Marcella

Tell Sid

2012-01-30T20:05:00.000Z

I'm busy adding links to this conference to my e-mails, trying to slip mention of it into any vaguely related conversation, booking my train tickets to go myself.

However I do realise that conferences like this are very expensive. Many of my dear friends who would love to go don't have the necessary money, or the time out of their caring roles be those at home with their own children or as professionals. However if just a few people from each area went, learned, discussed and contributed, the knowledge on offer could really improve things on the ground for many people.

So please tell Sid, especially if he or she has access to e-mail lists for students, clinicians or researchers, or has the key to the training budget or knows someone who does.

A Wordsearch! The Key IS Available Online

2012-01-29T21:19:00.000Z

Yet another important word beginning with A

2012-01-22T16:29:00.001Z

and yet more to get confused by.

I can't decide whether it's a mark of stability or of being stuck. All I do know is that this year I'm thinking about the same sorts of things as I was this time last. I'm a bit ahead of myself in terms of exact dates, but that's probably because Easter is earlier this year and the weather is warmer. It is with some discomfort that I realise that I'm still blathering on about Lent, I still haven't read the books I intended to last year, let alone got onto the ones I wanted to look at afterwards and with Eating Disorders Awareness Week coming up I'm still wondering what to do with it.

I do have one new thought, or at least one new word, to juggle with. "Alexithymia". Is the idea that what I may describe as Anosognosia is thought of (and has been for years) as Alexithymia by some others going to be helpful? Are both terms going to be offensive to many? Am I ever going to stop going round and round in circles on the same subjects within religion and medicine?

It's Lent already

2012-01-15T22:18:00.000Z

Having burbled about it still being Epiphany and certainly far too soon to think of Lenten discipline, I'm now going to contradict myself completely and say that there is already a hint of Lent about. That's not the Lent of the Church yet though, just Lent in the literal meaning of the lengthening of the days. In between blogging and ranting on others' blogs and e-mailing unfortunate clerics, I went for a walk. It was four in the afternoon when I left the house and it wasn't dark! Spring is, very tentatively, coming. It must be coming in Sussex too as my sister took this photo yesterday afternoon. Isn't it lovely?

Isn't it a bit early to be thinking about Lent?

2012-01-15T22:11:00.000Z

asked my dear friend Sandra when I was moaning about trying to read this as research.

Yes it is. It's still very much Epiphany around here with the star still up on the church tower, baby Jesus still smiling in his crib and the gold, frankincense and myrrh still travelling round in the back of my car because I haven't put them back in the cupboard yet.

But it will be Lent soon and the Church is preparing for it. Preparing well, preparing sensibly. Thinking of things congregations and individuals can do to prepare for Easter. And that IS all well and good.

It's just that, having such a large hammer which I carry around in my hand at all times, I can't help but see the nails, as in potential problems with some of the suggested activities.

It IS a mere coincidence that Eating Disorders Awareness Week happens the week before Lent but I for one will be using it to prepare for a sensible, joyous Lent with due consideration for any who are vulnerable to the dangers of too much emphasis on self-discipline.

Epiphanies

2012-01-11T10:10:00.003Z

I haven't had any epiphanies in the sense of revelations this New Year.

The transition from 2011 to 2012 has been fairly unremarkable, fairly plodding, fairly uncelebrated. We enjoyed a good party with neighbours on 31st December but got home before 12:30. Those of us who celebrate Hogmanay in a big way got a bit wet, but otherwise the festive season has been blessedly uneventful for us. After the holidays those of us who have jobs went back to them, those of us who are working on our lives at home went back to that.

In the sense of church services though, I've had at least eight days of Epiphany.

It has dawned on me, not as a blinding revelation but like a sunrise in fog, that the pattern of Christmas Day on a Sunday, New Year's Day on a Sunday followed by Epiphany on a Friday and decisions within the church as to which date to celebrate it on must happen regularly every six years or so give or take the vagaries of what happens with leap year. I was in no fit state six years ago to realise what day anything was on but this time it really made a difference to the amount of times I got to reflect on the story.

On New Year's Day after a stirring start in the morning, in the afternoon we did the full processional journey round the church with the children. It was a risk to hold a service at 4pm on New Year's Day but I knew there would be enough of them because I knew that at least four of them had birthdays in the month that they would wish to have celebrated. There were. Not hoards but certainly more than one king for each gift. And we processed and we sang and we learnt with real incense and fake but equally popular gold and myrrh.

On the Thursday we repeated the story with smaller gifts and smaller children but with the same reverence at the crib where, as young C pointed out, baby Jesus had his eyes open to see all that was going on.

Hopefully that will count as celebration of the eve of Epiphany because Friday I'm afraid was an ordinary working day. On Saturday the gold and frankincense were lucky not to get thrown into the gobbler machines down at the tip to which I travelled, along with half of the town's population, in order to dispose of that part of the general clutter of Christmas that can't reasonably be stored in the loft for next year.

However on Sunday we were back to singing from the Christmas section of the hymn book and readings about following the star. In the evening there was a service of readings and music and this prayer;

When hope invites us to journey
elusive, beckoning onward
but never in our grasp:
God of wisdom and promise
give us courage to travel on.

When dreams glimmer in the distance,
fading, clouded and hidden
or shining with new brightness:God of wisdom and promise
give us courage to travel on.

When established patterns collapse
into the uncertainty of the unknown
and security dissolves into a memory:
God of wisdom and promise
give us courage to travel on.

When the illusion of success
threatens to divert us
and silence our souls' yearning:God of wisdom and promise
give us courage to travel on.

When we think our journey has ended
in the star-lit glow only to find
the end is a new beginning:
God of wisdom and promise
give us courage to travel on.

I had not heard it before although a quick google tells me it is by J Berry and considered suitable for "inclusive worship". It's also to my mind suitable for the rather exclusive, rarefied atmosphere of a Sunday evening Epiphany Carol Service in Middle England and it was very suitable for me.

The gold, myrrh and what's left of the frankincense (I tried using some of it to mask the smell the cat makes by peeing on the gas fire but it didn't work) are still travelling around in my car. They will hopefully find rest tomorrow if I remember but otherwise they'll have to wait 'til next Sunday. All in all it's a messy, plodding start to 2012 but there's great hope there, prayers from friends, plenty to do. Much like the journey of the Magi really only they had camels instead of a Vauxhall.

The Sea The Sea

2012-01-10T22:42:00.000Z

So here we are again

2011-12-31T09:10:00.001Z

Sir William's birthday, the end of the year, time to look back over the last 12 months or so and think about the next

It hasn't been one of our best years, or one of our worst. There have been no triumphs or disasters just quite a bit of plodding which could be called consolidation even if a few of the things that have been consolidated aren't welcome.

Nevertheless we have survived and are now older if not wiser. Definitions of "home", "family" and "work" have all been stretched and examined and in that spirit one of my greatest joys was worshipping with the L'Arche Community at the Greenbelt Festival, Dreams of Home.

I have the usual plans for 2012 - finish what I start, think before I speak, get to bed on time - the kind of resolutions that will be broken by 2nd January. I also have dreams of greater things including kicking out some of the unpleasant things that have been allowed to consolidate within our home. Maybe I will, maybe I won't, but one thing's for sure; I've bought my ticket for Greenbelt 2012

The Christmas Break

2011-12-27T12:23:00.000Z

I have had quite a relaxing Christmas - I've BEEN to a lot of church services but haven't had to do anything for the preparation of any of them since Thursday. I've EATEN a lot of meals but the cooking and washing up has been shared out within the extended family. I've suggested activities but since these have only consisted of which TV programme to watch or whether a walk up the hill or round the church would be most pleasant and since the people to whom the suggestions have been made have all been reasonable adults it can hardly be called party-planning.In fact the most stressful thing I've done for the whole extended weekend was to find a parking space in town for the rugby and once this had been done the match was extremely enjoyable.

It is with some guilt therefore that I reflect on how these three days have gone for friends and family who have not been in the position to drop everything else for a while and just eat, sleep and watch The Kings Speech on DVD. People whose daily lives, either in the short or long term, require the support of professionals, desperately need active intervention or respite or routine which isn't available over the Christmas break.

Services tend to be pared down to the bare minimum so that staff can also have a break. Doctors and nurses, social workers and teachers all need rest as much, if not more, than the rest of us so I fully understand why complete services cannot be continuous over the break. We are fortunate that there are at least emergency service around. Acute oncology wards have been operating - my daughter spent Christmas morning working in one. A&E and maternity have still been there - one brother in law was on a drip most of the day in one while another spent all afternoon and evening with his partner in the other waiting for the birth of their son. However those needing just slightly less acute services have had to wait, to beg or to go without. They've also had to go without the full support of informal networks be they on line or in person because people like me have been busy watching the telly or entertaining grandparents. For my part in this I apologise.

I have had a good break. I can come back from it refreshed, reinvigorated and certainly very well nourished. For those of you who didn't may you get the help you need now and let those of us who have a duty to stand up and shout when things are wrong know what we can campaign about while you get your chance to spend some time at the rugby or the fireside whichever is right for you.

The etiology of bad parenting

2011-12-15T23:25:00.000Z

My dear friend Laura posted something on her blog which caused offence. As a responsible blogger she withdrew the post although the comments remain alluding to the controversy provoked. She also further explained her position on the subject in a further post.

I happened to agree with her original sentiments. As a parent I am open to the charge of "well you would say that wouldn't you" and willing to accept that this is true. I can't view the subject from the position of a sufferer, or a clinician, or even a service commissioner because I'm not any of those things, I'm just a mum.

As a mum I am distressed at the atmosphere of blame and suspicion that surrounds parents of children with eating disorders. Yes, that is in part because I don't like being blamed or thought of as suspicious. It challenges my identity in my primary role as a mother and undermines my already pretty shaky self-confidence. That doesn't really matter though. If I feel hurt for me then I have both the right and the opportunity to pull myself together and get over myself.

The problem I have with the pervasive atmosphere, and it is still pervasive if subtle and often unstated, of suspicion and doubt, is that it has seriously affected the quality of care given to my daughter and, I believe, prolonged her illness.

I am not a perfect parent. I have made mistakes during the upbringing of both of my children which have had unfortunate consequences for them. However the biggest mistake was to be so traumatised by my daughter's illness, and so frightened that it was somehow my fault, that I was not able to fight for care for her when she needed it. I became what Janet Treasure in her book Skills Based Learning for Caring for A Loved One with an Eating Disorder calls a "Jelly Fish" too wrapped up in my own guilt and shame about the disorder and our failures in its treatment to be able to fight for what my daughter needed - active treatment for a disorder which at the time she was unable to acknowledge or fight against herself.

This is not to say that clinicians shouldn't be vigilant to the possibility of bad, even appalling parenting. Abuse should always be considered to be a possibility in any vulnerable patient and the evidence seems to show that it is more likely in those with binge-purge type eating disorders than in control groups. Treatment providers should always be open to the possibility of abuse and have clear protocols and treatment pathways should they find themselves dealing with a client who has suffered such trauma.

However they also need to be aware of the needs of primary caregivers for education, support and empathy, not just for their own sakes as human beings, but in particular because it is they who have to provide the majority of care for the sufferer and they need to make the best possible job of it.

Caring for a sick child is always difficult. It doesn't magically bring out the best in people whether that illness is schizophrenia or leukaemia There is evidence to suggest that the pressure of caring for someone with an eating disorder may be even greater than with other illnesses. As Treasure says, "in units treating eating disorders staff burnout, sickness or difficulties with recruitment and staff continuity frequently occur". This is with paid staff who have such luxuries as training, days off, supervision, sleep.... In most systems most patients are treated as outpatients. In the UK the evidence based NICE guidelines state that "Most people with AN should be managed on an outpatient basis" and "the great majority of patients with bulimia nervosa can be treated as outpatients" This means that the patient's interactions are mainly with their family. 50 minutes of therapy once a week (if you are lucky and the therapist isn't off sick) isn't going to be much good if the people surrounding the patient the rest of the time are cowed by guilt and so busy looking over their shoulders for real or imagined threats of accusations of misconduct that they are unable to adopt the compassionate, caring, calm sense of purpose that is necessary to support someone with an eating disorder.

On Strike?

2011-11-30T00:01:00.000Z

No, I'm not. I have sympathy with the feelings behind the strike and share the strikers' frustrations at the way the country is being run, but the only union that I could join at the moment isn't striking and if they were it wouldn't help our pensions.

I am torn about the strike. Should nurses and teachers be allowed to withdraw their labour? Yes. Of course they should. Will it harm vulnerable patients and children? No. I really don't think that they will let it. Will some parents and other family carers be inconvenienced? Yes. Sadly it won't be the bankers who can afford nannies and granny sitters who lose out but the working mums with no pension rights and the carer struggling to look after auntie and still hold down a low-paid job. Will the strike further alienate public and private sector workers who have much more in common than they have difference from each other thus making it even more difficult for labour to organise and social justice for all to be achieved? Probably. Had I been in the position I was in 10 years ago being asked to do something by professionals with little practical support and had they then withdrawn even that for a day would I have been hopping mad? Abso- f&*(ing-lutely. Is my family currently enjoying the very benefits being withdrawn from people who just happen to be a bit younger but have still paid in as long? Um, yes.

I really don't know what I would do if I had the right and the opportunity to strike.

The fact is that I don't - so I don't have to worry about it too much. Tomorrow I won't be posting but that won't be because I've withdrawn my labour it will be because it will be December and NaNoBloMo will finally be over!

A Social Experiment

2011-11-29T00:19:00.000Z

On Saturday I went to a part of the world where I have only been twice before, the London Dockland Area. In 1984 I went there as a student on the Open University Social Sciences Module. We studied the effects of the history and economy of the area on its people. About a decade earlier I visited the place for the first time when my parents briefly considered becoming part of a social experiment of the day bringing new, privately owned property to a hitherto entirely industrial and working class area.

This time my visit was also as part of a study. The person doing the study made great pains to say how the information would be kept private and anonymised so I'm not going to break her cover as she's guaranteeing mine. Suffice to say that she was female and delightful and that I wish her well for the publication of her work. As it is qualitative rather than quantitative it will probably be published in a social science rather than a strictly scientific or medical journal but it is none the less valuable for that.

As well as giving her the information that I hope she wanted, I also had an opportunity to look round the area. It's fascinating. Some of it is a little soulless, some of it is still scruffy but has more heart, quite a bit of it still isn't finished but all in all, I liked it. It's somewhere I'd like to go back in less than 25 years and have another look.

An intellectual cage fight

2011-11-28T00:48:00.001Z

VS

Thomas Insel vs Oliver James - an intellectual battle I would love to see.

Advent Fast

2011-11-27T00:23:00.000Z

I know one person who will be disturbed by the picture here, but many, many more by the title of the post.

"Fast"? What is the woman doing? Surely she wants to ring 999 at the thought of anyone skipping one breakfast and would like to have the words associated with restricting food intake not just banned from use but expunged from the English Language?

Well yes, I do and I would, but it's not that kind of fast I'm thinking of.

Some Churches do encourage fasting during Advent. The Russian Orthodox Church to which my husband belongs does, although the rules are very relaxed and there seem to be a lot of saints' days in November and December which require celebration with fish if not with meat and with wine, always with wine. I'm going along with it because I like fish, and vegetarian food, and wine if I must, and I can always have ham sandwiches when I'm out at lunch time. However I'm not going to take the food bit any further now that Advent has begun even for us lazy Anglicans.

I am going to try to do something that may prove even more difficult though, if a lot healthier and better for my mind and soul.

On the Sundays of Advent I'm going to try to fast from the Internet.

I'm cheating and writing this on Friday (I'd never have even attempted the NaNoBloMo stuff if I hadn't found the post scheduler) so you won't know if I'm managing it. I expect my family and the cats will and will start to beg me to go on-line when I become unbearable and start twitching by 10am but I'm going to give it a go. I've started by not putting any links into this post. That was hard enough.

Priorities

2011-11-26T00:29:00.001Z

By mid November I had already bought and wrapped most of the Christmas presents for the family. On the other hand I hadn't bought any presents for people living further away, or any stamps with which to post them, or indeed returned a book that I'd borrowed in June. My priorities in the Christmas preparations were skewed if well meaning.

It can be the same in all aspects of life. Sitting wrapped in my duvet watching the F.E.A.S.T. conference I guilt tripped myself as to whether I should really have been there supporting Laura and all the others or turning the computer off and cooking dinner. Half way through Dr Thomas Insel's talk I KNEW that it didn't matter if I did neither (my husband was cooking the dinner, otherwise I would have at least have had to buy in ready-meals) what mattered was what I DID with the information we were getting.

Boxing Kangaroo

2011-11-25T00:42:00.002Z

My picture of a boxing kangaroo was commented upon again today. It pleased an Australian which pleased me.

I started using it after getting inspired, energised, enthused and downright infuriated at a conference over a year ago. The "incorrectness" of it was deliberate. I have been greatly helped by the work of Prof Janet Treasure and her team and actually quite like the animal models but I came back from that conference convinced that a bit of kangaroo parenting wasn't a bad thing and that some of the ideas being pedalled were so wrong that a bit of violence was justifiable.

