, Australia.  She is very ill.  Any help with spreading her picture would be much appreciated.  Thank you

Tuesday, 27 December 2011

Spot the odd one out



If you have to spend Christmas away from home, become a dog and go and spend it at the House of Mutt.  I rather love the fact that, if you look very carefully, there is a child also lying in a heap of exhaustion on the floor.

Monday, 26 December 2011

What a difference some hair makes....

For my brothers
Me in May 2011 with my "old" hair

Christmas Day 2011
The tattos aren't real!

I miss my hair

Keep drinking the water

I fail to understand why a diagnosed anorexic who is underweight (BMI of 16ish) cannot be admitted to an Inpatient Unit over the Christmas period but has to weight for expert medical attention until 4th January.  Nor do I understand how a mother can be advised that 2 Fortisips (a total of 600 cals) per day "should" be OK as nutrition for the next 10 days, as long as the patient "continues to drink water".

I do not understand why a patient with anosognosia should be asked whether they "want" to be admitted.  If you do not believe you are ill, why on earth would you volunteer to go into hospital over Christmas?

I do not understand why a mother can't get instant help for her child who is consuming 300 calories a day.

If this was a patient with Alzheimers, Schizophreia, Autisms or Parkinsons, would not the Daily Mail be huffing and puffing?  Wouldn't the Sun be blasting about the patient being left to barely survive?  How about the Health Minister?  Would he not be sitting in his office, desperately coming up with a strategy to "make sure this never happens again"?

But hey - we are talking about an anorexic here.  This is just a diet gone wrong/a cry for attention/the result of abuse/stubborness, isn't it?  Why should we care?

Thursday, 22 December 2011

Basal Ganglia Disfunction

Such a catchy title.  Before you even start, how do you say "basal"?  Is it said the same way as Americans say basil (bayzle)? Or like the town in Switzerland (barzle)? Or like the first part of the vinegar (basal(mic))?

All I know is that it is a very nerdy subject, that I am trying to get my head round.  If you Google it, the results are headed up by my new favourite subject - Deep Brain.  There is talk of Tourettes, movement, OCD, strokes, Huntingtons, Parkinsons, palsy, schizophrenia and then this stuff about eating disorders.

Is it sad that all I want for Christmas is the Lask/Frampton book?

Organisation Part 2

My mother is due to arrive for Christmas any moment.
 
I know she will enjoy redoing the saucepan cupboard. I am not so sure about the jumper cupbaord, though.  I think she may be a little miffed that they are all muddled up and not colour co-ordinated.

However, I am not going to let her touch a single thing until she tells me where my jeans are.  They are not a) where I left them; b) in my cupboard; c) in my other cupboard; d) in my chest of drawers.  I have been forced to wash and dry my one pair of jeans overnight for two weeks now.

Let's hope when she returns to the scene of the crime, she might have Total Recall.....

Tuesday, 20 December 2011

Minefields

I admit I am way in over my head here but it is something that is coming up more and more.  So here's my cockamamie theory.

Mental illness has been all about the "mind" and Freud and his psycho-balderdash but we are now discovering that it is more and more about the brain, the physical entity.  Recent work done by clever clinicians in different "mental illness" fields (and some in the same fields coming to the same conclusion from different angles) seems to show that a physical malfunction in the brain can explain a variety of different disorders.

"At present, nearly all of the therapeutic approaches for treating eating disorders have been borrowed from the treatment of other disorders. In addition to factors noted above, a major impediment to developing novel treatments for eating disorders is the lack of a clear understanding of their underlying pathophysiology. Although pathophysiology has been fundamental to the science of cancer, heart disease, and endocrine disorders, the science of mental illness has largely been preoccupied with diagnosis, the development of theories based on observations of behavior, and the promotion of treatments suggested by case reports. This picture is changing with the increasing recognition that mental illnesses are brain disorders (Insel & Quirion, 2005). Unlike neurological disorders with focal lesions, mental disorders appear to involve abnormal activity in brain systems. One implication of this recognition of mental disorders as brain disorders is that the pathophysiology of mental illnesses, including eating disorders, can be approached with the tools of modern neuroscience as well as the behavioral and observational tools of psychology." (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2228330/ - for full article)


Bring on Cool Brain Guy....


