another reblog

link

hints and tips

Logging on to Twitter (something I'm not very good at using) this morning I was faced with this.


 

 Do they have any tips on how I can reduce the risk of my child developing mania or asthma?

There ARE things parents, schools, medics, society can do to reduce the risks of all three, but do we see non-specialists confidently sharing them with the world in order to be helpful to all? No, but then again Eating Disorders aren't like other illnesses, or are they?

Someone is wrong on the Internet

 One of the side effects of frantically googling for information on a specific subject is finding "related articles". When looking for the useful study presented at last year's EDIC instead I found this

It's on a site that certainly should be reputable. It's a report on a study by some pretty major figures in the ED world so what's not to like? Well quite a bit to my mind. OK, as a parent of a child who developed an eating disorder I'm defensive. I made a lot of mistakes during her childhood and I regret them all. However I don't think that, on their own, they caused her eating disorder and I thought that such ideas had gone years ago. Yet here's a study looking at only such "risk factors". All links mentioned  (and it does explain that they are not proved) are between potentially fatal illness and parenting and there's nothing about the possible genetic and other environmental influences that may influence the development of little understood and woefully under-researched disorders. Those involved in eating disorders "Prevention" might be as disturbed as those who debate with them. Negative energy balance is tangentally linked, in the "related articles" which all explain what a good thing it is.

REALLY?

well doh!

This isn't really a post. It's more of a repost of someone else's blog, found via a retweet of the same.

I like this piece, although I do wish it didn't end as an advert.

It reminded me of a study I heard about at the EDIC conference last year (Recognising and Managing Physical Problems on a Specialist Eating Disorder Unit) which I can only find in this very difficult format. As the title explains it's about the physical consequences of long term Anorexia Nervosa. They're dire. My first reaction was "well doh of course they are". My reaction now is "why the hell is  this important study so difficult to find. Every clinician should know this and they obviously don't"

What right do I have....

Having hardly touched this blog in the last year this is my second post in as many days and I have ideas for a couple more.

They're all on the same theme. I'm not an expert on the subect. I haven't had an eating disorder and I'm not a professional in the field (or indeed in any field). I get angered and enthused and excited and frustrated in my capacity as a mother, nothing else. I know some stuff about other subjects too and perhaps I'll post a whole series of blatherings about other subjects that I've learned about through loved ones but for now I'll stick with this one. It matters very much to me. It matters to a lot of my friends. I was conforming to the norm I would have done it all last week.  but I didn't. Maybe I'll finish my drafts on Lent the week after Easter.

Happy Anniversary

There are reasons, if not excuses, for this sudden blog after so long an absence. It's Lent. It was EDAW last week. It is the end of the financial year.   If it hadn't been this tome it would have been one of the others that is currently in drafts, probably going nowhere. I can't promise either to keep up my blogging or shut up, but here, for today, I go....
 
10 years ago I petitioned the Prime Minister to give more resources to the treatment of eating disorders. I know it was 10 years ago because the completed petition was sent to "Tony Blair" and answered by "Gordon Brown" All trace of the wording and reply has been archived to the uttermost depths of the Internet and I certainly can't find them. It was a general "give us (meaning primary care, secondary care, CAMHS, AMHS, parents and patients) more money" request and recieved a general "the government cares a lot about young people (no mention of persons over 18) and will of course invest" sort of answer. These were, after all, the days when we still remembered that Things Can Only Get Better

100s of petitions later we have a government that claims to have made that investment.You can sign a petition if you want to to hold them (or rather some of the clinicians they try to use as pawns in their games) to account on it if you want. Things honestly seem to have got a lot worse for many people but there are developments in community services and some of the general promises made by dear Gordon to me are being paid lip service at least.

Would I do it again? If I was newer to the issue, yes, probably. Now I'm too long in the tooth and cynical. I'm also hopeful that a decade on there is more that a mere parent can do, that there are better ways mums and dads (and partners and siblings) can get involved both in the treatment of their own loved ones and in the politics of health. Or am I being as naive as I was then?