No doubt the good professor would be horrified. No doubt those who hold strongly to the belief that environmental factors (in the sense of parenting, early experiences, media etc) cause psychiatric problems would feel vindicated in their judgement that with parents like these no wonder people have eating disorders.

But before boxing kangaroos like me are judged maybe it would be a good idea to ask WHY we are so angry. Before despairing at a parent acting like Chicken Liken maybe we could ask whether there might be any reason to make them believe that the sky MIGHT just fall in. Before calling a parent a tiger maybe we could ask whether anyone told them to act that way.

On a roll

2011-11-24T00:20:00.003Z

with the cheating re-posting. Here's another one.

This post from Laura is very interesting to me. Her question is Is the Science Depressing? I don't think that it is at all but what there is of it is pretty bewildering. Also, despite the well made point in the comments section about the direction of some of it, I don't believe there is nearly enough of it either.

By your re-posts shall they know you

2011-11-23T00:19:00.000Z

Keeping up a blog post a day is difficult and I've had to add fillers and re-posts as well as long navel gazing rants. Re-posting has been easier than it might be as the blogosphere has been so full of wonderful posts and there are a lot to choose from. Many have found this to be one of the best. It happens to trigger the worst of my evidence based guilt and send me into a complete jelly-fish but since at this very moment I am posting elsewhere about denial and the need to face up to our fears, here it is again FOR ME MUCH MORE THAN FOR YOU.

Local Culture

2011-11-22T06:50:00.000Z

I am fortunate enough to live in a very cultured town. We have a good local theatre, a cinema, several festivals, award winning gardens and enough choirs to sing something different every day of the year.

I appreciate them all I really do. I was fortunate enough to be able to afford (just) to go to the opera last Saturday. Madama Butterfly was exquisitely performed in the newly refurbished splendour of the theatre and a good, and thought provoking, time was had by all.

I think however that if all I had been able to afford was to walk through town with the god-children admiring the Christmas lights that would have been enough. They are no different from last year. The town council has probably been debating long and hard whether light bulbs should be replaced and Santa should be paid in these recession hit times, but they are art and they are appreciated by us and by many.

Family

2011-11-21T00:42:00.003Z

I was very tempted just to re-post Cathy's blog about families and AN because it is so good. However Charlotte has already done it and it really would be cheating to re-post a re-post.

Anyway, I do have my own ideas on the subject, which have just been enhanced yet again by members of my younger daughter's adopted family.

The literature does NOT support the idea that a one size fits all approach suits all families. The very article that Cathy quoted in her post states specifically that families should usually be involved in treatment but "Exactly how such involvement should be structured, and how it will be most helpful will vary from family to family". What the literature usually means by "family" does, though, stick to a rather rigid framework.

Cathy was specific, she referred to parents. Most manuals and therapists don't, but that is largely what they mean. They'll bend the formula slightly to accommodate a number of siblings or none, they'll allow for the fact that some parents live together, some apart. They'll even occasionally refer to grandparents if the families they are working with are so odd as to make use of the extended family, but "Family Based" usually means the parents and the child.

There are good reasons for this. That is the situation that most patients live in. Children usually live with their parents. Parents usually care for their child even if they're not very good at showing it. Disrupting that natural pattern of life whether because of beliefs which pathologise the parents or because of the lack of safe alternatives is expensive, distressing for parent and child and doesn't have a good track record of working.

However, and this could just be because of my evidence based guilt, it really gets me when this view of family is simplified and narrowed and nothing else is allowed. This can happen in treatment and certainly happens in the illustrations of the manuals and in those twee "illustrative stories" that are such favourites with some authors. "Each week brought a new challenge to the parents' teamwork" is still my least favourite quote from a self-help book, even though I do know that the book is very useful to many and that the author is a simply brilliant chap.

This is where my daughter's other family come in. We struggled mightily with FBT and made many, many mistakes. Our saving grace when it came to the effect on our younger daughter was our neighbours who gave her a safe haven, and their children who have been acting as her therapists ever since.

This family have become Christians and now regularly attend our local Baptist Church. One of their cousins was baptised today. As an Anglican I have no problem with Infant Baptism. I believe that the Sacrament is as valid whether performed for a graduate in the River Jordan by an Archbishop or for a premature baby in a kidney dish by an emergency care nurse. The gift comes from God and doesn't depend on the recipient. I also happen to think that the graduate will need just as much support to sustain his or her faith in the years to come as the baby. The main difference tends to come with the attitude of the recipient at the time. Nothing is expected of the baby and it is taken as a given that his parents and god-parents will have to do the nurturing. In adult baptism the candidate often expects to go it alone and talks only of his relationship with God. Not so with S. His testimony was full of thanks for his family for their support on his journey. The main difference between him and the premature infant was that in his case it was his cousins rather than his parents who had chosen this for him and, had the minister asked who it was who was bringing this man to baptism, one of the sponsors would have been 4 years old and others not a lot more.

I for one would like to see a broader definition of "family" in more places than the local Baptist Church. The families I "meet" on-line come in all shapes and sizes. One of the most powerful advocates for family based treatment I have ever met isn't talking just about two parents working together to help their adolescent child but regularly thanks her grandchildren and her cat for being part of the support team.

Here's to the family - all of them.

Friday as a day of rest

2011-11-20T04:22:00.003Z

As someone who treats Thursdays as her main day for Churchgoing, it's perhaps not surprising that I would take my day of rest on a different day entirely. However I don't usually take it on Fridays.

This one was different as I had a small medical procedure for which I decided to take a sedative. I'm not keen to do so again unless absolutely necessary as I like feeling awake and in control, but being as I had to take the day off anyway it was nice to take a day out and to have the ability to feel guilty numbed along with any pain.

I spent the day with Parsley the cat. He never needs sedatives as an excuse to rest.

Stir Up Thursday

2011-11-19T00:09:00.105Z

Stir up, we beseech thee, O Lord, the wills of thy faithful people; that they, plenteously bringing forth the fruit of good works, may of thee be plenteously rewarded; through Jesus Christ our Lord.

The Collect for Little Fishes on Thursday. OK, we don't usually have a collect and we are supposed to be following the modern Lectionary but I'd made a mistake and we celebrated Christ the King a month early in October, so this Thursday we used the old book ready on the Altar for the 11am Book of Common Prayer Service and started getting stirred up.

C&D, both being nearly 3, have grown into their roles as the big boys of the group and performed them perfectly. They didn't take any prompting to play "sleeping bunnies" when we sang Away in a Manger in preparation for Christmas or to bang their tambourine's with enthusiasm and even anger when we sang We Have A King Who Rides a Donkey, for Easter. They stirred the biscuit mixture very well too and pressed it into Pudsey Bears for that traditional secular British pre-Advent festival of Children in Need.

Meanwhile out on the Internet, friends were stirring themselves against injustices and getting angry at misinformation. They were also sharing each other's joys and sorrows in what happened to be one of the most intense days for the group in a long while.

It was with these two groups of people in my thoughts, the young and wise acting on the traditional words, and the middle aged raging via modern media, that I set out with my friend Sandra for what has become the traditional start of our Advent preparations. We went to Worcester to hear Martyn Joseph sing at the Huntingdon Hall. The Hall is an ideal venue for Martyn's music. It is a converted chapel with most of the original features preserved so it has a reverend but never stuffy atmosphere. It is warm but not comfortable (either in the sense of being twee or in the sense of having seats that are anything but painful). Martyn did not disappoint. He stirred up all sorts of emotions with well worn favourites like Cardiff Bay, Proud Valley Boy and Thunder and Rainbows, a couple of new songs and yes, we'll admit it, by looking much better in jeans than a man of his age has any right to do. Many of the songs played directly into the Advent theme. I Have Come to Sing, On My Way, So Many Lies and Change Your World were all sung as Sing-alonga-Martyn and could all have summed up the mood. However, for me, the song that had just the right mix of thoughtfulness, hope, longing and anger was Yet Still This Will Not Be.

The broken hearted WILL ROAR but for this to happen people will need to be stirred up hugely so it bears repeating

Stir up, we beseech thee, O Lord, the wills of thy faithful people; that they, plenteously bringing forth the fruit of good works, may of thee be plenteously rewarded; through Jesus Christ our Lord.

A maths test

2011-11-18T00:01:00.001Z

This looks like something from Maths in the lower school taught by the unfortunate Mrs O'Neil but believe it or not I am really trying to work it out

There will be 9 of us for Christmas. Some will be working and some will be elsewhere during some of the meals. Some will watch the rugby and some will watch the Queen and some will avoid both. No doubt some will be polite at all times and some will find that impossible.

Whether they like it or not EVERYONE is getting a stocking and everyone will have comparable presents in those stockings to avoid fights.

Father Christmas not being terribly flush is doing most of her shopping in the Lower High Street and today set off for Poundland. While there she bought presents and a pair of glasses for herself. The glasses are not included in the present haul and the total came to £8. How many people are missing presents?

The answer is ONE. How can this be?

I actually know the answer to that and my husband got it pretty quickly too. What I can't work out is who that one is. I'm going to have to go and wrap and label the presents in order to find out.

Martyn

2011-11-17T00:19:00.004Z

I'm going to see Martyn tonight - not that Sandra and I are boasting or anything.....

Perspective

2011-11-16T01:00:00.004Z

I know that the way things seem depends too much on the way I am looking at them.

I met two members of the Church I used to attend 10 years ago, one at the beginning of last week, the other at the end. Unlike Batty Matty, I didn't stop going to the Church because I didn't find comfort there - far from it, the clergy and congregation, most particularly the Priest and the Deacon who I happened to meet last week, were remarkably good at understanding. I stopped going for more practical reasons because the clergy and congregation in my more local Church became able to offer that prayerful support nearer to home.

I wasn't surprised that these dear people both asked after me and mine and seemed to genuinely want to listen to the answer. I was not surprised that it was easy to talk to them and that I was pleased to be able to reply.

What did surprise me, at least with the perspective of hindsight, was the different answers I gave.

They didn't ask particularly different questions. They aren't very different people - both warm and approachable. The situation they were asking about hadn't changed in the five days between the interviews.

No, I realise now that my description of the way things were and my real true feelings about it depends far too much on my hormonal status.

My perspective of the F.E.A.S.T. Symposium wasn't coloured by my hormones (right time of the month, what careful planning on their behalf!). It WAS affected, quite literally, by the way I saw the conference. I sat at home wrapped in my duvet watching via livestream. I am deeply grateful to the person who set up and managed the livestream. We got a very good view. This was particularly the case with the talks and is why I could start raving about Cynthia Bulik and debating the words of Thomas Insel before they had even sat down. What I didn't get such good view of was the debates as the camera can only concentrate on one person at a time. Therefore it is particularly wonderful to have the perspective of bloggers who were there. Of course Laura is going to tell us all about how it was for her and I for one can't wait for her views, but other writers are already sharing theirs and helping all of us who couldn't be there in person. I would particularly like to thank Jen and Katie who have both written so well. It's not as good as being there, but it's very, very helpful. Thank you.

Half way there

2011-11-15T00:27:00.003Z

Yes, this is cheating but how else am I going to manage to say something EVERY day in November?

The Way Ahead?

2011-11-14T00:14:00.001Z

The F.E.A.S.T. conference was entitled "The Way Ahead", yet so far when I have burbled about it I have talked at bit about where we are now and a lot about my past, the sectors' past, and past reflections on the past.

So where are we going and how do we get there? Hopefully we're going to a place with better knowledge and many more options. How do we get there? Well one of the speakers was the remarkable Ruth Sullivan pioneer in the field of autism. According to Jen, who was there and who has provided some fascinating and detailed posts on the conference, important pointers as to how to get there are as follows

work to avoid infighting
define common ground
take a stand
obtain training through, e.g., the Eating Disorder Coalition on how to influence Congress and other federal agencies
contact state and national legislators
ask for what you want and work with other ED organizations to say it in the same way
involve celebrities (Dustin Hoffman, Rainman (autism) and Glenn Close, Bring Change to Mind
develop a forceful and attention getting PSA
continue to research the data and the science
demand better quality of care
invite legislators to meetings, to breakfast
work to agree to disagree and still talk
respect the dignity of others

They sound like a very useful set of markers on the map to me.

More Guilt

2011-11-13T12:43:00.073Z

Guilt appears to be bred into British women - I myself blame my mother for my maternal guilt but then again I expect she can blame hers.

Charlotte who has only been blogging for three days, has already included a post on guilt . And her an expert carer too. She ought to feel, em, err...

It is true that wallowing in guilt is unhelpful but it so easy to do.

I felt uncomfortable at the Remembrance Sunday Service today because I hadn't done anything to prepare for it (except buy a poppy) and disliked the vaguely nationalistic tone of it but had no useful suggestions as to what to do instead. My immediate reaction that "it is not my fault that I was fortunate enough to be born into a relatively peaceful society only 50 years ago" then struck me as defensive in the extreme and almost set me off on a complete cycle of self-blame.

I had similar feelings last week when I attended my dear god-daughter's testimony service at another Church, and was welcomed to eat with their congregation afterwards, but missed her actual testimony after standing in cat sick. We then went on to the fun afternoon service at the CofE to eat cake, but after all that religion and food decided not to do Evensong where god-daughter should have been singing. Should I have got to her testimony on time? Undoubtedly. Should I have declined the food when I hadn't been there for all of the service? Well that might have been rude and they didn't seem to mind. Should we have waltzed into the fun service with cake when we knew it would make us too tired to work at the evening service? Well, god-daughter is only 10 so she SHOULD be able to have fun but I did feel guilty about the effort put in by the rest of the choir....

In case I am tempted to look at my guilt and decide that it is Catholic in nature and only for Sundays a quick look at the rest of the week confirms that I can easily "go off on one" about all sorts of other things. Should I have talked to a friend or helped my daughter to ice a cake? Should I have allowed the god-children to have fun playing with my shoes for longer or chased them out of the house for the sake of hubby's peace and quiet sooner? Should I have concentrated entirely on the work at hand at work or paid more attention to the people around me? For the F.E.A.S.T. Symposium should I have been there to actually do the work with the many parents who did, and to support the wonderful Laura to make it the success it was, or should I have resigned myself to the fact that I wasn't going and looked after the people at home instead of spending hours hunched over the computer screen tweeting at Mary?

I could waste hours on these kind of guilt trips and then I would have to feel guilty about wasting the hours..............

I think I'll go and phone my mother and see if I can find out where she went wrong in my upbringing, except that would be cruel and heartless to an old lady..... I'm not going to win on this one am I?

Remembrance

2011-11-12T00:00:00.015Z

My family are fortunate not to have been devastated by war. Although both grandfathers served during World War II and men from my husband's family were conscripted along with their friends, they were not injured in body although I am sure they bore some of the mental scars for the rest of their lives. Likewise, those few of our family who have been involved with the services since that war have been fortunate too.

So when I observed the two minutes silence, in the supermarket along with all the customers, children included, I couldn't honestly say that I was remembering the fallen in anything but the most general sense.

The people that the silence did prompt me to think of were those who were, or are still, involved in The British Legion or other similar work. Dear Douglas our Priest who used to conduct the village Remembrance Services with such dignity and passion. The old men who stood there with their medals like a rank of Corporal Jones' from Dad's Army remembering their young brothers and cousins and friends. The elderly bugle player and the proud young boyscout who replaced him when he could no longer play. My father whose military service stretches to no more than an undistinguished time messing about during National Service but who works tirelessly every October and November to coordinate the Poppy Appeal. Pat, who, younger than my father, not only sells the poppies but represents the Legion at services and talks. The staff at Waitrose who were coordinating today's silence.

Remembrance day is important and anything important takes work. I am grateful for all of those who have, or do, or will in the future do that and other valuable work.

The history of the history of the..

2011-11-11T00:54:00.001Z

The first talk at the F.E.A.S.T symposium concentrated on the history of parental involvement with the treatment of eating disorders.

The last has been described as historic.

It was, although what happens from now on will depend on what those hearing the message do with it which is enough to blog about for the whole of the rest of the decade.

However, really, anything in the least bit important is historic, both in terms of what it might lead to and in terms of what it tells you about where you are now. History is the study of the past through the written word but, as any modern schools curriculum (or is this now terribly dated in the era of freeschools and Michael Gove?) will tell you, it is a lot more than that.

At any given point written history probably tells you more about the time and place it was written than the past it is reflecting upon. This was obvious in Dr Lock's presentation - after all he was presenting to a load of parents about how parents had come to be blamed - if he'd said that that was just fine he'd have been lynched. Likewise this piece wasn't written with carers in mind - nobody had carers in mind in 1977. Parents were to blame for most of the ills of the world and Philip Larkin was regarded as an authority on the human condition. If it had been it would be more dated by now as the piece preceding it is. Richard III was a source of endless fascination to many, me included, in the 1970s but is far less likely to have a TV show made about him these days.Without reference to parents, those horrible, hateful people who would have been accused of never understanding, it is actually worryingly modern.

So what will the reflections on history of 2020 tell us about what we have done from now until then?