So I get all that.  I understand it is time to move away from the flim flammery of whether you fancy your father and/or are feeling upset because you were born without a penis (Huh??).  What I think we are missing here is using the whole body, including the brain, for diagnostic and treatment purposes.


When treating an eating disorder, refeeding the body and brain to a healthy weight is the first step on the road to recovery.  It is about food, not feelings.  However, other "mental illnesses" also result in a serious lack of care for physical wellbeing. I am not talking only about deliberate self harm here, in the form of cutting or drugs or somesuch.  I am also talking about neglecting to eat properly, wash, general cleanliness or, at the other end of the spectrum, overwashing and obsessiveness about cleanliness.  Surely, all mental health patients should be helped with their PHYSICAL wellbeing too?


What I am saying (waffling?) or rather asking; Is it time to stop treating the brain as an entirely separate entity from the body and start treating the body as a whole?  



Monday, 19 December 2011

Pandas, Strep and useful information

My good friend Laura (the Fairy Blogmother) has been blogging about Pandas.  I felt I should share this information too.

Strep infections are very common.  We have certainly experienced one or two in this family.  Looking back, I wonder if 10 days of penicillin could have saved us 18 months of heartbreak.

Sunday, 18 December 2011

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Internet Safety

Although those of us in the murky twilight world of eating disorder care have to deal with a slightly more extreme version of keeping our loved ones safe from unsuitable sites, this thread by our new Dad on the forum, is very good advice for all parents.

Bingo!

I had a bath this morning.  Not a long soak, with facepack, book et al but a bath nonetheless.  It was bliss.  You don't know what you've got 'till it's gone.

Thursday, 15 December 2011

Nice tractor

This is just plain silly but it has some nice cows for M, C, M, Carrie Arnold and Stephanie Milstein.


It has  a pretty cool combine too. 

Brain in your guts


Does this explain a lot about serotonin levels in eating disorder patients or am I making a leap too far? Thanks darling M, for this.  

We don't need no education.....



Having had a long conversation with another UK ATDT mother yesterday, I decided to post a poll on the forum about users being discouraged from using the forum as a means of support.  The results have been surprising.

A lot of parents and carers do not make public to their children that they use the forum.  This is a viewpoint that I understand.  It is a personal space, a safe haven, a evening with your best friend and a bottle of white.

Some of us have been vigorously encouraged by our children's eating disorder to leave the forum, because that is the one place that many of us have found all the information and support we need to help our children recover.

But clinicians?  What have they got to hide? Surely a carer who is up to date with the latest research, evidence based research at that, a good understanding of the etiology of an eating disorder, its complications, presentations and with a worldwide, 24 hour support network, would be a blissful scenario?  Hmmm

The Grass is Greener


on the other side of the Channel.

Bullie (not his real name) may be moving to pastures new.   He has done his job admirably but now we need to let him go and get a new Service Engineer for the herd.  He is not destined for the deep freeze.  He plods inexorably on in his search for greener grass.  He is being looked over by a Belgian breeder this afternoon and soon may be getting his passport and heading for the Dutch French border region.





I shall miss him because, despite appearances, he is easily pleased.  Just give him food and woman and he is in clover.  Enough silly puns.

Yoga and Yenta

http://extralongtail.wordpress.com/2011/12/15/eating-is-non-negotiable/

I stole the title from the Fairy Blogmother.  In response to this post, the comment came that the voice of the forum could be heard - "Breathe" and "Eat".

 Or just BE.

Monday, 12 December 2011

Are they human or are they doctors?

I have to admit that I have always held doctors in awe.  All that training and knowing the names of all those complicated fiddly bits inside the body makes me tired just thinking about it. Those who then go on to specialise in psychiatry or brain surgery seem to spend most of the first third of their adult life training. In the last few years, I have met (both in real life and cyberly) a lot of very grown up doctors and other clinicians and held long conversations with them. 