One more step

In the UK the A Levels are big news every year, although they do appear to have been swept off the front pages of the newspapers this year by Brexit and the Olympics.  Stories of schools pitted against each other and exams getting easier do seem to be being replaced by questioning of the drive for 50% of all 18 year olds to be fed through the college system. 

However, the end of August, beginning of September is still a time of transition in this country. Soon four year olds (some of them only just having celebrated their fourth birthdays) will be going to "big school", 11 year olds will be remembering when they thought the Infants' was big as they contemplate secondary school and yes, masses of parents will be waving goodbye to their young adult children as they go off to college away from home. Dear friends are remembering that time and contemplating a life after "project motherhood".

It's 10 years since we slid clumsily off the conveyor belt of playgroup, reception, school, sixth-form, university.....Younger d's (non) AS levels was the point where we were totally derailed although five years of family therapy had left us all the foolisher as to why we were having such a bumpy ride and why older d wasn't leaving for "Uni" but coming BACK from her eh hum "couple of terms up at Oxford". I still get huffy and do the whole self-blame "I've had family therapy and now I know I'm completely screwed" thing. When "other people" are allowed to mourn the fact that their healthy children are going to college I sympathise but also think "hey, isn't that Expressed Emotion? How come she's allowed to wail in public and if I as much as look at a tissue I'm the cause of mental illness, relapse and very likely world poverty and the atom bomb".

Despite my worst efforts both daughters did do the hokey-kokey of alternating between "student housing" and home, just differently to the way most others do. It saddens me to think that the funding opportunities that allowed them to do it only 9-6 years ago (nursing diploma bursary and disabled person's housing benefit) wouldn't be available for young people under 25 now, and indeed that no one can escape the sausage machine until 18 any more, but that's the benefit of hindsight. At the time of the results we did think it a bit of a disaster. It really wasn't, it was just one more step in our rather chaotic dance of family life.

Just testing this blogging thing out again

Science

Poet Fiona Hamilton reminded us in her beautiful performance on the Friday evening that medicine is as much art as science. Where does the mind begin?  No one tried to answer that, but there were a lot of figures and graphs and studies of the brain at EDIC. 

"Science" covers a wide variety of disciplines. RCTs on psychological therapies, MRI scans, mapping the genome, these were all in the programme. They were all mixed and matched with treatment protocols and the economics of funding and personal and family experiences too.

Although Dr Blake Woodside's talk was slap bang in the middle of the "biological factors" plenary he spoke as much about the novel treatments his team are offering as the science behind them. The first talk took us galloping through genetics. The presenter had problems with her slides and there wasn't enough time to cover such a vast topic. The third talk was very technical. Maybe it was because by the Saturday I was tired but I didn't take many notes during that plenary. That didn't stop genetics being a topic of conversation throughout the three days and science being centre stage. The Charlotte's Helix stand did brisk work with their spit for science which caught the imagination of many

The short papers on the Thursday weren't supposed to be about science. I went to the ones specifically labelled as "treatment".  However as a whole they spoke to me of science. One was on training which may be more art, but the three on controlled trials, randomised or otherwise were fascinating to compare. One was a full Randomised Controlled Trial comparing two therapies used on a hard to engage population in the community. The others were therapies given to inpatients that were studied without a control. The presence or otherwise of a control group wasn't the most telling factor. The inpatients (who spent the time of the trial unable to get out of it and being restored to a healthy weight) completed their treatment and seemed to benefit from it. The outpatients mainly failed to stay in the trial. Does that mean that the two IP treatments were effective and the OP not? No way. How on earth can you begin to separate out the effects of refeeding and of all the other therapies given IP from the specific treatments.  Did it mean that the OP treatments held no hope. I don't think so. Surely it meant far more that hard to engage, long term patients need more support in the community to access and continue in treatment (and probably quite a bit of refeeding too).