How Dare You?

2011-11-10T00:56:00.000Z

hesitatingly, with unsure step, I dare because I have to. There is no other option.

Why shifting paradigms might be difficult

2011-11-09T00:15:00.002Z

I was asked a question by Anonymous when I stated in this post that I imagined that Dr Insel's questioning on what eating disorders were might be rather troubling to those who have been successfully treating the problem for decades.

I share Anonymous' view that no one treating eating disorders thinks they have found the holy grail of treatment and that the best people (and most of the rest muddling along like me) realise that there is still a long way to go and that much more research is needed.

So why do I think that Insel's view might be so troubling?

Well, if the person transcribing it for me got it right he said that we "are at the 2% level and there is an awful lot we still have to learn". 2%? That's hardly anything. Most responsible clinicians will want to get on and help the person in front of them NOW with the tools at their disposal now, but should they, if they only understand 2% of what they are treating?

The answer I'm sure will be "yes" because it would be irresponsible to walk away, but how?

Even now clinicians who believe that addressing the cognitive distortions of the illnesses is the way to treat it are being challenged by those who believe that the cognitive distortions are just symptoms which will go when the disease is successfully treated. Even now those who believe that the best way of treating the disease is to address the underlying causes are being challenged by those who are agnostic as to cause. Even now those who believe that eating disorders result from dysfunction in the family are troubled by those who see the family as the best resource for healing.

For the future how is a clinician seeing good results with a transdiagnostic model going to feel about being told that "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"?

How is a service designed around the premise that the average age of onset of an eating disorder is 14 and that the average length of time before the person seeks and therefore has any chance of getting treatment is 5 years going to adapt to the idea that even now, early identification and assertive treatment for young children has the best record of success and that in the future biomarkers may be used to identify people before there are any obvious symptoms.

How are those who are putting so much money and effort into prevention going to take the idea that we don't even know what we're preventing yet?

There are still so many questions - and yes, I agree, curious, clever, compassionate clinicians who are in the majority LIKE questions. But just sometimes don't you think they'd like a few easy, or at least easier, answers? I know I would.

PS The picture doesn't really work with the post or the title but it was so beautiful that I decided to use it anyway.

Some of the men I have been sleeping with

2011-11-08T00:15:00.002Z

When I was 10 I loved books. I'd go to bed and hide under the covers with a torch after lights out and read and read.

Being a bear of little brain it occurred to me only when thinking of time for this post why I managed to read so much after bed-time. I was sent to bed at 7. If only someone would send me to bed at 7 and do the housework (yes, and the blogging and the facebooking and general messing about on the Internet) for me, I'd probably be able to read a book a night still.

I do take books to bed. I noted in a self-help book that it was good to read children's books so I found my copies of the Chronicles of Narnia. Inspired by a quote from this diary I sought out a copy of Aneurin Bevan's In Place of Fear, feeling that as someone loyal to the NHS I should read of its history. Wanting to have more structure in my life, I went back to the Rule of St Benedict that I studied at University. Trying to help myself understand something difficult I vowed to read the works of St Paul. Realising that anyone who calls herself an Eating Disorders Activist MUST know the works of Prof Fairburn I borrowed a copy of his manual.

If I claimed to have READ any of these books it would qualify me for pseuds corner but as the title of the posts states, I don't read the books. I try to, I really do, but I open one up and then fall asleep. Perhaps tomorrow evening I'll do better....

Evidence Based Guilt

2011-11-07T00:53:00.004Z

The wonderful, marvellous, fantastic (can you tell I enjoyed her speech?) Cynthia Bulik spoke at the F.E.A.S.T. symposium of non-responders to evidence based treatment suffering "evidence based guilt". They've had the evidence based treatment, they've tried to "do it", they (or their loved one) has been among the 40% of people (yes, that's right, nearly half of them) who hasn't recovered. And so they wonder whether it's their fault. If the treatment is so good, if it works for others what did I do wrong that it didn't work for me?

Yup - I can identify with that - and make a thousand stabs at working out why I'm among the 40%, including of course identifying with and expressing the view that I AM in the 40% which just must "put the 'fluence" on recovery right?

Since, for reasons of finance and geography, going to Dr Bulik for treatment for my EBG, during which she could probably tackle my PTIF (Partnership Trust Inspired Fury) and Internet Addiction as well, is out of the question, I will have to try self-help and work though it here.

In order to do that I will utilise my Internet Addiction for the positive and keep researching. I have it on the absolute highest authority that one of the reasons why the success rate isn't higher is that work on identifying exactly what is being treated is in its infancy. Although this absolves me a bit, I can imagine that this may be rather troubling to those who have been successfully treating the problem for decades.

For all the Saints

2011-11-06T00:54:00.001Z

Like a mighty tortoise

Moves the church of God.

Brothers we are treading,

Where we've often trod.

We are much divided,

Many bodies we,

Having different doctrines, but

Not much charity

It's fairly easy to see that picture. The Church, being human, makes a lot of mistakes, many of them public, some of them dreadful. But being human it is also full of Saints who have within them that spark of the divine and even when their light is dim there is a virtue in plodding - ask my wonderful tortoise, Oh no, wait a minute you can't, she's underground for the winter. Well believe me if you did she would look at you with her one eye and ignore you and carry on plodding.

The All Saints Service I attended last week wasn't a revelation. It was alternative as far as the regular congregation goes and much division of the muttering type had no doubt taken place before it, much stress rather than charity was quite obviously felt by all in trying to get it right, but in general that stress was worth it. We were introduced to Saints - old ones, new ones, the usual stuff. We worked out that Saints loved God, that Saints tried to be good, that Saints would go to heaven (and will apparently eat cake there which is nice to know). We were also told that Saints get angry at injustice.

With that view of the communion of Saints I ventured into the rest of Sunday; a visit to a supermarket with a special Halloween attraction with the godchildren, a film with friends, time with both daughters, a family meal.

The film was The Help. It isn't everyone's favourite and I am not qualified to say whether it does the real stories of real people justice but it was alternately moving and funny. What shocked me was that those things happened in my lifetime. I could have been one of the privileged white children, indeed I was, although being English we didn't have "help".

The Halloween attraction was two owls from the Barn Owl Trust, booked by the supermarket's newly appointed community link worker to lighten the darkness of commercial Halloween and to allow the Trust to make a bit of money. The Godchildren were mesmerised. I was as impressed by their handlers as much as by the owls; young people who probably didn't have a lot of qualifications or a good school record but who cared deeply for their charges and were excellent at communicating that care to the passers by.

The family meal started a bit tensely, but we all enjoyed it in the end and we managed to eat up a few more of the hundreds of apples we have been blessed with this year.

So all in all it was a good All Saints Sunday.

Thank you to St Henry, St Sandra, St Carl, St Amy, St Linda, St Viola and all the other Saints for making it so.

Simply the best

2011-11-05T00:10:00.000Z

tweet your life

2011-11-04T00:27:00.003Z

I don't have a lot of experience of twitter. I have had an account for years but have only used it once or twice.

Today (I'm writing this on Thursday) I have been tweeting like mad. The poor, poor person who is reading the F.E.A.S.T. tweets (and no, I wouldn't blame them if they've turned it off) will have been overwhelmed. They haven't been angry tweets, even if the talk I started tweeting in did raise personal questions, just interested, inquisitive tweets.

But, personal, inquisitive, passionate... how the heck do you fit that all into 140 characters? I'm far too verbose for it I swear. According to my eldest beloved daughter "if Stephen Fry can do it so can you" and she has a point, but it takes some doing.

I do find it just a tad ironic that in order to get my head round livestream, twitter and some serious learning I have to shut myself off from the rest of the household and concentrate very hard on my computer screen. Family Based? Well they're around somewhere.

Ready, set, go

2011-11-03T00:19:00.006Z

Sofa

Duvet

PJs

I'm ready for the F.E.A.S.T. Symposium

Timing

2011-11-02T00:01:00.002Z

I am writing this while trying to work out the time difference for the F.E.A.S.T Symposium which starts, fittingly with breakfast, on November 3rd at 7am Eastern Daylight Time.

When originally looking at the schedule I thought that they would be 5 hours behind me but I find that, since it is now winter here but still summer there, they are only 4. This will make scheduling our meals somewhat trickier. I was going to have lunch at their breakfast, dinner at their lunch, evening snack at their dinner. Maybe I'll join them exactly now and be lazy and have a 4 hour lie in.

Either way I'm not going to stress about it. I can't control time but I can try to spend it wisely and forgive myself when I don't. Much easier than money which I don't think anyone understands at all!

November

2011-11-01T00:10:00.000Z

November

by Thomas Hood

No sun--no moon!
No morn--no noon!
No dawn--no dusk--no proper time of day--
No sky--no earthly view--
No distance looking blue--

No road--no street--
No "t'other side the way"--
No end to any Row--
No indications where the Crescents go--

No top to any steeple--
No recognitions of familiar people--
No courtesies for showing 'em--
No knowing 'em!

No mail--no post--
No news from any foreign coast--
No park--no ring--no afternoon gentility--
No company--no nobility--

No warmth, no cheerfulness, no healthful ease,
No comfortable feel in any member--
No shade, no shine, no butterflies, no bees,
No fruits, no flowers, no leaves, no birds,
November!

Actually, I quite like November but this is for all my dear friends who don't.

NaNoBloMo

2011-10-29T20:58:00.000+01:00

Be warned - I'm going to give it a go.

There should be a lot to write about with the F.E.A.S.T. Symposium starting the month with a flourish.

What right do you have to comment?

2011-10-25T21:12:00.000+01:00

A spiteful and very personal comment on a friend's blog questioning that person's right as a relatively privileged individual to comment on God's bounty, led not to defensiveness or the deletion of the post without comment as I'm sure it would have had it been here, but to a moving, reflective piece on the author's own failings and the Grace of God that allows her to get through despite them.

A recent discussion among the leaders of a group to which I belong also led to reflection on the necessary qualities for a mentor. As with the blog post I read with interest but did not comment.

As ME, mother, wife (hmmmmm, should one put them that way round? Now there's a question) daughter, sister, cousin, parishioner, employee, book keeper, IT expert (there's a laugh, I'm the one who kicks the printer if it doesn't work and then rings the IT bods if that actually makes it worse), gardener, neighbour, blogger I probably have no right to comment on anything much at all. With the help of friends I may learn the skills to do so calmly, constructively. By the Grace of God I may even learn when to shut up!

Greenbelt Post Postcript

2011-09-04T13:13:00.000+01:00

I never found any answers at Greenbelt, easy or otherwise, but almost by mistake at the Greenbelt Store I found someone who certainly knows how to treasure the questions.

Ann Morisey- very, very helpful talks indeed.

Camping with the folksong army

2011-09-03T23:20:00.002+01:00

This post is written with a musical soundtrack in the back of my mind. It doesn't have a sound track on the actual blog. The reason for this is technical. Although I could upload my video of the back of people's heads in the Christian Aid tent as Martyn Joseph sang Cardiff Bay (of which more later), it would be inadequate both as a reflection of Martyn's talent and as a backdrop to the post. I would need a whole album complete with concept cover to do justice to the experience of a long weekend, and while Maryn would feature heavily, he would be joined by several other artists and all would play second fiddle to a folding chair and a washing up bowl.

This year I was a lot more organised for Greenbelt than ever before. I packed a week in advance and I downloaded the programme almost as soon as it became available so that I could choose activities from the comfort of my home computer. This wasn't because there is a new super-organised me. It was part accident of timing. We usually have a family or couples holiday before Greenbelt and I have to gather clothes and tea towels from the washing pile to go. This year I packed for both at the same time as Greenbelt has been followed by a week in the Lake District with my mother-in-law. It was also in part because for the first time I was camping with others and I wanted to have things ready for sharing with the poeple who were kind enough to pitch my tent for me.

The first talks and shows I chose could be broadly described as on "social justice". I changed my mind a couple of times, was persuaded by a friend to see some things I would not otherwise have chosen and missed things that I fully intended to see just by virtue of bad organisation, but broadly speaking social justice was what I "did" at Greenbelt.

So have I come home enthused with ideas for the revolution, converted by trendy lefties to reading the Daily Fail, or disenchanted and hopeless in the face of the impossibility of change?

Actually none of the above.

There was a lot of good stuff setting the scene on the issues. I mainly concentrated on British subjects but my friend had a "Palestine Day" on the Monday and the exhibits around the site brought the troubles in the Bible lands to mind to all.

Richard Wilkinson advertised his talk by quoting an elderly Quaker lady who said that she never thought she could have so much fun with graphs. She obviously hadn't heard Walter Kaye, but his talk was indeed worth attention as was the debate on Friday about the Big Society and Billy Bragg's interview in The Rising. The fact that all this information didn't galvanise me into revolution wasn't really because it didn't give any pointers as to what actually to DO about all this injustice. True, the one talk I thought might give advice as to "where now?" was the one that I hated. Oliver James annoyed me greatly. I am willing to accept that this was in part because his views, particularly on genetics and the implications of genes for public and private policy were in direct conflict with mine. However I wasn't alone in finding his political as well as his psychological arguments facile and his personalised call to arms against the ruling classes just plain silly. For a start he seemed to be suggesting that they should be replaced by people with experience of child-care. Eh??

As I've said it wasn't the lack of a clear plan or the naivety of any that we were given that tempered any revolutionary zeal that I might have developed. It was rather that, as a whole, my experience of Greenbelt kept me, quite literally at times, grounded. As befits the title of the event my dreams, both during and after the festival, were of home and homely things.

Camping isn't a necessary part of Greenbelt particularly if like me you only live a few miles away from the site. I could easily have gone home each night to a warm bed. Instead I chose to sleep on the floor in a tent and to queue for the chemical loos each morning. As I said I CHOSE to do this. No one made me. I have chosen to do it in the past and have always enjoyed it and known that I should be grateful that I'm fit enough to survive the experience. This year though was extra special as I joined a small party. I didn't have to put my own tent up. Kevin and Bill from the Baptist Church did it for me. All I had to do was to swan in on Friday and put my stuff in it. It is a good quality, generously proportioned tent so I have never got wet in it but it is even warmer and more comfortable when put up the day before the event in the light by people who know what they are doing rather than by me in the dark on the Friday night. Being attached to a party meant company at breakfast, being made tea, sharing my washing up bowl. Memories of the festival will be as much of that slightly mouldy green bowl full of suds and tin plates as they will be of music and intellectual talks.

Then there was my chair. An impulse buy I had no idea whether this pink and purple monstrosity would be useful or an utter pain. If I had had to take it backwards and forwards for miles to the tent I would have thought it a nuisance but since the group leaders had pitched our camp at the very front of the site it was easy to take the chair to events at which it was needed and take it back to the tent when it wasn't. As in previous years I shared the planning and listening to talks with Sandra who is older, wiser and less mobile than me. Unlike in previous years her mobility didn't restrict the venues we could access because of the chair. The big top and the Centaur were equally comfortable and the smaller tents were no longer off limit. Sandra being more mature and better read than I am had a different slant on some of the talks. It was thanks to her that I did Richard Wilkinson at all and I blame her for dragging me to Oliver James. I persuaded her to see more of Billy Bragg than she would otherwise have wanted to. I had to agree with her that he was a little naive (if not that he was young) but in his Big Top talk on Jail Guitar Doors it was just that naivety, and the direct and joyous music of his co-presenter Leon Walker that won us both over.

So I didn't find any answers at Greenbelt. Not once did I think THIS IS IT. I did feel though as if I was being given powerful suggestions as to where to ask the questions. As the community from L'Arche acted in their first worship session (which I cried all the way through) the treasure was found at home.

Of course I wasn't at home and the very act of being at Greenbelt playing happy families with my god-children who I can give back when they get hungry or dirty and cross generational discussion with Sandra who is a lot nearer and age and experience to me than, say, my mother-in-law, meant that I was not there for my flesh and blood family (who seemed to do fine) or for on-line friends a couple of whom happened to be going through awful times that weekend. I hope that they will all forgive me and that I can use the Greenbelt experience to help me find what I can do, not necessarily to change the world but to be there and appreciate what I have.

Which brings me back to Martyn in the Christian Aid tent on Monday afternoon. It was a semi-impromptu gig and despite having been the one who found out about it Sandra didn't make it inside the crowded tent and had to sit on the chair outside. God-daughter Alice and I got second row seats and settled down to listen and take pictures. After two festivals in one weekend Martyn wasn't at his best and he didn't play any of the songs that Alice knew. That didn't stop her enjoying the experience as there was a girl of about 17 in front of her who reminded her of L, the young woman in the choir who she idolises, who was braiding her hair throughout the experience. This had Alice mesmerised leaving me with the opportunity to video Martyn. I got the first song and then a very long rendition of Cardiff Bay, the only song to my knowledge that Martyn played twice during the festival. As his triumphant finale in honour of Christian Aid and to galvanise his audience Martyn played Change Your World. I didn't get a single word of it recorded. My video phone ran out of batteries.

I'm OK with that. It just about sums up my Greenbelt and anyway some of my treasures at home have always seen through Change Your World.