I prefer the conversations on the internet because I can go off and Google pub med and other such websites to understand what they are saying, without appearing like a complete idiot.  I sometimes email my Fairy Blogmother to ask her or, if its Fairburn, I ask our resident expert.  I find face to face conversations difficult but tend to nod my head and then rush off to find an internet connection before I forget the gist of what they were saying...

Imagine my surprise on getting an email from an eminent Maudsley professor on Sunday morning, teasing me about my crush on super cool brain guy.  It just said "Tee Hee".  At least I didn't have to google that one!

iCloud therefore I am

So three weeks after my last phone died a death, I was due for my upgrade today.  I have got an iPhone.  It is white and seems to ping a lot - maybe because I get a lot of emails?  It has someone called Silly living inside it who is supposed to answer questions.  Silly is rather dull.  He doesn't understand swear words - a necessary part of life when you get a new phone.  Questions such as "How do I get back to the main menu?"were not answered and when younger d asked him to marry her, he wasn't very keen.  I suspect he doesn't do Bevan humour.

Hey ho!

Saturday, 10 December 2011

Shape shifting

Elder d and I had a lovely morning shopping in Bury St Edmunds.  I was wittering on about CRT and how much I was looking forward to doing our trial with Kate Tchanturia.  This arose out of an interior decorating tip I picked up from my wonderful friend (and witch) CMP, last Thursday.

She had cleverly cleaned out her cutlery drawer and put her knives, forks, spoons and teaspoons in to separate pots.  So I bought three large and two small of these and have given myself a new drawer in the kitchen and have my utensils neatly in a row on top of the dishwasher.  Job done.  Well almost.

The other two members of the family, HWISO and younger d, have a problem with set shifting.  This means that when they return from their various outings at about 6 pm this evening, there is going to be a little uncomfortable period set aside for complaints and grumbles.  I have found if I stand firm, the whinging  eventually dies down until I change something else.  My own form of CRT, I suppose.

I just hope they have finished their splutters before the start of Strictly Come Dancing.

Body dissatisfaction

An interesting point raised by Carolyn Becker.  She is a great proponent of the body image programme, of which I have been faintly sniffy and dismissive.  However, something she said has really stuck a chord.

The body image programme is not specifically designed to "prevent" eating disorders. Hopefully, that would be a by-product.  It is intended to promote a positive body image and spread the whole different horses for courses, rather than androgynous stereotypes.  This is not a bad thing, per se, as long as any trumpet callings about prevention are left to one side, rather than placed centre stage.  Anything that helps build self-esteem and is, essentially, a kind act is fine and dandy, in my book.  However, there are lots of people trying to debunk this "positive body image" programme from an entirely different angle.

People are trying to debunk it by saying that a negative body image is a "good" way to combat the media hype....no, sorry....I meant to say the "obesity crisis".  Now that to me, is really screwed up.

Organisation

When I went off to London last week, I left my mother in charge at home.  She was wonderful.  The dogs and children and HWISO loved having her.  Apparently, she doesn't nag about homework and is always grateful for a glass of wine.

And I love her.  So very much.

BUT she did some "organising" of my stuff whilst she was here.  The saucepan cupboard, a week later, is nearly back to its organised chaos - the ones I use most at the front and the others jammed behind so they cascade with a satisfying crash should you dislodge the wrong one.  My sweater cupboard is a whole new problem.  I had them organised in type - polonecks on one shelf, cardigans on another and so on and so forth.  Mum, having been shooed out of the kitchen, idled away a lovely hour putting them all into colours, rather than types.  This has made getting dressed this fine, crispy, cold winter morning a little more stressful than normal due to being unable to find favourite poloneck as it was stashed carefully near the bottom of the pastels pile.  Sigh.