The last short paper was on the medical complications of severe AN. Patients admitted to an adult ward, often with long histories of the illness, had their medical records scrutinised to see what the physical effects could be. They turned out not to be very well.  While this should be blindingly obvious to anyone who knows anything about the illness this was one of the few studies that has actually studied AN from a medical point of view. Why is that? Why did it seem odd that among the flyers for books and the adverts for private treatment centres in our delegate packs, there was a brochure for medical scales? Therapists may wish to ditch the scales but they are ONE of the important tools in assessing physical health. Why is the data on eating disorders so poor that no one has a clue how many people suffer from them in the UK let alone in the refugee camps?



 

Treatment

One of the problems of writing up my experiences of EDIC under themes rather than chronologically is that the themes overlap. Janet Treasure's work isn't a treatment, but many of the other family interventions I discussed yesterday are. 

 Ivan Eisler even gave us a history of, and two names for, the treatment he was discussing (the link goes to an older presentation on a similar theme). We were whisked through a history of FBT (or FT-AN), introduced to the three treatment manuals (going backwards Eisler's own, Lock and LeGrange and an older, unpublished one by Robin and Siegler). All three stressed working with the family, gave the parents centre stage in helping the child and encouraged separation of the illness from the child. The differences included the order and number of phases of treatment. Eisler has developed an initial phase of engagement of the family and rejects the word "empowerment". It's true, it's a word that doesn't trip easily off a British tongue and the idea that parents are being helped to be effective in caring for their sick child, rather than powerful in a battle against a monster resonated with me even if I know that others will find it confusing.

The other treatments covered in plenary sessions were CBT-E, MANTRA and effective treatment for BED. To be honest, these sessions coming after both lunch and Janet Treasure's keynote, I was a little too sleepy to really take them in. Byrne talked well about CBT-E but her main arguement, that figures for its effectiveness are not inflated, was made in a poster in the stroll. I was so interested in the history of AN with which Schmidt introduced her talk on MANTRA that I rather missed the description of the actual treatment and while the evidence is enormous that BED is very treatable my main take-home from the German talk was that funding would never be granted for such treatment in the UK as the only disappointing result was a lack of change in BMI.

I was very, very lucky to be able to go to the whole conference but not have any work to do. This allowed me to pick and choose the workshops I went to on the basis of personal interest rather than anything else. Therefore I don't know how the talk on Specialist Supportive Clinical Management  went or even what a Recovery Oriented Approach for Eating Disorders really is. I am interested in DBT, so I went to two talks on it. The British team were great. They explained what they did. They gave us practical examples. I didn't NEED to go to a second talk but I'm so glad I did. Dr Fragiskos Gonidakis seemed to have that special quality that people like Janet Treasure have, a passion for the work and a real liking for his patients.

Family Values

My original reaction to the EDIC programme was negative. There appeared to be sessions about families but I wondered whether these would be in any way positive.

OK, Janet Treasure and a parent carer were giving a keynote but would this would be a tickbox gesture, a description of how you could herd the frightened parents into a pen like the rhinos and ostriches that they are and thus avoid the awkward business of having to deal with their unhelpful suggestions and complaints?

Much more worrying was the emphasis on "Attachment". Having seen that an author who has deliberately challenged modern thinking on the role of the family and hurled it right back into the dark ages, was presenting on attachment, I feared that the keynote on the subject would also be strong on  blame. It wasn't. In an engaging and amusing speech Dr Fonagy outlined the importance of attachment and argued that youngsters with poor "theory of mind" may use ED symptoms as a way of social regulation and that "Mentalisation" MIGHT be helpful with this but he deliberately avoided blame and made no boastful claims for his ideas over anyone else's.