Boxing Kangaroo

2011-08-21T13:52:00.000+01:00

I have chosen to write a blog post, rather than to update my status on facebook or try again to say anything useful on twitter, entirely because then I will get to show off my little picture of the boxing kangaroo. I want to do this partly because much of the good sense, kindness and inspiration I have benefited from this week has come from friends in Australia, and partly because I accept that it is my duty and my joy to nurture and protect those people for whom I have responsibility but I'd quite like to be able to hit a few people at the same time.

Ordinary Times

2011-07-15T08:42:00.001+01:00

There are times when all of life seems to be here, now. News of birth and mortality, examples of dedication and frustration, friendship, competitiveness, empathy, bewilderment.

Yesterday was a very ordinary Thursday. Got up, listened to the radio, went to Little Fishes, came home, had lunch, pottered about, took a few photos, played on the computer, cooked and ate tea, went out to see friends to try new hobbies (sewing for me, bridge for h), came home, fed the cats, went to bed. Mundane, sober, middle-aged stuff.

And yet, from the powerful and tear-jerking documentary on the radio onwards this was no ordinary day. Thank you especially to G and J for sharing some of it and for very much being part of it even though we never mentioned its specialness.

Make Do and Mend

2011-06-30T20:38:00.000+01:00

There's a lot of change about. Many people I know are changing roles, cutting their coats according to their cloth, making do.

It's going to be hard for most of us. It certainly wasn't part of my career plan to be the family wage earner in an admin job by the age of 50 and none of the others I know who aren't able to find or cope with work, who are desperately looking for the kind of work they might have thought they had finished with when a student, or who are losing their homes in the search for financial security are in these positions through their own choice. For most of us it's the economy stupid and I for one don't blame the teachers or the rest of my colleagues in the NHS for that one.

But this narrowing of choices and forcing of togetherness will be a chance, if we take it, not only to make do but to mend some of the holes in our lives and relationships that we haven't had time to deal with, haven't needed to face up to, haven't dared to look at. It's going to be hard, but in some ways it's good not to have any other choice but to get on and do it.

Animal Models

2011-05-29T21:41:00.001+01:00

I likened myself to an orang-utan this morning, and then spent over an hour looking like one with a five year old clinging to me like a baby monkey throughout a joyful but still fairly formal C of E baptism and communion service. At one point young A even inspected my hair for nits (fortunately not finding any).

I enjoyed the experience. It is a lot easier to clap your hands with joy in public when you are doing it with a child. The child was no more interested in the happy clappy music than in the serious anthem and both she and the man with dementia behind her were much more amused by my glasses than by the child-friendly sermon but her presence really helped ME to relax.

I haven't always been the earth mother type, particularly not when in that Church with my own children. When I was younger and less confident I wobbled like the jelliest jelly-fish when I got, or thought I was getting, stares for not having perfect children. I charged like the most aggressive of rhinos both when I thought my young were being threatened and when I thought they were threatening the peace and quiet of others. I must apologise to my children, and to those people who weren't giving them dirty looks and try to forgive those who were as not knowing any better. However I do also have to forgive myself for not being the kind of animal I enjoy being now - after all it wouldn't necessarily have been appropriate then anyway. It is an awful lot easier to be a monkey momma if you have a monkey baby who clings on tight - it's not a strategy that would work with a baby eel or even a kitten and after all we did also sing ALL things bright and beautiful ALL creatures great and small.

oh oh telephone line....

2011-05-14T09:10:00.000+01:00

Yup, it's the merry month of May when thoughts turn to making telephone calls. It's interesting though how the technology of doing so has changed so rapidly over the last few years. This doesn't exactly tell you much about the actual telephone being used but it IS a line which suggests a phone at least as old as this one. Sylvia's Mother was definitely not using the technology of 2011.

Today I have access to all sorts of vehicles of communication but it's still difficult to use them. Having a landline and a mobile and skype and MSN doesn't help if the person I want to contact doesn't have any of these or isn't prepared to use them. Both sides having the technology doesn't help if they don't know what to say. Making time for the use of educational media is impossible if there isn't any time to make or the media is under suspicion for being trivial
There are regulations around who can speak to who and where, when and how communication is allowed and sometimes these can frustrate the hell out of me, but they are there for reasons and tilting at them is a waste of time which I could spend watching You-Tube or trying to nudge other people to communicate for themselves - and next month is June which on all previous evidence will be a little better.

One big tea party

2011-04-30T20:21:00.003+01:00

On a day when half of the UK seemed to be celebrating with at least a nice cup of tea and very often with something stronger over in Miami Laura was hearing criticism of the very idea of a tea party.

Since the comment was a slip-up not meant for public consumption presumably we can't ask its originator exactly what he or she meant.

As it was made in America where tea-parties are very different from those in the UK I expect it was meant to refer to a strident attitude and a lack of liberalism. If so, then it was inaccurate as well as unpleasant, although in their zeal to bring about a revolution in what has been a very poor record in treatment and care my Maudsley friends may just occasionally look as if they are too near tipping some of the good ideas into the harbour along with the grotty old tea.

Had it been made in England where both tea and healthcare are different, it would have suggested that the problem with the movement wasn't stridency but that it was too weak and twee. In that case it might just about be justified, at least as applied to the way theories are put into practice, the way actual services on the ground support actual patients and carers. There's a lot of lip-service paid to "offering evidence-based care" (you try finding a service that doesn't claim to hold it dear to their heart) but when it comes down to actually offering real treatment to real people there are enormous barriers in place (including professionals listening to the symptoms of the illness rather than considering the needs of the patient) and the chances of any one patient getting the treatment he or she needs are about as good as your chances of winning something good on the village tombola. Likewise "including carers" is a very popular message from service providers but there is no consensus as to whether this inclusion should mean leaving them to organise the whole show with not a professional party organiser in sight, encouraging them to bake a cake and do a bit of the washing up but leaving the programme to others , or just including them as the token minority group representative in the publicity shots.

We've all had some lovely parties here in the UK. Even the cynics and republicans I know have joined in the fun and thoroughly enjoyed the spectacle and music and as far as I can see Polly Toynbee is in a minority of one with her miserable ranting, even if she does have a point that we have to look out for the future after the party is over and the bunting has been put away until the Golden Jubilee. The tea hasn't been very strong and conversations with neighbours begun over the barbecue will need to continue once it has started raining and the thorny questions of parking or leaving the wheelie bin obstructing the footpath have been broached. However it IS a start. Likewise my American friends are making a start with their challenges and tough speech.

What is needed on both sides of the Atlantic is for the conversation to continue, whether it started with a bang or a whimper.

You're not sick, I can't treat you.

2011-04-24T20:08:00.001+01:00

I have become used to personality disorders, drug induced psychoses and eating disorders not being considered mental illnesses in administrative terms.

A couple of days ago I came face to face with a young psychiatrist who believes that this is a clinically appropriate stance. As the person there to take the minutes, and as a mere carer (I did identify myself as such and they can probably look me up on their system to find red flags stating "trouble" although they'll probably find even more on google if they try hard enough) I couldn't argue with the point but I have discussed it with friends and one day I'll pluck up courage to talk about it with the GPs I work for.

The psych said that he was controversial with clients because although some of them were very pleased with their treatment others "didn't like being told they hadn't got a mental illness". He does not classify personality issues as mental illnesses citing the fact that they are not treatable with drugs as a rationale for this and the fact that "we all have certain personality traits...."

The trouble is, from his point of view, people with personality disorders aren't ill - they are just difficult! I believe that he will be proved wrong and that BPD (which is over-diagnosed and shouldn't be during re-feeding any more than bi-polar or anything else but which does exist) will be proved to be a brain disorder just like any of the others - however the financial and political pressure is on him to discharge such cases ("we don't want to medicalise sadness", "having a hard time coping is natural we don't want to pathologise you", "the mental health system is for people with diagnosable psychoses", etc etc. etc. ) If I had chosen this particular moment to mention anosognosia or the brain I'd have looked like Henny Penny shouting that the sky was falling in and if I'd strangled him there really would have been a lot of paperwork so I'm biding my time but the sky really doesn't look too good from where I'm sitting.

If it's not Barbie's fault, can we blame St Paul?

2011-04-21T13:33:00.000+01:00

I had the interesting experience of being asked to read St Paul's first letter to Timothy in public with my 10 year old god-daughter and her 11 year old friend. Their little sisters came along to join in the fun.

So there we were, all female, 5 of us young and impressionable, most of us with skimpy summer clothes on and none of us with our heads covered reading out the words of St Paul exhorting women "to be in silence.For Adam was first formed, then Eve.And Adam was not deceived, but the woman being deceived was in the transgression."

We only read it through once 10 minutes before appearing "on stage" but that was enough to get me hopping mad with the stupid man and his church. I know I'm far from being alone in this and that rational debate about the man and his ideas is perfectly possible,(many of the links I found when googling "St Paul friend or foe to women" were decidedly dodgy, it's remarkable that even today church buildings dedicated to Paul are more likely to be in "mission" as in poor areas than those dedicated to other saints), but honestly, what was I doing to the poor girls letting them read this stuff?

I don't think I did them any permanent harm. It was the King James Version and the language is sufficiently complicated for god-daughter A merely to be justifiably terribly proud that she had got through reading two chapters out loud to a small crowd of people which included a vicar, a doctor of linguistics and a professor of theology. Even her friend R who is older and a lot more academic seemed more interested in the debate about money than that on gender.

I do know though that conflict about gender issues in the Church has affected many people badly, but there's the rub. Is it the lack of validation of women or the conflict about it that's the problem?

Either way, it undoubtedly doesn't cause eating disorders or any other kinds of mental illness any more than children's toys, inadequate parents or the TV does. For one thing even in the most religious of households Christianity doesn't exist in a vacuum and the individual will have MANY environmental influences upon them, for another thing, illnesses, ALL illnesses, are multi-factorial and biology plays its part.

So St Paul can probably be let off the hook as the cause of all evil. I still don't like much of what he says, any more than I like some of the messages Barbie gives about realistic body image or my own more difficult character traits that are shared by my children, but it's what I DO with my feelings and reactions to him that's important - after all, he's not worried about what I think of him and I don't suppose it bothered him in the least that A's hair had lovely braids in it and I was wearing my golden flip flops.

The brain dear, the brain

2011-04-17T22:15:00.000+01:00

I really appreciate the work of Professor Janet Treasure and her team at the Institute of Psychiatry. I understand the doubts that many friends have about it but it wasn't developed for you, it was developed for the likes of me and mine!

Whatever the ins and outs of the exact methods of treatments the great lady herself has endeared herself to me forever by one sentence.When my mother and I were painfully trying to come to terms with a family member's struggle with AN, during this service the lady replied to our silly questions by stating simply that the difficult characteristics poor J displayed were a result of the effect of the illness on her brain.

It was so obvious, so sensible and so comforting to hear it.

And yet the term "brain disorder" is terribly controversial when applied to eating disorders. Many, many dear friends who agree totally with the biological nature of EDs baulk at the actual term "brain disorder" and when I mentioned the effects of starvation on the brain to an interested questioner in the street who thought it was perfectly reasonable to ask me what caused eating disorders (I HAD met her while I was advertising local support groups, she didn't just accost me out of the blue) she looked at me as if I was completely barking. What seems obvious to me, that an illness that can have devastating effects on the ovaries and bones will also have an effect on that most complex of organs, the brain, was totally incomprehensible to her.

In part this reluctance to consider the effects of the disorder on the brain can be a result of the terrible discrimination against people with learning disabilities and mental illnesses in the past. Because these individuals' intellect or rational thinking was considered "subnormal" it was considered OK to exploit them, to isolate them, to herd them into institutions or worse . Rather than suffer, or have their loved ones suffer, that kind of pity, discrimination or downright hatred, people try to find another way of describing the illnesses.

I understand this but I don't agree with it. I want passionately to sweep away those kinds of attitudes about people with all sorts of conditions both for their good and for the good of society which could do with a lot more people like my friend George. I don't think that asserting that certain illnesses are somehow separate from these "mental ones" will help do that, rather I think it will result in them being seen as choices rather than genuine illnesses and that even those who HAVE learned to treat those with other mental illnesses with respect and dignity will think that these others are deliberately choosing to be unhealthy. Unlike for Harriet Brown, it hasn't been my experience that the illnesses just affect people's ideas on food, shape and weight, although I agree, stating that the effects of starvation on the brain can be serious should never be an excuse for ignoring the wishes of the individual and attributing every piece of information given by the sufferer that the carer or therapist doesn't like to the disorder.

So, for me, the idea that the brain is affected by these illnesses and that study of these effects is hopeful and helpful is a comforting idea. For a start, the brain is a very plastic organ and healing and re-wiring happen all the time . I'm looking forward to the release of this book and am glad that this one is still around, although given the price of either of them I'm also quite relieved that we still have a library service in the county - just about.

Book Review - Brave Girl Eating by Harriet Brown

2011-03-20T22:29:00.001Z

As my Lenten reading I have decided to read the books piled up by my bedside before I tackle anything else. Two eating disorders books, a Ruth Rendell, The Gardening Year and Marianne Dreams are somewhat unusual Lenten reading, but I'm British and "Waste Not Want Not" is a favourite phrase around here.

The first book I've finished is Harriet Brown's Brave Girl Eating.

I really thought I might finish it in one sitting. It is excellently written and a compelling read. However it is also a distressing read, and having started reading it in a public place I was forced to stop when I started crying and hitting the table in frustration and self-pity.

I put it down and have only just managed to pick it up again. It is something that needs to be read in private but it does need to be read, if you are a parent, if you are a clinician treating (however rarely) eating disorders, if you are someone who just wants to know more about how people cope with difficulties in life.

Brown's story isn't ours. Our history of pre-morbid personalities and family life, and of experience of treatment, is very unlike hers. I don't share Brown's conclusions that eating disorders aren't mental illnesses and that they only involve distortions around shape and weight. Neither to I share her conclusions about treatment. I'm OK with the differences. I've given up waiting to find our story in print; to think "oh THAT'S how to deal with that emotion; great, they went through the exact same thing and made it to the other side: she's so like my girl: what worked for them will work for us......

Everyone's story is individual and one person's moment of revaluation will leave another cold, one family's response will be unthinkable to the next.

Her story isn't every-man's either. It is not one of those "helpful" vignettes slotted into self-help books in order to encourage and inspire. I am sure these have their use but they have always annoyed the heck out of me, which Brown's work certainly doesn't.

Brown's story is her own, sensitively, ethically and empathetically told but without pulling any punches. Perhaps because of the honesty, perhaps because of the excellent prose, perhaps simply because she isn't suggesting she has all the answers for others, I found it more helpful than hundreds of text books.

Three favourite quotes of mine are;

"It's like fighting darkness itself, a darkness that is inside my daughter, that is somehow part of her, to fight it feels like fighting her"

Of James Lock saying that "Families just have to accept that it's going to be hard" "I wonder what he or any other doctor imagines goes on at home in between therapy sessions. I wonder if they can have any idea of how hard it really is"

and the last comment which I adore

"We'll do whatever it takes to make sure Kitty gets well and stays well, whether she's eighteen or thirty eight. That's what families do"

They don't all do it well, they certainly don't all do it in the same ways, yes, OK some of them are probably SO screwed up that they just can't do it but I truly believe that most families really want to do it and could do with a lot more help not marginalisation or criticism.

Bl**dy Lent

2011-03-11T21:51:00.000Z

Two days into Lent and I'm struggling.

It's not that I've given up chocolate and am craving for it. I haven't and I'm not.

I haven't actually drunk any less wine than I would have done in a normal week either, as I don't often drink (unless I get led astray by visiting friends from Suffolk) and the communion for Ash Wednesday was over-catered and each sip given out was more of a gulp.

What has been so difficult has been trying to balance the temptation to see Lent as a time of gloom and dangerous self-deprivation with the realisation that if I let it it can actually be an opportunity for rest AND reflection.

I wasted the Ash Wednesday service worrying that it was unsuitable for 10 year old chorister and god-daughter. Since she was in fits of giggles at the sight of the Vicar with a smudge on his head I needn't have worried. It was a similar situation at the toddler service on Thursday where I force fed the children pancakes with increasingly shrill exhortations that they were NEVER to give up ANYTHING that helped them to grow. I doubt if many of the parents believed me when I told them that chocolate was very good for their children, but the children were too young to be bothered. OTHER PEOPLE, even those who I think of as being vulnerable are coping perfectly well with Lent, even a very busy one.

I need to learn from them.

Not to giggle through services or smear pancake on the floor, but to take things seriously and pause to include God in daily living. It's hard, not least because some things in daily living, both on an international scale and a very local private one are so utterly Godless, but the least I can do is to try. After all it IS possible to make something beautiful out of very odd things. This work of art is called "every move you make" - hmmmmm, I'm not proud of having found it when googling for a visual depiction of, well, googling, but I am glad I did. I'm not going to give up my Internet habit for Lent, but I am going to try to temper it, and to use it, try to make it into something useful even if it's never going to be beautiful.

Thank God that's over

2011-03-08T19:39:00.001Z

was, I'll admit it, my initial reaction to the end of Eating Disorders Awareness Week.