Thursday, 8 December 2011

Military wives or the X factor?

http://www.youtube.com/watch?v=0h39vBsiR68

How could anyone resist this wonderful song, lyrics taken from letters to soldiers who were serving in Afghanistan?  I do not watch the X Factor so I am unable to comment about the contestants.  However, this charity record, released on 19th December, SHOULD go to No 1.

http://www.amazon.co.uk/Wherever-Military-Wives-Gareth-Malone/dp/B006DWW4SA

Have you ordered yours yet?

Autism and the psychoanalyst

http://www.dailymotion.com/video/xlowfu_the-wall-or-psychoanalysis-put-to-the-test-for-autism_news

A distressing film.  I found this because of a brilliant blog.  Two paragraphs I have to quote in full in case you don't have time to read the whole article:

The psychoanalysts in the film quote Bruno Bettelheim (a proponent of the "refrigerator mother" theory of autism), Sigmund Freud (father of the Oedipus complex and penis envy), and Jacques Lacan when discussing the causes and treatment of autism. In the 1960s, Lacan described psychotic and autistic children as victims of the alienation of a psychogenic mother who is unable to separate from a child who is a substitute for the penis she was born without.


 In the first interview shown, a psychoanalyst explains that when treating a child with autism, toy crocodiles with their large mouth full of sharp teeth represent mothers wanting to eat their young, and that a phallus symbol representing the father (in this case a pen) needs to block the mother's mouth to keep her from devouring her child.

Gah!

Prevention - better than cure?

I think the place to start would be to define exactly what we mean by prevention

prevention [prɪˈvɛnʃən]
n
1. the act of preventing
2. a hindrance, obstacle, or impediment

pre·vent  (pr-vnt)
v. pre·vent·edpre·vent·ingpre·vents
v.tr.
1. To keep from happening: took steps to prevent the strike.
2. To keep (someone) from doing something; impede: prevented us from winning.
3. Archaic To anticipate or counter in advance.
4. Archaic To come before; precede.


Which definition would you use for prevention?  If we are talking about archaic definitions (anticipation), would this mean that with the use of, say, bio markers, mental illness could be anticipated and then prevented? And what exactly are we trying to prevent?  The end stages of a disorder (psychosis, starvation) or prevent that actual "faulty wiring"?  Comments please.


Tuesday, 6 December 2011

Focus

HWISO has given up smoking.  It's not tense here, or anything  Just saying.....

A Georgian In London

Kate Tchanturia, psychologist, at KCL is one very cool lady.  I saw her talk the other day.  She spoke in English, her third language (after Georgian and Russian).  I always admire anyone who can talk more than one language, let alone discuss the workings of the brain, complete with large plastic model to point at.  She was discussing Cognitive Remediation Therapy.  My really intelligent question at the end of her fascinating talk was when was her book coming out.  She smiled sweetly and said it was still in the trial phase but there may be a chance that a few parents could try it out at home.

This is a fascinating therapy on so many levels and across so many areas of mental disorder, not just eating disorders.  The main aim, as far as I can work out, is to increase flexibility in cognitive tasks.  There are no points and, therefore, no prizes.  It would be a set of exercises with no winner by dint of intellectual excellence.  Thus, I immediately saw how useful it would be for our family to do some of these exercises (not that we are ultra competitive or anything).  I see endless possibilities outside the mental health field as well.  

I am hoping that Kate will pick me out of the 25 or  so families who have volunteered so far.  I also hope that someone, somewhere will fund Kate's research so that all 25 of us volunteer families can have a go.

Xylem and Phloem

Eldest daughter went for her interview for 6th form at the Perse on Saturday afternoon.  We are not entirely sure it went well after a discussion about Xylem. She has always been slightly dyslexic, so has had to concentrate really hard on spelling.  This means that her pronunciation can sometimes be a little erratic.  Thus saying Xylem out loud, without knowing you pronounce an X as a Z made for a little confusion.