Treasure and Langley's keynote couldn't have been used as an excuse to sideline parents away from the "main action" by any but the most dyed in the wool blamers. I heard that it was completely enlightening to some health economists who hadn't previously factored in the costs and benefits of family involvement. It concentrated on the isolation brought by the illness, especially as it became entrenched in longer term sufferers, and the need of families for practical skills. Langley brought up this point again in a question to Ivan Eisler on the third day. His talk on this history and development of family based treatments was part of a trio including news from France and Germany. His assertion that telling the parents "you know how to feed your child" and then leaving the parents to do it all alone isn't FBT was quite accurate, but it IS how all too many families in the UK experience it. By contrast parents in Germany are undoubtedly under-utilised, if not disempowered, by their system of automatic admission or day patient, but it is an immediately safer way of dealing with these life-threatening illnesses than some of the things that go on in the UK.  

I did hear criticism of parents, from patients that their illness was their business, from a counsellor that parents refused to acknowledge their children's illnesses, from a clinican that "parents get these ideas off the internet". These dangerous ideas turned out to be the NICE guidelines which in my mind couldn't be woollier if they were knitted from yarn, but the clinician had felt threatened when they had been used against him. However I didn't hear any of them during the attachment workshop. I expected to hate it and, as I put on my feedback form, my expectations were fully met, but it was billed as  teaching how to engage families in treatment, not "how to blame your mothers" and most (but not all) of those there seemed to be willing to swallow the theory in order to get to the practice. There was at least one other mother there, and apparently she loved it. I reluctantly have to conclude that perhaps parents are so desperate they will accept anything. I know I was when we went through our family therapy days. What can we do about that?

I'm back

I am back on this blog after nearly a year (it took me ten minutes to re-learn how to start a new post) and I'm back home after 3 very hectic, tiring, and enjoyable days at EDIC.

The combination of having had to concentrate so hard on so many talks over the last week and landing back in real life with so much to do has made me feel like some catherine wheel that has come off its nail and is spiraling out of control to the ground. I expect with sleep and food and some of the other self-soothing techniques I've be learning about I will recover. However the spiral is quite a useful illustration about how I intend to reflect on what I have learned - from the middle out.

If I just went through each talk in chronological order I would bore even myself to death. I intend to write four blog posts only, starting from the heart as in mid point on the middle day and as in the family who can be at the heart of treatment (or excluded, or left to muddle through alone, or only welcomed so that they can say sorry). I will go on to treatment approaches, science and lastly coming back round to economics which as the chair of the conference pointed out is always near the heart of political thinking in health provision.

meanwhile over in the real world...

I seem to be on something of a roll with blog posts, even if the two I have in mind for the next couple of days are more re-blogs of other people's words. ICED was exciting from the outside and looks to have been even more from the inside and I'm sure it will continue to spark ideas and blogs in many for some time to come.

However (you just knew there'd be a but) one of the delights of the PC, as opposed to the little screen on my phone from where I connect to the world when I don't have a computer, is that you can fail to engage properly with six different screens at once (in other circles it's called multi-tasking). So while I was whiling away my time reading posts from and about the great and the good (Cynthia Bulik pre-tweeted her own talk, how cool is that?) I was also keeping up with fellow parents on this side of the Atlantic who are trying to get much needed help out of, or even just get some sense out of their local ED services.

I don't think that anyone at ICED stated that there even WAS a perfect system for ED care, let alone that anyone anywhere got it. In fact I know from twitter that one slide specifically mentioned how few people access treatment, how "we are reaching only the minority of individuals with ED".  Whether that is because people don't present for treatment or because when they do there isn't any to hand is a moot point. It IS probably a bit of both, but if the clued up, caring, informed parents Around The Dinner Table can't make services work for them, and more importantly, for their loved ones, it really shows how dire the situation is.

On Thursday we'll have a general election. It may well take a few more weeks to get a new government but from Friday moring onwards I'll be lobbying whoever I can think of to GENUINELY IMPROVE mental health care in general and eating disorders care in particular. It's a long way from Boston US to Boston (or any other town) UK. I expect  it's also a long way from ICED to real on the ground treatment in Massachusetts and if friends want signatures etc to help there I'll oblige, but my number one priority will be to lobby locally and nationally. At present the situation can only be described as dire.