During the run up to it I had fully intended to post something each day on Facebook and to do something each day to raise awareness.

In the end, although I did post a few things, and got involved in a really good event on the Thursday, sometimes the fact that friends disagreed on the emphasis of some of the campaigning, the fact that practicalities and small frustrations experienced by others meant that some events could be seen as too little too late, and yes, the fact that I drank far too much wine on the Wednesday, meant that by the end I was tired rather than inspired.

I hope it isn't going to be the same with Lent.

My Church are reading the Bible for Lent. It will be such a shame if they get as far as Luke and, instead of looking forward to Revaluations are thinking "didn't Mark write about the same events, and why on earth did Paul have to write so many letters?"

Like awareness weeks and campaigning Lent can be hard work. I'm going to try and learn from my experiences with EDAW and hopefully make it worthwhile work. To that end, while I am going to have a go at reflection, hope to read at least one of the books recommended by people who know more than I do about prayer, and will make an effort to attend meetings and the BIG READ, what I'm going to try to do as my main "discipline" this Lent is to post one happy, joyful thing a day. Oh, and I'm giving up wine as well which should, in the long run, improve my mood.

Today I'm posting some of Jake Wildwood's music. Truly inspiring and joyful.

A Comedy of Richard III

2011-03-05T23:02:00.001Z

I very nearly didn't come to my own birthday party. It was a surprise you see, and in fact had it remained so it would have been not so much a surprise as a shock to those who organised it. I'd booked to see Richard III with a group of friends. I hadn't actually wanted to see the history, preferring the idea of the comedy but the history was the one that our group organiser booked, so the history was the one I was all geared up to go to.

On Wednesday hubby let on that there was a problem. Friends had organised "something" for the Saturday. What could be done? It turned out that swapping the tickets so that not only did I get to go to my birthday party but I also saw the play that I'd always wanted to see (a scream of a farce BRILLIANTLY done by the fantastic Propeller Company) was easy.

So on Thursday I went to the theatre, and today I had my party.

The event itself and the venue weren't a surprise. Hubby had even let on the identity of a couple of guests. One person I'd really hoped would be there but doubted would be able to was, and others really were surprise guests. The organisers were stressed, but happy and the whole thing was wonderful. I am very lucky to have such lovely lovely, friends and it was a joy to see you all.. Work colleagues mingled with neighbours, theatre group friends chatted with support group friends, Baptists and Anglicans ate pizza and purple cake with agnostics and atheists. It was ALL good but the best part of all was seeing my beautiful daughters dancing with my beautiful god-daughter and her sisters. Thank you to all who came and all who had nervous breakdowns in organising it.

If you can't say anything nice

2011-02-22T21:33:00.000Z

or relevant, or useful, or non-maleficent should you just zip it?

Inspired by the NEDA eating disorders awareness week slogan of "it's time to talk about it" I thought, I know, I'll do one thing each day of the week to raise awareness of eating disorders, one blog post, one letter, one personal conversation.

Yesterday was easy. I sent this to three organisations and put it on Facebook. No one has yet replied, so in case no one was listening I give it to you again because it is well worth seeing over and over.

But what to talk about today? How to do it? Kevin and Perry there do it so much better because they're not frightened of getting it wrong. I, like so many others, am worried that what I say will give the wrong impression, promote false or at least one-sided ideas, p*** off people who are otherwise friends. And anyway, what the heck do I know?

At least I'm not the only person who is having doubts about what the meaning of the week should be. The ever wonderful Carrie over at ED bites is asking the same question, and she and her friends have come up with varying, very useful answers.

Long and interesting words beginning with "A"

2011-02-13T10:16:00.001Z

If you are fond of the kind of quizzes that ask you to make the longest set of words possible out of the letters of "Amen", or are sitting a GCSE history paper on the Victorians (does ANY syllabus cover the Victorians these days or are they all on World War I?) then "Antidisestablishmentarianism" is a useful word. In any other context it is fairly redundant these days. It did have a brief flurry of use during the last government when it was felt that the combination of political and social reform might threaten the established Church. The present government seems to be far too busy disestablishing other things like the NHS and what's left of the welfare state to bother about the good old CofE, so it's rather fallen by the wayside again.

Another word beginning with A is used more often in the circles in which I move, although a straw poll of the general public would probably find it even more obscure than the first one. Anosognosia is an important but controversial concept in mental health.

The debate around it often reminds me of one of my other favourite A words. Adiaphora. A dictionary definition of it runs as
"The term adiaphora is the plural form of the Greek adiaphoron, which means "indifferent." The ancient Stoics used it to refer to things which they regarded as being morally neutral, neither good nor bad in nature.
Much later on, Protestant theologians also used the term to refer to things which were "scripturally" neutral, by which they meant neither forbidden nor required by the scriptures. There were, at times, serious conflicts among Protestant sects or between Protestant leaders regarding just what did or did not qualify as adiaphora".

I like to label many controversial things as Adiaphora. It is no doubt a sign that I'm conflict avoidant and a source of many of my problems. It is obviously a way of annoying the orthodox (a quick google of the word comes up with sites like this one using it ironically as a badge of pride against those who would dismiss their ideas) and has attracted less than favourable comments from people with more concrete views, including one I am married to. In my defence I am sure that my love of the word comes from having first learned it in history lessons where I was the token Protestant and most of my friends were Catholic. The idea that people like my best friend and I could burn each other to death over whether the concept of the bread and wine being the body and blood of Christ was literal or metaphoric was appalling. I grew to have admiration from the way Elizabeth I and her advisers ducked and weaved around issues that had broken other people and societies.

Of course, as the theologians found, it is easy to end up fighting about what constituted adiaphora and what isn't.

It still is, whether in religion or medicine, public or private life, thought, word or deed. I'll admit that there is nothing scientific to how emotional or attached I get to the importance of any individual subject. Whether I'll argue passionately (or seethe privately) about something doesn't depend on the amount of evidence for or against it, it depends on how important and relevant it is to ME.

In religion, whereas I can take or leave arguments about Baptism, I'll get passionate about the argument over women Priests. This isn't because I see the first sacrament as less important than the second, it's because people I love have happily disagreed on the first and got on with it to no apparent harm and a lot of enjoyment and partying, and people I love have been seriously harmed by living in an environment of arguments over the latter.

In the debate about public policy on eating disorders I agree totally with the sentiments posted by Laura and other friends here that Primary Prevention efforts (the kind of Love Your Body stuff) are largely misplaced and can even be counter productive. However since they haven't hugely impacted my own journey either way (I did originally type "our" journey, but I realise that this is only MY point of view not anyone else's) I can label them as Adiaphora. Issues of communication between, and access to, services have impacted hugely and even small lapses get me running to the Complaints Department.

All this means that I'm not really qualified to speak on what is and what is not Adiaphora in a clinical, scholarly manner. But as you may have guessed by the length of the post already, that isn't going to stop me putting in my two pennies worth.

So what about the other A words?

With the Church I used to place Antidisestablishmentarianism firmly in the Adiaphora camp. There are arguments for and against. Does it really matter? I'm coming round to the idea that I do subscribe to it though. After all, when the NHS and the welfare state are gone we may be grateful for one national institution which, at least in theory, has service to others as its second main raison d'etre Hooker's hard work establishing a Church that could "be there" and the efforts of all those Vicars of Bray (and those vicars of elsewhere who did it more honourably) to keep it going may be very useful to us today.

In health I think that the acknowledgement of Anosognosia as a factor is VITAL. It is often confused with Ambivalence, but to my mind that is giving far too much of an impression of choice. Acknowledgement that eating disorders are mental illnesses (or brain disorders by this definition, not by wilder more condemnatory ones) not choices, is so important. People are anxious, not avoidant, afraid not "acting out" and services (even if they do end up being provided by the Church not the State for economic reasons) need to acknowledge this. They don't yet. Even the best discriminate against the "non-compliant", discharge the difficult, try to get someone else to deal with the complex (or worse still don't try and just wash their hands of them). This makes me ANGRY which is not a long word, but an interesting one I feel, and hopefully a useful one used appropriately.

Yes, of course

2011-01-11T23:02:00.001Z

there are reasons why "biology" and "science" are sometimes thought of as dirty words.

This contains a good outline of why

as does this

Weird scientists experimenting on people, locked doors, isolation, institutionalisation, drugs.....

Yes, it can be abused. So can any power. It can also be used creatively, kindly, sensibly. Who better than a science writer to explain why and how

I know my place

2011-01-02T23:21:00.000Z

Not sure that I do, at least not in the Upstairs Downstairs sense, but there are limits, and opportunities and duties in most people's daily lives. Just having a bit of a problem working out what mine are at the moment.

More about Sir William

2011-01-02T12:38:00.002Z

My dear friend Mary asked me whether I thought Sir William Gull was ahead of his time, and why others didn't follow suit sooner.

I would say that he was very much OF his time which is why he became so rich, and possibly why he is only famous for all the wrong reasons. He treated the Prince of Wales and became physician to Queen Victoria. You can't get much more establishment than that. In the field of Anorexia Nervosa he was working at much the same time as Lasegue and there is some debate as to which of them deserves the honour of being the first to describe the illness. It tends to be that way with discovery, the technology, the general climate is there to allow for the deed and several people will alight on the theory or place at the same time. Perhaps the time was right for this discovery and he was just in the right place to do it.

So if the condition was named and the clinician treating it had some good ideas on what to do, why didn't people follow his lead?

I think the answer there is that they did. It's just that not all of his leads led in the right direction, and for many of the questions he was posing, the answers are still being debated.

Biographers list his famous sayings that are still pertinent now. I suspect he said other things that aren't recorded that would be considered outrageously outdated now, even if it was to complain about the high prices of fish at 1d a lb. Still, his sayings which have survived are very relevant. They are also still the subject of some debate. I think that my friends in the parent community will love this one "I do not know what a brain is, and I do not know what sleep is, but I do know that a well-fed brain sleeps well" but today just googling for the saying produces hundreds of hits about the amount of sleep a person should have before we even start on food or the brain. I myself ADORE this one "I do not say no drugs are useful, but there is not enough discrimination in their use" but I'm not sure that I'll have the confidence to quote it at the next prescribing meeting at work.

It's the same with his work on Anorexia. Even the name he gave the disorder is still controversial. I agree, it isn't that good a description, but people come up with a lot worse ones even now. He was living and working at a time of great expansion of the asylums. His work didn't conflict with the idea of institutional care. Patients were "put away" and great damage was done. On the other hand, what he was trying to do with his patients (re-feed them) WAS done in some of the institutions, was still being done a century later and even now may well be the most useful ingredient of modern evidence based treatments. Even if he isn't the sole claimant to the title of first clinician to describe the condition, he probably invented the "before and after photo" which Laura Collins has recently asked to be consigned to the dustbin of history. I agree, I hate it used in advertising, but what is appropriate in medical textbooks is different from what is appropriate in the pages of a magazine or on the walls of a clinic. He didn't make many suggestions on what to do after the immediate crisis had passed, but neither do many treatment providers now.

Sir William started things that are still going in several directions. Some of them were the wrong ones. Some of them now considered right will be proved wrong in the future. Some will be proved right. I'm grateful that he bothered to start.

Happy Birthday Sir William

2010-12-31T11:29:00.002Z

Today is the 195th anniversary of the birth of Sir William Withey Gull, First Baronet of Brook Street, Prominent Victoria Physician, Doctor to Queen Victoria and Governor of Guys Hospital.

I don't suppose there will be national celebration.

He might get a mention in 2016 on his 200th Birthday, but even then it will probably be for not being Jack the Ripper, rather than for his clinical work.

Unlike Edward Jenner or William Harvey, history has not been particularly kind to Gull. There is no Gull Memorial Hospital, although there is a plaque to him in the chapel at Guys. Whether that is because he really was unpleasant and self-seeking, because he was a self-made man the son of a barge owner rather than a mayor or a vicar, because he championed the unpopular cause of women in medicine, because he lost his mind in later years and it was covered up, or for some other reason who knows?

I for one think it may have something to do with the fact that his most important and lasting work was in that unpopular sector of medicine, psychiatry. Not that he would necessarily have seen it as being such. He established the term Anorexia Nervosa, in a paper delivered in Oxford in 1868 and the work he is now best remembered for "Anorexia Nervosa" in 1873.

Even in the unpopular field in which he left his most lasting mark, his name was last seen, not on a roll of honour, but being dragged into the waste bin along with that of various other has-beens in the field by none other than Daniel Le Grange, a trick he copied from Ivan Eisler who was in turn inspired to do it by Laura Collins.

With three such eminent detractors, why on earth am I picking him out of the bin again and dusting him down to have another look?

I'll admit it's partly national pride. As a Brit I object to my famous countryman being dissmissed so completely by Czechs and Americans.

It's also because I can't immediately see what he's said that is so, so, so very terrible. In a way I find it quite validating.

Eisler and LeGrange don't really agree on how much of his work to put in the bin. No doubt mindful of the dreadful hypocrisy of the Victorians and the awful things done in the name of "morality" in that period, Eisler was almost as against Gull's statement that "The treatment required is obviously that which is fitted for persons of unsound mind. The patients should be fed at regular intervals, and surrounded by persons who would have moral control over them" as he was against the observation about parents. LeGrange by contrast, presumably realising how hard it is for someone to fight this illness on her own, saw nothing much wrong with this firm stance. Interestingly Gull came to this late. It wasn't the automatic reaction of an authoritarian. In fact he can be said to be one of the fathers of patient centred medicine (or pandering to hypochondriacs as some of the medics of my acquaintance would probably call it). One of his sayings still quoted is "Never forget that it is not a pneumonia, but a pneumonic man who is your patient. Not a typhoid fever, but a typhoid man". He became popular with his patients, and rich as a result, because he listened to them. He initially tried to indulge the wishes of his anorexic patients too, it was only when he found that it didn't work, as we would say now, that he found he was actually just indulging the illness, that he changed his practice.

OK, but what about his anti-parent stance? Yes, he DID say that he thought families could be the worst attendants. For families who want to help their child, who know that they know their loved ones the best and that they ARE her best attendants, I can see that this would be unhelpful. I don't doubt that it has also led to a culture in various places where institutions, usually charging pots of money, take the child away from the parents needlessly and for too long. However it isn't a moral statement or a treatment recommendation. Admittedly it isn't empirically validated science either. It's just observation. It was his experience that, as a general case, provided she hadn't drunk too much and that Mrs Fairfax had remembered to pay her, Grace Poole was likely to proove better at re-feeding than either Adele or Mr Rochester. Unlike Lasegue he didn't make recommendations for parentectomies as a result of this observation, unlike Minuchin he didn't see this difficulty families had as in any way causal to the disease. He just got on with treating the illness in the manner he observed to be best. He had quite a lot of success, although I expect he didn't publicise his failures too much. In short, he seems to me to have been trying to do the best by his patients and where he failed in the most important maxim to "first do no harm" it was unintentional. His work HAS led to cruel behavioural treatments in institutions far away from families, but I don't believe that he wanted it to. He just wanted to cure his patients. If poor Sir William is languishing in hell, he got there by the most conventional of means, his intentions were good.

I'm not saying that it's OK to read work completed over 100 years ago and rest there. Things have moved on a long way since Gull's time and I'm very relieved about that. It's just that, given the context in which he was working, the background knowledge available at the time, old Gull seems to me to be rather a good guy. His successors at Guys and elsewhere are carrying on his work very much in his spirit I feel, seeking a balance between understanding the patient and persuing what works clinically. They don't always get it right any more than he did, but they try. They have a lot more resources at their disposal than he did and are hopefully making faster progress including working with families in ways that were literrally impossible in his day.

And so today, Sir William, I wish you a Happy Birthday. And to all your successors, Thank You, Best Wishes, Many Years, Keep Up The Good Work and a HAPPY NEW YEAR

It takes up a lot of your time

2010-12-28T16:21:00.000Z

The Internet, that is.

My mother-in-law made this comment when staying.

It wasn't meant to be complimentary although it wasn't made in an overly critical "you're not talking to me" manner either.

It's true. As a family we do spend a lot of time on the Internet.

Maybe SOME of that time might be better spent communicating face to face with each other. That can be more difficult than debating, discussing, reading here on the more anonymous Internet.

But face to face can be hard. For a start it can only happen when two people want to engage in the same conversation at the same time. Virtual communication can take place in real time, time delayed time, when you're ready even if it takes a while time. Things that are really difficult and require more than one deep breath before replying can be discussed in virtual time when they'd be too painful to tackle face to face. All sorts of people can join in virtual conversation and the normal restrictions of geography don't apply.

All in all, while I do think m-in-law is right to a point, I am very thankful for the Internet and all the friends and knowledge it has brought me.

I will break off from using it now though. I might use my time to speak to my family, although as they are engaged in the important occupation of watching "Chicken Run" I'm not expecting very meaningful conversation just yet.