This lead me on to the difference between reading something and hearing it.  I have never had any imagination.  I did not "get" the whole Harry Potter thing until I saw the first film.  I was then able to whisk through the rest of the books, as I had a clear visual picture of what Hogwarts looked like.  I passed all my exams by being able to visualise my notes.  However, I have never managed to "see" things after reading descriptive passages in books.

I suspect this is why hypnotism to help me give up smoking didn't work.  All that asking me to visualise numbers going backwards left me totally cold.  I have never been able to count sheep, when unable to sleep either.    Perhaps, this puts me on the Aspergers spectrum?  However, having done the AQ test, I got a very low score.  I only know one other person who scored lower than me - the wonderful mum of my friend, C.

We have had many discussions about Janet Treasure's Skills Based Learning  on the Forum.  I found the book rather dry and wordy when I first read it.  I didn't really get it and it all seemed either too technical or too trite - all those animal analogies distressed me, as I was a bit of everything, except ostrich!  However, once I had met Prof T and discovered what a wonderfully warm, kind and funny woman she is, the whole book suddenly became alive for me. When she explains the sciencey bits, she does so without condescension and she can encapsulate an animal by a facial expression.

I am not complaining about my inability to imagine backdrops to great literary works.  Life without visualising Mansfield Park has not been particularly hampered.  You see, I can say Xylem, as well as spell it.  However, I have no idea what it is.....

Dog Days

I have been nagged by my great friend Sarah to do another blog.  To be honest, I have been wiped out by my trip to London for the Maudsley Carers Conference and have been trying to assimilate the information.  But since Sarah asked, I thought I would give her wonderful dog hotel, The House of Mutt, a bit of PR.  Not that she needs it, being the official Dog Hotel for Harrods.

Now Sarah is pretty cool.  She was the first female officer in the Household Cavalry Regiment.

Now she, and her husband David, run the most wonderful luxurious and rumbustious dog hotel.  In Suffolk, near Knettishall Heath, the hotel organises wonderful holidays for city dogs.  I just happen to love the photos.

The reason I love Sarah is she is so much like me - a no-nonsense type of girl.  Very few Terms and Conditions start like this:


Before outlining the more usual terms and conditions, it should be emphasised that all dogs at the House of Mutt will be walked on fields, woods, riverbanks, beaches and forests, and will be living in a home environment alongside a small number of similarly socialised dogs.  Every care will be taken to ensure the dogs are safe at all times, but if owners are not happy with this level of fun and freedom they should arrange for isolated, kennelled accommodation elsewhere – what I call the ‘hermetically sealed box option’.

Saturday, 3 December 2011

Didn't we have a lovely time, the day we went to Janet's?

http://www.aroundthedinnertable.org/post/Carers-Conference-5605082

LauraCollinsUS
Moderator
Registered: July 31, 2007
Posts: 5,379
    Today at 02:24 PM#41

I am equal parts GREEN WITH ENVY and CHEERING LOUDLY for this wonderful moment in parent/carer history. The event sounds wonderful in tone, in usefulness of content, and inclusion. I am so happy for F.E.A.S.T. -UK, and for all the wonderful clinicians and researchers and parents and others who planned and shared the day. 

But the envy... so wish I'd been there!

__________________
Laura Collins (Moderator and forum founder)
Daily blog post at: http://www.laurassoapbox.net


You could move, Laura.

Thursday, 1 December 2011

Sitting on a Train

Life has moved on since I used to commute in the early 1990's.  You can get WiFi on the train and everyone seems to chat very loudly on their mobile phone.  I have just overheard someone ask "Have you been fusioned as well, mate?".  It seems that they speak a new language as well.  What is fusioned?  I thought it was something to do with nuclear science or cooking.  I am very tempted to ask but, with the hair not quite back yet, I look like an escapee from the local prison anyway and fear I may send the young man screaming for the guard....

A call to arms from the wonderful Laura Collins http://www.aroundthedinnertable.org/post/Pediatrician-education-5603284.  As we do not have growth charts here in the UK, I am not sure I am going to be able to cobble together any relevant data for her, but any of you who do have charts, please follow the instructions and give her what she needs.

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