Re-blog

I have re-tweeted the tweets linking to this, but I think it's so good that I shall also re-blog it, copying the most important part (for me) out in full as well - is that re-re-blogging?

Thank you Scienceofeds for this great post http://www.scienceofeds.org/2015/04/30/reflecting-on-the-2015-international-conference-on-eating-disorder/ and in particular for your point;

We can have all the amazing ideas in the world about supportive, collaborative care, but if there is no political economic will to support the real structural changes that need to be in place to bring these to fruition we are left immobilized

A birds eye view of ICED

I have been to Boston, but not this year and for no longer than a day.

I have been to Eating Disorder Conferences but not to ICED and not this year.

So my "attendance" at this conference was virtual and limited - for a couple of hours each day I scoured my twitter feed (a spasmodically accessed place) for posts with the hashtag #ICED2015 and occasionally commented on those I found helpful or worrying.

From this extremely limited view of the conference I understand that it began with great stuff; genetics and exposure therapy, the importance of collaborative working and the necessity to challenge the eating disorder, went on to cite parental expressed emotion as a block to successful treatment and ended with parents being told that they were unwelcome at the table and that many of them didn't want to be there anyway.

For those of you who WERE there, how unhelpful is my view? What did I miss and what did I get completely wrong from listening to the birds?

A reply

Friends have been commenting on this article in Psychology Today. I thought I'd have a go too, but the comments forum doesn't like me and has rejected my comment as spam. Since I spent an age sitting in my PJs writing it when I should have been getting up I thought I'd post it here rather than just swear and give up. As you'll see it has brought out the boxing kangaroo in me.
 

I too have been to lectures and conferences and seen seas of desperate faces. I've seen sniggers and condescension from "professionals" at those faces too.

However as many others have pointed out things are changing.

The greatest body of evidence for treatment of adolescent Anorexia Nervosa (and to a certain extent other eating disorders) is for Family Based Treatment - treatment initially pioneered by the likes of Prof Ivan Eisler in the UK and further developed in the United States. This treatment very much involves the whole family in temporarily giving up almost everything else in a bid to save their daughter (or son) and then when the danger is past, gradually handing back control of eating to the individual as and when s/he is ready. 

It isn't easy. In fact it is grindingly, terrifyingly hard. None of the papers or books, even, or perhaps most especially, those by its main proponents, prepare the family for just how hard it is. And yet, because it is the best available treatment and certainly one of the cheapest, FBT is being offered in various degrees of faithfulness to the manual (by Lock and LeGrange) by many if not most CAMHS teams in the UK. Good, if basic, training designed by the team at the Maudsley Hospital is now available on-line to all CAMHS clinicians.

So we have a situation where many families of children with eating disorders will be being asked by the clinicians to whom they go in desperation to work out for themselves how to save their children's lives. In the best cases they will receive tailored support. In many more they will be lucky if they get a general leaflet about eating disorders and the suggestion that they buy a book or two (hopefully, if the team are using the manual, Lock and LeGrange's Help Your Teenager Beat an Eating Disorder). With so little by way of practical support this "FBT Lite" treatment will be successful in many cases. Families can be very resourceful. Children want to recover even if they cannot express it or comply with treatment when consumed by mental illness.

However many families will struggle.

We did.

Maybe because of comorbid mental health issues, maybe just because we weren't as resourceful as other families, we needed far more outside support than was available from fortnightly sessions with a CAMHS nurse. When we sought it we came across the kind of "professionals" who snigger or condescend. NOT bad people, but people who genuinely believe that AN is some kind of choice made as a result of bad parenting, or pressures from social media and that the sufferer has to "reach rock bottom" and that parents should not interfere with treatment.