Synchronise your diaries

2010-12-26T20:41:00.000Z

Ever since Father Christmas gave mummy a banana, he has been remarkably generous to me. This year he mainly gave soap. We're obviously a smelly lot. However he also spent quite a time sourcing Bobby Baker's Diary Drawings for me. I'd see the exhibition at Greenbelt and wanted to find out more. When it was jokingly suggested that I might want to find a picture of a clinician with an axe through his head, I knew I could find something even more violent and decided I would get a copy.

When it arrived I showed it proudly to a couple of friends. They were genuinely shocked. I suppose I should be too. Mental illness is shocking and this illustrates it in all its anger and violence and shame. The picture of the clinician, which isn't available on the web, is SO violent that I found I couldn't use it even half in jest. I rather like it though. The whole thing is raw and simple and very, very powerful.

It isn't uplifting though, and it isn't the kind of diary you can put in your pocket and record the dates of meetings in. I had thought of getting Father Christmas to buy me one of those as well, but he didn't need to. A dear, dear friend gave me the Speak Up Somerset Diary for 2011. It has uplifting and motivational quotes and pictures and it also has room for appointments and fits in my handbag. All in all it is a more useful as well as a more positive book. I wouldn't want to be without the other one though. It's perfectly possible to use both.

Twinkle Twinkle Little Stars

2010-12-25T13:36:00.000Z

On Thursday we "did" Boniface and the Christmas Tree at Little Fishes. It didn't go down very well with the children being either too young to understand or too excited about Christmas to bother. Making Christmas decorations afterwards wasn't too brilliant either. Only a few were made.

However, after the service and the delicious tea complete with marmite sandwiches, three of us snuck back into the church to put those few decorations we had made on the tree.

The church was silent, and unlit apart from the enormous tree which was clad in lights and sparkling decorations reaching almost up to the roof. We added our decorations in the nearest to silence that a 4 year old and a 6 year old can manage and gave thanks for all the goodness and happiness over the year that they represented. The congregation of St M's may wonder why they have a picture of Professor Janet Treasure on their tree. They'd be even more confused if they heard the answer "because I couldn't find a picture of Gill Todd". Other people and names will be even more unknown to them but they are important to me and/or the girls and thanking them publicly was important to me.

Thank you to all the stars of this year and previous years, and HAPPY CHRISTMAS.

May to December

2010-12-12T13:57:00.040Z

I've been thinking. WHY have I got this "thing" about May, when December can be as bad or worse?

It probably has something to do with expectations and having company.

Of course "the holiday season" is full of expectations and pressure, but these are felt by everyone. Along with the advertisements for the perfect Christmas which can be bought at a price from Sainsbury's or M&S there is helpful advice from people who know how difficult it can be and have put together survival tips, there is the company of friends who are also struggling with queues in the post office and what to buy for the in-laws even if we don't share exactly the same problems, and there is always plenty to do. Business may not be a permanent solution to problems, but it is a good way to avoid dwelling on them too much.

Looking back on Christmases past things have sometimes been OK, sometimes been frankly terrifying, but they have never been lonely. There has always been someone there for us, someone who deserves to have the star on top of the Christmas tree dedicated to them. In May we haven't always had that, or have had to look further to find them, and of course there's no Christmas Tree to put a star on even if there was.

So, to all those stars, past and present I thank you.

My mistake

2010-12-11T18:01:00.000Z

I had thought that the title of the last post might be a mistake. Indeed it has attracted one bit of spam, but that was filtered out so either it proves how effective the safeguards are here or that not even the spammers read my blog.

Either way, no disaster. Genuine friends have noticed the post. I have learned how to delete spam. All in all an effective learning process.

Hopefully it will be the same with my recent attempt at helping someone. I have very little right to help, only that of any passer by. I have only a tiny bit more of an opportunity to get involved. I took it and got it wrong. Initially I felt a bit of an idiot, but I'll get over it and, since it isn't clear who it was who had made the mistake I will have to own up and apologise. And therein lies my opportunity to extend my hand a bit further into the mud to help. Every mistake is a treasure, and this one is mine.

Getting Dirty

2010-12-09T21:14:00.000Z

We "did" St Nicholas at Little Fishes this morning. I hadn't thought I was on the rota so I didn't prepare with pictures or costumes which is probably just as well because I can't now be accused of hyping the children up about Christmas. Instead I re-told (with many inaccuracies) this legend

It is said that centuries ago St. Nicholas and St. John Cassian came down from heaven to earth to see how everything was going and report back to the Lord. Having finished their inspection, they were preparing to return to heaven when they noticed a farmer struggling to pull his cart out of the mud. St. Nicholas immediately said, "We should go help him out," but St. John Cassian looked down at their sparkling white robes and said, "I don’t think we should get our robes dirty." St. Nicholas, however, was already up to his knees in the mud, helping the poor farmer.

When they got back to heaven, the Lord looked at them both and sighed, but there was a smile in his eyes. He turned to St. Nicholas and said, "Nicholas, because you have returned to heaven with your robes stained with the soil of such a good deed, your feast day will be celebrated not once, but two times each year." And to this day we celebrate St. Nicholas, not only on December 6, but also on May 9. Then the Lord turned to St. John Cassian and said, "John, because you have returned with your robes devoid of any such stain, your feast day will fall only once every four years, on February 29."

Those children who were actually listening (OK, that child who was actually listening, they are all well under 4 at the moment) was very keen to get muddy, even if she didn't understand the analogy. If they have any sense, the parents will think it out in individual circumstances, and won't go plunging into every mud pool they come across in life whether there is genuinely a poor farmer in there or not - but today I am very thankful for those St Nicholas' out there who DO plunge in where they might fear to tread.

Nothing else to say

2010-12-09T08:42:00.001Z

But a lot to think about and probably quite a bit to do.

From Laura

Another preventable death.

Another family given the right information but not able to follow it through or even believe it because professionals in charge didn't know what they didn't know and there was nothing in place to tell them.

Another life lost, and a family stricken, and those who tried to help.... ravaged.

I am asking, today, whether eating disorders kill. I no longer think so. It is us. It is lack of action and anger. It is pride and professional courtesy. It is faceless invisibility of those who escape the fire but don't go back to pull others out. It is expediency and cost effectiveness and priorities. It is the self-protectiveness of exhaustion and the self-satisfaction of good fortune. It is boundaries, and insecurity, and lack of vision. It is feeling like a cog in a machine instead of the one link that can refuse to connect. It is helplessness and ambition and process.

It's not anorexia or bulimia. We do know enough about THOSE. If we chose to we could treat THEM.

For those who tried: you have nothing to answer for. The rest of us do, and will.

I believe.......

2010-11-14T08:32:00.006Z

In Evidence Based Medicine

I just wish I knew what it looked like and where to find it.

Many years ago I worked as a Registered Childminder. During that time, and for years afterwards, I would have a dream, usually when I was stressed or premenstrual. It always ran along the same lines. I would be pottering round doing not a lot when the doorbell would ring and a parent would present to collect their child. Cue a chase around huge buildings, through the streets, via boat, tram or train, to find the baby. I always woke up before I did.

Yesterday I had the same type of dream, but it wasn't the baby I was looking for. It was the Evidence. Together with an ever morphing group of friends, colleagues, treatment providers and family I chased round schools and houses, crawled through attics, ran along the side of a lake, caught buses, rode in a trailer.... all in pursuit of this elusive Holy Grail. We never found it.

If my faith journey is anything to go by, then I know where it is. It's with the baby.

I don't always find God in Church. At least 80% of the time when I recite the Creed I don't believe a word of it. Nature sometimes inspires me, sometimes it appears random and cruel. But always, always on the holiest of days (Thursdays you understand) I find God when worshipping with the children.

Saving the best until last

2010-10-21T17:02:00.004+01:00

NEDA was billed as bringing together families, people who have recovered from an eating disorder and professionals, and in many ways it did.

Just occasionally I found the format undermined the attempt.

There wasn't time for discussion at the main talks, and the break-out sessions were organised in a way that it was sometimes possible to get one whole room full of therapists and another whole room full of parents without much overlap. It was easier to catch Professor Treasure for a brief word at lunch than in a lecture and there were probably some professionals who never talked to a parent and vice versa.

On the other hand there were opportunities to mix. I went to two sessions on co-morbid conditions that were mainly aimed (I think) at professionals, and no-one threw me out. Clinicians were welcome to join informal parents' gatherings and several lovely ones including the beautiful Sarah Ravin did.

The best occasions for sharing though, were the two that specifically featured "service users" and professionals speaking from the same platform. These happened to take place in the last session of each day of the weekend.

On Saturday Carrie Arnold and Dr Stephanie Milstein spoke. Dr Milstein is incredible. A human dynamo. So enthusiastic, so knowledgeable, so talkative, so young. And Carrie? What can I say. It was an honour to meet this lovely lady and her equally lovely mother.

Their talk was, in a way, a reversal of what might have been expected. Dr Milstein did the family bit, set the scene and stressed how important family involvement was (and provided the most comprehensive and helpful handouts of the conference) then Carrie talked therapeutic techniques. Yes, they were the techniques that had helped her but they were very applicable to anyone listening. Carrie says it wasn't fun giving the talk, but it was fun listening.

On Sunday it was the turn of Harriet Brown and Dr Walter Kaye.

I'll admit that I had reservations about meeting Harriet. After all, she is a Maudsley Parent and I am an infamous Maudsley failure. She has written a book about her work to save her daughter, I am still working on the manualised version of how not to do Maudsley. I really thought that meeting Harriet would reinforce my own (unproductive and unhelpful) feelings of failure. I couldn't have been more wrong. Harriet was warm and genuine, but quiet and shy. Her story isn't that of super-parent coasting through this with ease. She and her family are having to negotiate the difficult waters of relapse and recovery during early adulthood. Her book recalling her story is beautiful and inspiring and incredibly well written. I haven't read my (signed) copy yet because I know that once I start I won't want to stop until I've read the whole thing and I'll need space in which to cry while doing so.

Dr Kaye had already spoken giving the results of the latest comprehensive study on FBT. The poor chap was probably exhausted, having come hotfoot from Boston where he presumably had done much the same to an audience of his peers. That didn't stop him. I hope it won't be considered rude to mention that he isn't in the same age group as Drs Milstein and Ravin. He's a world expert and has been doing this work for many years now and was presenting the results of a study which was the result of decades of preparation and work. So is he sitting on his laurels feeling smug? NO WAY. The first thing he said was that the 50% success rate observed in the trial (twice as good as the alternative) wasn't good enough and that it was necessary to continue working, studying, helping. He had no easy answers to questions, just a seemingly infinite enthusiasm for asking them and for working in research and care. A wonderful man doing wonderful work.

Craig Johnson 101

2010-10-20T23:04:00.007+01:00

This was the first post that I considered writing and the last to be completed. Therefore, although it started out as a response to Dr Craig Johnson's talk at NEDA, it is now just as much a response to local services, current concerns of mine and yes, distorted memories rather than true reflections. Dr Johnson (I think, see what I mean about distorted memories?) said at the time that the slides he had provided for the NEDA booklet weren't what he ended up showing and indeed, the ones in my booklet don't tie up entirely with my memories of his talk so I can't even go back and double check that I'm not putting words into his mouth that he didn't utter - but here goes anyway; Reflections on the talk that will probably be most useful of all to me in the next couple of months.

Dr Johnson stated that he had changed. He has moved jobs. He has certainly trimmed his beard since this, and he did indeed look somewhat uncomfortable in the pink tie which he said his daughter had insisted he wore.

He didn't explicitly say that he'd changed his views on the causes of eating disorders and the role of parents in treatment, but he did hint at it and he certainly did give a forward looking and positive talk during which he allowed (and got) questions from the floor.

He gave the most positive statistics of the weekend
"Expect A CURE
• 8 out of 10 will recover from their eating disorder
• The probability of recovery increases with cognitive maturation
• Evidence based treatments are emerging showing increased and
quicker recovery rates
• Prevention and awareness strategies are improving
• Research funding is increasing
• Our best discoveries are ahead of us, not behind us"

I disagreed with several things he said. In particular he described eating disorders as western phenomena which I don't think they are (at least I don't think AN is, there's a more cogent argument that disorders which involve copious consumption are more likely in a society where food is abundant) and concentrated rather heavily on the body image aspects of the illness for my liking. However as the talk progressed, and more and more as I have thought about it since, I have realised that THIS is the talk that I can take home and use - for me and mine, for "political" purposes, in my day to day encounters with the non-specialist medical world.

He stressed that EDs are mental illnesses, that the sufferer isn't "choosing" the behaviours, and linked them firmly with anxiety disorders which he explained are on the increase. Some awkward b*gger in the audience (yes, it was me) suggested that this might actually be just a rise in the diagnosis of anxiety disorders rather than the prevalence of them, but he made a good case for the idea that the pressures of modern society are greater than they once were on young people and that vulnerable young people need protecting from some of the stress of life as well as (most importantly) from the effects of starvation on the brain.

He went on to further explain his point about the probability of recovery increasing with cognitive maturation. He was specifically arguing that insurance companies shouldn't label people in their early 20s as chronic and treatment resistant because that was the time when, given the right help, they were actually most likely to recover. It made sense, although of course one could argue from the latest figures out that there wouldn't be as many people around in their 20s reaching that stage if they got appropriate treatment in the first place. There will always be a proportion though and it was good to know that he was thinking of them and was so hopeful. It was also interesting, and most enlightening, to hear that this brain maturation was a gradual process and doesn't end until about 25. That really rang bells with me as it's always been a real bugbear of mine that treatment can change so abruptly at the arbitrary age of 18.

I've already used aspects of the talk on one unwitting victim.

[Warning massive cultural over-generalisation alert]"Traditional" treatment means something different in the UK than it does in the US. While my American friends talk about traditional therapists talking to their patients about "root causes" while the patient starves, "traditional" here tends to mean strict behavioural policies, compulsory treatment in hospital without resource to TV, books, freedom, clothes, family... until the sufferer eats.

I had cause to be speaking to an older doctor. He has let on before that he thinks the local outpatient team is too soft, that they pander too much to patients who would be better off in a behavioural unit. I was able at least to explain that Dr Johnson had linked AN to anxiety and I think he was really pondering this - at least until I tried to link in Treasure, and CRT and far too many other things. I should have stuck with Dr Johnson, if only because there's nothing like having one's basic views backed up. He also was arguing for full nutritional rehabilitation, often within a setting away from home, as the first line of treatment even if I'm pretty sure that he wasn't about to suggest that taking someone's shoes away was going to help.

The other place I'm really keen to use the information is with our local specialist service if I ever dare talk to them again. It has always bugged me that there is such a dividing line between adolescent and adult treatment within the same service. We got a distorted view of it, slipping out of treatment when our daughter was 16 and crashing back in when she was nearly 19, but I'm not the only one who has commented on the "tick of the clock", where one minute the parent is responsible for all treatment decisions and the next the patient is. It's true, Family Based Treatment has the best evidence for adolescents, and CBT so far the best for adults, so it is at least technically reasonable for a service to say that adolescents who are dragged by their parents to appointments can suddenly be expected to be able to engage and want treatment and if they don't then there's nothing, unless they are so sick as to require sectioning under the mental health act. But personally I think that it is terribly unreasonable to expect ANY but the most motivated and, frankly, well, individuals to go through CBT without a lot of support let alone someone who is as developmentally young as an 18 year old whose brain development has been affected by an illness as severe as an eating disorder. Dr Johnson gave me the courage to argue that, at the very least, if services want to have a cut off date, it should be 25 and not 18.

He also gave me the confidence to take some of the valuable points on relapse prevention made by Stephanie Milstein and Carrie Arnold to our local "team" i.e. the GP.

In conclusion of all the talks at NEDA, though it wasn't the best, this was the one that gave me tools to go to professionals and ask for change. NOT as eggs to throw at them, or even as pearls to cast before them because they're not swine, but as tools to share in a collaborative manner expert to expert.

So it was a bit of a shock when I re-read the slides in the hand out and came to the last one. I don't know if I just missed this because I wasn't looking, or whether the good doctor never got to the end of his presentation because of the questions, or whether he ditched this in the final version, but I certainly have no recollection of it. It reads simply "FOLLOW YOUR TREATMENT TEAMS ADVICE". Apart from the detail obsessed reaction of "shouldn't there be an apostrophe in there?" for which I should probably go for treatment with Dr Tchanturia, I'm non-plussed. Eh? What if they don't give any or if it's contradictory to what you just said Dr Johnson? Does that mean I should shut up and leave it all to the professionals?

A couple of small conversions

2010-10-18T07:00:00.000+01:00

This was the first post I wrote. It was written without reference to later posts about treatment providers, without much pause for revision or reflection. Please take it as it is. The initial impressions of an alien looking in at the US system in confusion and wonder.

There was a lot to consider and think about at NEDA. Even Professor Treasure's talk which I thought I would have heard before was new and revamped, revised. Some of the other speakers were totally new to me and one of them changed my mind quite unexpectedly on two matters.

I have never thought much of Ramuda Ranch - all ponies and prayers. I hope saying this isn't going to cause an international incident. In fact I'm sure it isn't because I've already said as much to their staff on their stall at the conference, so if there's any offence to be taken then it will already have happened.

I have been able to take such a dismissive attitude to the biggest provider in the US because the situation here is so different. We just don't have 500 acre ranches available in our crowded island for treatment centres. The only place in the country where we could possibly have room would be the north of Scotland and there, in the words of my lovely late grandmother "the poor dears woud get terribly wet and cold" and I don't just mean the horses.

With one or two exceptions we don't tend to have Christian healthcare providers either. We have a State religion. Our queen is head of state and head of the Church of England but what that largely means to most people is that they can forget about God for most of the year and still have wonderful buildings in which to celebrate national and personal triumphs and disasters and clergy available to make suitably bland and comforting noises to accompany the services. We have church sponsored schools but not universities and anyone trying to put too much God into children or adults services is viewed with suspicion by anyone who isn't actively trying to do the same.

The vast majority of provision in the UK is outpatient and certainly the NHS fund inpatient only for the most severely sick and "residential" hardly ever. The Maudsley have a pioneering transition house which does some of the same thing but as far as I know the only other similar facility in our country is empty because no funding bodies will pay for the fees.

Therefore a Christian based residential treatment centre is largely a foreign concept. Those small ones that do exist are just that, small, amateur organisations that may be well meaning and even effective but they have no clout on the national stage.

I largely went to Dr Kevin Wandler's session on OCD and Eating Disorders because I was a little spaced out from the rather depressing general session that preceded it and couldn't be bothered to go and find another room for another talk. However I was surprised and impressed. He and his colleague gave a cogent, well argued cases history of a girl with severe OCD and AN. Their arguement wasn't "scientific" in terms of being the results of randomised trials but with the exception of Walter Kaye's presentation on the latest FBT trials, none of the other talks were either. This was observation of treatment and outcome, description of case history and theory. What impressed me was the understanding of the patient and the sheer amount of experience the clinicians had of working with people with whom religion was a normal part of life which could, in the presence of illness, be either a roadblock of a building block to recovery. For all the reasons stated about very few British clinicians ever mention it let alone have a wide experience of it to draw upon. As someone for whom the experience of faith and Church has been a factor in our story, it was refreshing to hear that it was for others too.

Armed with this insight I went on to Dr Craig Johnson's "Eating Disorders 101" talk. Like Walter Kaye Dr Johnson is going to get his own write up, but this part of what I learned from it was very much linked to the insights from the previous talk.

I didn't agree with everything Dr Johnson said but he answered questions throughout the talk well and with care. However the particular insight I gained came to me not during one of his answers but actually as I asked the question. He was talking about unhelpful cultural messages to the young about diet and beauty and I stuck up my hand and made the point about dieting and anti-obesity hype. Is is a point I believed in strongly up until that moment. I know of at least one child whose descent into AN was directly precipitated by concerns about "health" of what she was eating and plenty more who have felt that health and exercise have had a bigger impact on their illness than the beauty industry.

But eating disorders aren't just beauty or health diets gone wrong, or indeed religious fasting, or a lack of appetite while unwell or upset. ALL of these things can lead to dietary restriction and dietary restriction leads to the eating disorder in the vulnerable individual.

Maybe what we need is to identify those vulnerable individuals and protect them as much as we can, rather than to try and change the whole of life to eliminate possible triggers.

It would be a good idea to change the beauty industry and scrap the diet industry simply because it doesn't make ANYONE happy. The anti-obesity hype should surely be judged mainly on whether it actually makes any difference to obesity which is a health issue for many (in which it largely seems to be failing). OF COURSE ABUSE IN ALL FORMS SHOULD BE STOPPED. It would be great if all teachers and religious leaders were mindful of the vulnerabilities of their flocks; if Imams had more knowledge of the problems sometimes faced by children who are too young fasting at Ramadan and church youth leaders weren't quite so keen on sponsored fasts. But the public execution of Twiggy or the compulsory serving of MacDonalds in schools isn't going to do any good. We're never going to convince the Pope to come out and say that Jesus didn't really stay in the wilderness for 40 days and 40 nights and neither should we try. Even if all of society was careful and sensible, grandparents and beloved pets will still die, children will witness things they shouldn't, accidental injuries and illnesses will still make people too unwell to eat, truly healthy sportsmen and women will over-train once in a while.......

We will still need skilled therapists to work with people who develop eating, and other anxiety disorders whatever we do with society. They are out there even if some of them are hiding in places that seem rather strange to me.

When you're in a hole

2010-10-17T14:12:00.003+01:00

Janet Treasure and Kate Tchanturia gave excellent and well received talks. Good science by good people.

I did have a couple of times though when my mind wandered off topic slightly. The first was in Treasure's description of the anorexic "in a hole digging". Treasure's advice was that we, the public, carers, professionals must be the ones to get her out or she'll (and yes, it could be he, just using the feminine for convenience here) never get out as the nature of the disease means that she will just keep on going downwards. The analogy of the hole that I've heard before was slightly different - I walk down the sidewalk, I don't see the hole, I fall in but in this story it is the individual who has to get herself out and learn from the mistake. When you think about it, that's cruel. Anorexia isn't a mistake. It's an illness. The hole of AN is far too deep and the pressure of the disease far too strong in the downwards direction. Of course those around the sufferer must throw in a lifeline and teach her how to put it on.

Tchanturia's talk was about a particular therapeutic style which she has evidence to believe can be used with even those who are terribly sick with AN. She spoke eloquently about changing thinking and the way that the therapy is presented to the patients as "mind gym". She was an engaging speaker and made a convincing argument but I confess I got stuck on the detail and failed to see the bigger picture at one point. Se described starting the therapy with a patient with a BMI of 9. NINE. I mean what the heck kind of system allows someone to get so sick that they have a BMI of 9? I wanted to use this figure as a battering ram to get changes made NOW, but, as an activist rather than just a trouble maker, I should probably look at the bigger picture to work out exactly how.

I'm VERY grateful that Treasure and Tchanturia and Todd and many many others, some of whose names don't begin with T, are helping to design the ladders and rope pulleys to get people out of their holes and teaching others, parents included, to use them. It might be a good idea though might it not for some of the deepest holes to be filled in so that people can't fall down that far in the first place.

The "M word"

2010-10-16T19:01:00.005+01:00

One of the things that has changed over the last 10 or so years is the use of the word "Maudsley".

The Maudsley Hospital is a well established psychiatric hospital in South London. It is well thought of in its field, but its field (psychiatry) isn't a popular one among the general public and therefore it isn't exactly famous in its own land. My dear father, who has worked all his life in London and is more aware than most of local and national politics and history, trying to be helpful and to prove that he had been listening to me, asked of the EDIC conference "and will Professor Precious of the Marsden be coming?". For all I know there IS a Professor Precious at the Marsden and he or she is doing fantastic work, but if there is it will be in cancer not psychiatry.

However, the name of this fairly obscure hospital in London was described by the treasurer of NEDA as "almost a verb" in New York. I Maudsley, you Maudsley, they are Maudsleying.....? I don't think so. But it is true that there was a large amount of use of this word.

What did people mean by it?

Now there's where there was probably a lot of confusion.

What a lot of people meant was undoubtedly the research paper that had just been released showing that "Maudsley Family Based Therapy" is almost twice as effective as other therapies in adolescent AN. This manualised therapy originated at the Maudsley but has been developed, largely in the United States and has the most evidence behind it of ANY treatment for AN. However in Australia, in the US, at the Maudsley where they first developed the therapy, different forms of family involvement, different aspects of care, different models of delivery of the treatment are being developed to augment or even replace the manualised method. They are here in our local neighbourhood too.

Meanwhile back at the Maudsley, the team treating adults noted that there was a large subset for whom neither inpatient care or parents providing the same sort of care as inpatient seemed to be working. Professor Janet Treasure and her team noted that carers needed, and appreciated, extra coaching in the particular needs of their super-sensitive loved ones, and that the particular pre-existing conditions and cognitive impairments often seemed to come along with AN and needed addressing as much as the starvation which was perpetuating them. So, the New Maudsley Method was born, and flourishes, and is exactly what I myself needed even though it too doesn't suit everyone.

So, there's single family Maudsley or multi-family for adolescents and New for Adults? No, if only it was as simple as that. Multi-family trials, and indeed single family based treatment have proved very successful for some families of young adults. Clinicians elsewhere are using the principles with even older adults and having the partners, or even the children, of sufferers provide the care that parents do for younger patients. A recent trial of New Maudsley has proved very hopeful for work with the parents of adolescents.....

What does "Maudsley" mean then? For me, and only for me, what it largely means is an approach that sees families as a resource rather than toxic, that encourages and supports carers as well as the individual, that includes physical as well as psychological healing. But then again, that could be Marsden, or Moorfields or something to do with Professor Precious.

What a difference a decade makes

2010-10-16T00:00:00.000+01:00

New York is, totally understandably, full of reminders of 2001.

I thought that the conference might stir painful memories of the beginning of our ED journey which, coincidentally, at least officially, began in that year.

What was more obvious was just how much has changed in the intervening 9 years.

A lot has changed for me personally. In 2001 I was scared and alone with this, with no idea where to turn and willing to grasp at almost any straw. The treatment we were given then, state of the art and evidence based thought it was, did nothing to alleviate that fear and loneliness and actually inadvertently reinforced it. In 2010 I met friends in real life who I've known for years on line, and my husband and I were part of a joyous gang of parents, recovering sufferers, clinicians and interested others who ate and laughed and cried together and welcomed anyone who wanted to join in whether it was for an in depth discussion of one of the talks or just for pizza on the Promenade.

Some of the changes were more cosmetic than others and I'd be hard pushed to say whether I believed they were substantial. It is now fashionable to say that parents don't cause eating disorders, at least in public. However this can be followed by anything from "and they are the most effective agents for recovery" to "except when they do" and pretty much anything in between. I did however detect a real desire to change and to be seen to change among many for whom it might have been easier to stay the same. For me this was exemplified when one brave mother spoke up against the misinterpretation of statistics about abuse in Borderline Personality Disorder. I think the speaker really heard her, even if not ALL of the audience of therapists did.

Although it is still vital that "pure" treatments are compared against each other for scientific means, clinical teams are collaborating and adding components from alternatives that seem to work, assessing and comparing and developing treatments much of the time. Brain science is really "in" making perhaps unlikely superstars of Janet Treasure and Kate Tchanturia and giving us mothers a hero to worship in Walter Kaye.

Some of the changes might have happened naturally. After all a definition of insanity is doing the same thing over and over again and expecting different results. Clinicians working with each other, observing what was working and what wasn't should have made progress eventually, especially when guided by a few great leaders including the above mentioned, and indeed Dr James Lock who was honoured at the conference. Technology too has played a part. In a world where a boastful text home saying "I'm eating Eggs Benedict in Brooklyn" can be answered within seconds with a rueful "and I'm having a sausage roll in my car", communication of ideas whether trivial or life saving is a lot easier than it used to be.

For me, and for many others, it has not been the clinicians themselves, or the Internet, that has made the difference, but the work of one woman who has used the former to spread the word of the latter and done so with kindness, dedication and a HUGE amount of hard work.

Laura Collins and the other F.E.A.S.T members it was wonderful to meet with you again. THANK YOU for all that you have done to change the world of eating disorders. Yes, we have a long, long way to go, but thanks to you fewer people now travel alone, more clinicians are listening to parents, there is more hunger for knowledge among carers and a greater wish among providers to share it and there is a lot more laughter in a world that would otherwise bring only sadness.

A brief explanation

2010-10-15T23:28:00.002+01:00

Most of what I'm blogging about the NEDA conference was written at least a couple of days ago. Two posts were written on the Promenade in Brooklyn and one was written in the Diner where some of us ate on the Friday evening and where my husband and I breakfasted several times.

I'll edit them a little as I post them but I don't have time to fully review them so sorry if they seem out of sync with comments made or others' reflections (or even my own reflections well after the event).

I'm sorry also that they will tend to be general and not reflect the true joy of meeting so many dear dear people at NEDA. I haven't taken many photos of friends. This isn't either because I didn't appreciate meeting you - I DID, it was simply wonderful to meet so many friends from newer FEAST friends Lisa and Mary Jean and Colleen to dear dear "Louise", mother of the equally dear Carrie, who I first "met" on line in 2001. It isn't either because I value your privacy although I probably should and please get me to strike out your name if you see it and don't want to. It is rather because my camera is useless indoors and pictures just wouldn't come out. My writing style doesn't do justice to the joy that was meeting friends either so please think of this as the photos of the outdoors, the general impression of the conference, not so much the personal.

Am I an activist?

2010-10-14T16:32:00.004+01:00

The well worn joke about the US and UK being nations divided by a common language has some truth in it.

When one of the speakers at NEDA gave a eulogy to a woman who had worked tirelessly for "women of colour and of size" I am afraid my British ear was amused (don't be offended dear American friends) and all I could think was "what colour, what size? Green and small, Purple and huge?" Please believe me it's not that I'm narrow minded or wish to offend. It's just that we don't use these expressions in the UK.

The title "activist" isn't used that often here either. When it is, the "action" tends to be pretty strong stuff - chaining oneself to railings, egging politicians, at the very least writing thousands of letters. The activists lauded at NEDA had raised $millions, had manned helplines and offered a listening ear to zillions of people, organised offices and made thousands of cups of coffee, but I don't think any of them had made a nuisance of herself in a public place. Even Naomi Wolfe in her talk that was big on passion even if it was short on science (read Carrie and Laura if you want the lowdown) didn't seem to be advocating storming buildings any time soon. When she implicated pornography in the causes of eating disorders (I wasn't convinced) I was expecting a cry to attack press offices and tear down posters, but all she seemed to be advocating was educating girls that Barbie isn't real and perhaps writing a few polite letters.

Perhaps it is because my Great Grandmother worked with the Pankhursts, but, for me, the temptation to scream when things aren't "right" in healthcare, or education, or politics is so overwhelming - but is throwing eggs really effective activism? Isn't working within the system, making small changes along the way in a dolphin like manner much more likely to have lasting positive effect than charging at the body politic like a rhino stung by a jellyfish?

I came back from EDIC and changed my profile picture from a violet to a boxing kangaroo, so angry had some of the talks made me. I have returned from NEDA resolved to learn from my American friends. I am not a woman of colour. I probably am a woman of size but I haven't a clue precisely what size and have no intention of defining myself by it whatever it is. I AM, however, a activist. And I'm going to try to learn from the activists I met in the US to do it peacefully, persistently, one bite at a time - at least until the next time I see a good set of railings to chain myself to or find an egg in my hand when someone said something particularly enraging.

Reviving Marcella

2010-10-14T16:19:00.003+01:00

This blog has been dormant for some time. Blogging is less important to me and to some of my friends these days than it once was, and in general I haven't had time to write lengthy posts in the hope that someone might read them or that doing so might be cathartic to me. So "Marcella" has become somewhat redundant.

I'm reviving her now because she and I have been to the NEDA Conference in New York. I wasn't sponsored to go and have no "constituency" waiting to hear my thoughts on it. I sure Laura and Carrie will give better reports than I can do, and that more people will want to read them. However, for me, I wanted somewhere to reflect on this fun, fascinating, foreign and, oh blast, I can't think of another polite word beginning with "f"; challenging conference. I want to write down my thoughts on the talks before I forget whether it was Treasure or Kaye who said "x" and whether it was a talk on the first day or the second that really inspired me.

So I've revived Marcella to do it and the next few posts will be about NEDA 2010 and my reactions to it.

Tis the merry merry month of May

2010-05-01T17:54:00.004+01:00

and it has started well.

During the approach to the month I was worried that I was getting nervous just because it was May with all its memories.

It turns out that I was nervous because my child was jumping out of an aeroplane and even if stuff like this is from the Daily Mail, it's normal for a mother to worry.

Now that my younger daughter has successfully landed I can breathe for a bit and then sit down and work out whether I can, or even should, do anything about various personal, parenting, financial. political, social and religious questions that are going on around me.

Busy, busy, busy

2010-04-29T22:06:00.002+01:00

with lots of things including trying to get organised for this.

Throwing one's youngest out of an aeroplane is a bit frightening - but she's looking forward to it.

And now it really IS Easter

2010-04-09T22:45:00.003+01:00

One of the most poignant and troublesome things about the picture of the daffodil I posted for Easter Sunday was that it is in the garden where Thunder the tortoise was hibernating but there was no sign of her. I always doubt whether Thunder will rise again after her long sleep, and I guess one day she won't. But this year, despite being dug up at the beginning of her hibernation to attend the Church pet service which she really did NOT enjoy, and apparently hibernating in the "other side" of the garden, despite the cold weather, despite the lack of sunshine until now - she's up! I came home this evening only to see her busy burying herself again with a look on her grumpy old face as if to say "bugger this, I'm going back to bed again". At her age she doesn't have to behave well to charm anyone - we all love the fact that she's alive at all.

Sunday's come

2010-04-04T15:29:00.005+01:00

I had half promised a friend that I would burn something on this fire for her. For all sorts of reasons, some of them serious, sad and painful, and some of them entirely practical (if everyone had asked to burn their anger on it the building would have caught fire) I didn't. But I could imagine that the words that were so troublesome to her, and a few that had hurt me, were on there, burnt, destroyed and gone.

This Lent has been a good one for me. I have faced up to quite a few personal demons and forgiven those involved in the events, myself included. A lot of the anger and shame is burnt out, destroyed and gone.

Of course that doesn't mean that everything is rosy in the Easter garden of life and there will be no more struggles any more. Just as in the service that followed the lighting of this fire some people were bored, some dripped wax all over themselves, some fell asleep and some giggled when the flower arrangement fell off the wall so with life there will be more shame, more troublesome events, more literature that so angers I would like to burn it. We are an Easter People but each year there are problems with Easter being too early, too late, too warm, too cold. We probably always look more like this bedraggled daffodil than a glorious flower arrangement even before it falls off the wall.

That really doesn't matter too much. It is still Easter. Christ is Risen

and yet another conference

2010-03-29T22:20:00.001+01:00

I went to the B-EAT conference in Bristol today.

It was very well organised indeed and very interesting and stimulating. As a half day event it wasn't as high powered as the three day conference and the setting (a former military hospital now used mainly as a resource centre for the disabled) was far less luxurious, but the room was well lit and warm and the presenters easily audible and the fact that it was more intimate and local made it more useful in many ways.

It was billed as being for GPs, nurses, counsellors, therapists, teachers, youth workers, school nurses, social workers and carers - plus many more. Apparently there was one GP there, and one other person who got mistaken for one for the second time in a fortnight - I flatter myself that this is because I exude medical information from every pore but know that it is really because I have learned that what doctors do at conferences is to swipe all the post-its off the exhibition stands
There were obviously plenty of teachers, possibly some school nurses and certainly some therapists. I'm not sure how many carers there were although there were obviously three or four other than myself and the other mother from my area.

As it was a small conference the talks could be tailored more specifically to their audience. There were a lot of teachers there who enjoyed the presentation by the B-EAT associate trainer without question. Actually I enjoyed it too, and couldn't quibble with much. Her last slide did contain the old chestnut "It's not about food it is about feelings" but I guess for school teachers (certainly in day schools) it probably is. It can be the job of a parent to re-feed, and of a medic, but it isn't the job of a French or Latin teacher.

The second speaker got more heckling (I wouldn't have thought before it happened that even my mouth would run away with itself enough to introduce me as "I'm an infamous Maudsley failure") but dealt with it very well. Dr Hugh Herzig has the distinct disadvantage of almost sharing a surname with the infamous Belgian of EDIC, but is in no way like him. He gave a calm, measured and responsive talk and is my new hero. That is not to say that he preached the kind of evidence based treatment that friends do. Far from it. His main form of intervention was motivational and most of his talk was about cycles of change. He had designed his talk with general medical personnel in mind but was quick to tailor it more towards those in education. He mentioned Maudsley, but only at the end (and when asked to by the mouthy woman in the middle row) and all in all I think he gave a VERY good run through in half an hour of the current state of treatment options in the UK even if they're not what we all might like them to be.

There was then a presentation by a local service which was well done but to my mind concentrated too much on body image (I'm prejudiced, my daughter's body images were definitely a result of the ED not causal, so I don't go much for the Dove self-esteem stuff but I know others find it helpful) and then an amazing presentation by the B-EAT young ambassador who was at the EDIC conference - such a brave and lovely young woman and very much well worth everyone listening to.

I thank B-EAT and particularly Francis for organising this conference and recommend the local conferences to anyone from the UK who can get to one.

The advantages of real life

2010-03-21T13:01:00.003Z

Of course real life complications aren't all bad. Just complicated. Things that don't run to theory aren't necessarily running badly, they may be doing really well, just in ways that surprise.

At the conference I spent more time discussing parenting with a lawyer and a salesman than ever I did with a family therapist. Back at home the toddlers in the Thursday group always give me more in the way of spiritual insight than any tomes on theology (although if I actually READ the tomes that might give them more of a chance).

All this isn't to deny the importance of measurable, evidence based treatment, or indeed of scholarly, detailed theology. It's just that, down at the roots, the complexity of life can be beautiful, and an opportunity - and even when it's not, it's there and needs to be factored in to the bigger picture.

Livin' in the real world

2010-03-19T08:30:00.003Z

I travelled up to London a day early to meet friends for an unusual afternoon tea and stayed on for an extra day to be with my mother for Mothering Sunday so all in all last week I had five days of learning, feasting and fun.

Not all of the sessions were hopeful, but even those that were less than encouraging were stimulating and it was a real privilege to be there debating, sharing ideas and listening (probably not enough).

But now it's back to real life. To a world where what I cook for dinner is more important than what I know about feeding mechanisms in mice or in humans for that matter. To a world where, the fabulous Internet apart, the main people with whom I can try to share ideas are too close both to the problems being discussed and to me, for the conversation always to be rational or helpful and where, if we disagree, we DO still have to see each other the next day. To a world where the fact that it is the end of the financial year means filling in forms that you would never have believed existed need in triplicate by next week or dire consequences will ensue. To a world where the immediate problems of actually recruiting staff are more, well, immediate, than the theoretical models of care favoured by them. To a world where patients and clinicians all have to work with the resources they have rather than those they'd like and if that means working with people with whom they disagree then so be it.

All this to be tackled while exhaustion from travel and excitement sets in.

So what I'd better do first of all is to learn from the theoretical model I advertised to everyone I could think of but wasn't actually discussed by name at the conference, and GET AN EARLY NIGHT OR TWO. After that, when the accounts are in, I can perhaps start to work on what my role is or isn't in family life, advocacy and sticking my two pence worth in whether it is welcome or not.

You CAN have it all

2010-03-16T21:58:00.003Z

as long as you take your regular dose of Cynthia Bulik

There were two absolutely excellent talks during the conference on the science of eating disorders. The second by Professor Roger Adan involved very detailed information about Leptin as well as very cute rats.

Late in the evening I tried to explain it to my parents. They are in their 70s and not scientists, so when I had struggled through and their only reaction was "so the ideas in that book are all wrong then?" I presumed that I'd just failed entirely to explain. After all, although that particular title isn't exactly the one I'd take to the proverbial Desert Island for comfort, that isn't because I don't agree with the approach advocated, rather it is just that I couldn't implement it. Science and Family Based Treatment go hand in hand. Right?

During the otherwise excellent session by Prof Ivan Eisler we did have one exercise and a resultant comment from a very clever man which made me wonder whether they really did. Has recent work on neurobiology removed the need for and justification of therapy? Is the point of Individual Therapy at best something to pass the time between lunch and afternoon snack? Is family therapy only necessary because families can be such screw-ups and only useful when they have been professionally ironed out by therapists? Is it any use at all to families where the parents don't have horns and tails?

I CAN see why it might seem that way. However I really do believe in what could unscientifically be termed "The Whinnie the Pooh Approach". In order to achieve full recovery people need BOTH food and therapy.

As well as the good neurobiology, there were also some good presentations on therapy (there were some disturbingly awful ones as well but they're probably best treated like the pro-ana sites that they visually resembled and starved of the publicity they thrive on). I particularly enjoyed the presentation on DBT by the team at Exeter. They didn't seem to quite understand that people who were unable to react and interact happily with therapists and friends might not be able to react happily to their parents even if said parents weren't ogres, and they were singularly unable to grasp that individuals might simultaneously be suffering from Anorexia Nervosa AND some of the more impulsive characteristics of the patients for whom DBT was originally designed, but what they were offering was rational, and hopeful. I COULD see how it could be combined with the physical healing with food to help even if they didn't actually mention the neurobiology bit in their talk.

They could have done. In the first lecture we got both. Fair and square. Measured, digestible, tasty portions of both. Cynthia Bulik had the most amazing and touching videos of mice running round in their little wheels deprived of food and past caring. She also had the most amazing and touching interviews with partners talking about their journey in recovery after specifically designed couples therapy. Obviously her team attend to the physical alongside the emotional when doing their therapy with humans. Apparently she has compassionate re-feeding protocols for the mice too. Perhaps they feel psychologically supported in their recovery while they are being physically supported - who knows? When we can interview the mice about their feelings as well as test their physical and behavioural responses we really will have it all.

Conversion on the road to South Kensington

2010-03-16T13:13:00.002Z

OK it wasn't on the road to - it was actually IN South Kensington in the foyer of Kensington Town Hall and Conference Centre, but that doesn't sound so good. ....

I'm a huge supporter of the NHS. I work for it, my family are treated by it, and I don't have the money or insurance coverage to do anything else even if I wanted to, which USUALLY I DON'T.

I therefore spent the first day of the conference avoiding the private sector stalls. On the second day I relented a bit and decided that raiding the stalls for post-its for work was probably a good way of the private sector subsidising the state.

By day three though, I had had a total conversion. I'll confess that much of it was because what was being served up by the NHS was poor in the extreme, but it was also because of the compassion, care and concern shown by the dear people from this facility. Yes, of course they are after the business, and their treatment is very expensive, but if the NHS will insist on following the gurus of "Recovery" without questioning whether or not they have a clue about what that actually means in terms of eating disorders then we'll just have to be thoroughly grateful that someone, somewhere understands and wants to help, even if they do need to charge a lot of money for it.

The Feast Family Sculpt

2010-03-15T22:17:00.000Z

For Chris

Beware the Ides of March

2010-03-15T22:08:00.002Z

I have returned from the EDIC conference with great memories, a lot more knowledge, some new battles to fight, and the inspiration and anger to hit out at poor services, inadequate research and downright stupidity like a boxing kangaroo. Beware.

HAPPY BIRTHDAY

2010-03-08T00:01:00.000Z

21 TODAY

Happy World Book Day

2010-03-04T08:58:00.002Z

Happy World Book Day

Fiona Bromelow is fundraising for beat - JustGiving

2010-02-22T21:29:00.001Z

Fiona Bromelow is fundraising for beat - JustGiving

Posted using ShareThis

Tired, tired, tired

2010-02-20T20:34:00.005Z

If you're very lucky I may give up blogging for Lent - not that I've been doing an awful lot of it in preparation.

Truth is I'm very, very tired.

I've done my usual work hours at odd times in order to save time for a voluntary job, and a couple of extra shifts on top for the money. I've also expended a lot of emotional energy.

But it's been worth it. Well, well, well worth it.

Thanks to the support of some excellent people I was able to overcome my own fears and play a part in a team who did a difficult job well. Not perfectly, not without leaving loose ends untied but well enough.

Now I will rest and prepare for the next challenge.

Everyone's gone to the moon

2010-02-02T19:04:00.003Z

Friends are rightly getting both sad at the foolishness of this apparent statement from the Obama family and excited at the opportunity it may bring for spreading a truly healthier message. Meanwhile I have been turning my gaze, and then my wrath, towards the Church Times, or more specifically towards an article by Terence Handley MacMath in this month's magazine insert "The Sign" entitled "Not Eating for God" and helpfully incorporating both a picture of a girl looking longingly at a pea, and a misquote from Kate Moss. Who needs to surf the Internet for pro-Ana sites when your friendly local church will sell you such stuff for only 30p?

Oh well. Even the advertising department of the Church Times only claims a circulation of 1/2 million for The Sign, and I'm sure most people don't actually read it all. Many, many more people are interested in the Obamas, but, just as the media is more interested in the Church's attitude to sex than it is in its attitude to food, we seem (possibly correctly) to care more about the fact that Obama isn't sending a man or woman to the moon, than about the message he may be giving to his daughters.

I think I've done all I can about Obama (posted a comment here) and am about to do all I can about the Church Times (send a stroppy e-mail here) so is that it? Should I now worry myself about moon projects and papal visits and forget about eating disorders?

Well no, I really can't.

I have an opportunity to play a small part in real on the ground work and services. It's going to be a LOT more difficult than firing the odd e-mail off to famous (or not so famous) people far away. I really don't know if I'm up to it. But with a lot of help and advice from some very good people I'm going to give it my best shot.

More on the *&%%^&^& family

2010-01-30T19:46:00.005Z

*
Probably the most sensible moral that can be drawn from my experience of re-reading this while watching this, is that you don't have to be a Buddhist or a DBT expert to realise that it is better to concentrate on one thing at a time.

Since I seem to be constitutionally unable to do this, I was left comparing and contrasting and jumping to some interesting (to me anyway) conclusions.

I am a very biassed commentator on Family Based Therapy. Therefore my reflections are passed through the glass of failure and must be taken in this light. The statistics speak for themselves. Over 75% of sufferers ultimately flourish under this treatment.

With the other quarter, I wonder, being among them, if perhaps at least some of them come from families who are not cruel, or wrong, or even particularly dysfunctional, but who just don't conform to the rather narrow definition of family given in these text-books and therefore struggle to fit into a therapeutic pattern that just isn't going to work for them.

The text is a potted version of this much longer one, and indeed of whole books, and therefore is bound to be pretty simplistic. There ARE subtleties in the full work not covered in brief outlines.

However the "family" part of the family based therapy is pretty well explained in the text; the parents must work together, the sufferer should be aligned with his or her siblings. Two parents parenting. Two or perhaps three or four children ummm childrening?

Yes I KNOW that the history of Christianity episode this week was on the Eastern Church and that things in the west are different. However I'm not sure that they are really THAT different and even if the ideals are, that the details of family life are really completely opposite here. Just as in the documentary, many many families here, whether Christian or not, are not one mother, one father and two or three siblings. Grandparents are often the main carers. Fathers are often absent, mothers sometimes so. Some children are loners, others only thrive in groups. Some parents seriously discuss the best way to bring up their children, others are too busy praying or fighting or just getting on with life.

With a world that is so diverse, so complicated, so intricate, a theory based on one kind of family, one way of helping them, is bound to be limited. The question may be how to overcome those limitations and extend the kind of success experienced by the majority to those "different" families. I may be very wrong but I certainly don't think it is how to force the different families into complying to a pattern that they just can't match.

*The icon is of St Monica, mother of St Augustine. Apparently she had a difficult time bringing him up but isn't considered a failure by the Church nowadays.

Family

2010-01-17T21:39:00.002Z

Have had a MUCH more successful family expedition. OK, so we ate or drank too much/too little, worried about each other and ourselves, and at one terrible moment the car looked likely to break down. But all in all we had a wonderful time with extended family celebrating nephew's birthday with everyone from his grandparents to his 6 year old brother joining in. Thanks to the gift of the written word, two of us were able to take Mr Stephen Fry along with us which helped during tenser times.

Who Cares?

2010-01-11T19:34:00.003Z

On the way back from a less than entirely successful family day out, I got a phone call.

It was 7pm. It was a Bank Holiday. All the NHS professionals I know of were either tucked up warm at home, facing a similar family journey to us, or frantically providing basic cover for everyone else's patients from the hospital.

Yes this person was offering treatment to me and mine and can, at least in the sense that she has qualifications in her area and charges for said treatments, be said to be a professional.

She is a reflexoligist who has recently taken over the rooms next door to her business from an established aromatherapist and intends to offer the subcontracted services of a new aromatherapist which she is presumably paying for. Therefore she is keen to acquire business. All the last aromatherapist has left her with is the equipment and her list of clients' telephone numbers and recent appointment dates.

I had an appointment in December partly because I DO appreciate a good massage, and mainly to say good-bye to the former aromatherapist who has been a kind and thoughtful bit player in our journey through the mental health care system. I DON'T think that anything she has done has cured anyone of anything, but she has never done any harm which is more than can be said of many along our way and I wanted to thank her and felt that it was worth paying her fee as a one off to do so. I certainly can't afford to see her replacement regularly, although IF my credit card survives its little trip out with the daughters to buy clothes for their cousin's party, I might book one session to try the new lady.

So was this an example of a kind professional offering to go over and above the cause of duty to contact someone out of hours? I don't think so, although neither do I feel it to be entirely an example of a money grabbing charlatan preying on the sick for their cash. Much though the socialist in me hates to admit it, it probably IS an example of the free market making a service more available than it would be under the state system, at least for those who can afford to pay, which I occasionally can. I really don't think it's any way to run the essential parts of the health services, but for the complimentary bits I suppose it's OK.

Now to try and find out if any of the evidence based, essential bits have survived the snow..............................

Reflections on the snow

2010-01-07T15:49:00.002Z

It's beautiful. It doesn't inconvenience me as someone whose job is near enough to walk to should my car need abandonning in town, and it's fun for the kids who have been sledging and built snowmen and igloos.

OK, it is NOT fun for the elderly and disabled and I know of several families facing long journeys at the moment who are not looking forward to the prospect. Also, it has given the cat, never in the best of health, a chill on the kidneys.

BUT, I think for the moment, for me, the positives outweigh the negatives. Hubby has had a white Christmas, meaning that he hasn't been able to get to church to celebrate it, but that serves him right for worshipping so far from home. He did have the offer of swinging some incense round at St M's. Z doesn't really like the snow, but her social life at the moment seems mainly to revolve round the cinema which is inside and warm anyway so she's not really noticing it, and R, and all the god-children are LOVING it.

The picture on the right was taken on the walk to Little Fishes this morning, and the one on the left during the walk to work yesterday which was really rather magical.