Those beliefs, shared by us to a certain extent (what other beliefs would we have, not having had cause to think of the subject before) really got in the way of our getting any concrete support to make a success of the model.

Our FBT experience was over a decade ago. I hope that things are different now, but I fear that they are not for far too many families. Headlines like this will not help. Parent organisations such as that set up by Laura Collins offering peer support on the sometimes lonely journey will.

I still go to conferences. There are still some desperate faces, but there are some very determined and a few very angry ones nowadays too. I will be the cynical one at the back making snide remarks. To the professionals, go ahead, snigger. I will laugh with you at times. Our journey with mental ill health and the services designed to help us has thrown up some very funny situations at times. Don't you dare look condescendingly at me though or you may regret it. 

Labels

I have had a little bit of a discussion with my dear friend Laura about the label "SEED"

Is it helpful or horrid?

I realise that in between my starting this post and getting this far Laura has written more and probably already answered some of the questions I'm about to ask, but here goes anyway. I will read her comments afterwards!

It's obvious to me that those who coined the term think it is extremely helpful, necessary even. In his work on the subject Prof Paul Robinson describes how he fought for his patients who did not qualify for life enhancing, and sometimes even life saving services because they "did not have a "severe and enduring mental illness"". In an atmosphere where those most qualified to help often don't even see patients as ill but as "bringing it upon themselves" surely a label which both stresses the severity of the problem and accurately, dispassionately, marks it out for treatment is to be welcomed?

But others see it differently. They see the label as consigning those to which it is attached to a half-life of  no, or inadequate treatment, doubly terrible because it is so often the lack of, or inadequate treatment that lands people in the position in the first place.

I would really like to debate this.

Probably in order to do so really well I should read the books. I have an Amazon token for my birthday. Maybe I should spend it on the main textbook, but I'm going to buy fun DVDs instead, starting with that film famous for the label given to its central character, Paddington Bear.

No Friends, No Family - I'm footloose and fancy free!

The Friends and Family Test is the government's latest wheeze -ask people the same standardised questions about all of the various departments of the NHS and you'll be able to compare them and "choose" the best treatment for you and your loved ones - or not as the case often is. I've sneered at the waste of resources, sighed at the effort of having to impliment the stupid thing within my own tiny corner of the NHS, and then dilligently filled in questionnaires for every service with which I have had contact and enthusiastically googled for any results that have been published so far. Such is the life of the hypocritical cynic.

I did find it difficult to fill in the questionnaire for the mental health Trust. This wasn't as it might have been some years ago because of the conflict within myself over where exactly the problems we faced lay - with them or us - but because in order to start the thing you are supposed to have had recent contact with them, either as a "service user" or carer, and I haven't. My caring responsibilities have lessened as my loved one has grown up, and her contact with the local services terminated rather more abruptly than anyone would have wished when she moved away from home. I might need the service myself some time in the future, my children or grandchildren might move back to the area and need it, but for the forseeable future I have no friends or family who would be likely to go anywhere near them.

THIS IS A VERY LIBERATING FEELING

I can put my head over the parapet, get involved in pressure groups, ask awkward questions and NONE of it risks having unintended consequences on my loved ones' care. I'm free enough to take my shoes off outside Buckingham Palace and I'm free enough to be a pain in the neck to the Trust board - watch out!

On both sides of the fence

This post will be even more obscure than most. Unlike many of my friends I am not a writer. Therefore this won't in any way be inspirational or educational for you. It's more like therapy for me, except that because it is public and you can see it I can't go into even the most sketchy of details, so it isn't that either. Suffice to say that although this could be about the conflicts I face combining political animal with realist, or religious observer with cynic, or wife with mother, it happens to be about being both a passonate supporter of and employee within the NHS and a parent advocate.


The chap in the picture looks fairly comfortable on his nice smooth fence, but then he's not making any effort to put a foot down on either side, let alone both, or to move in any direction.


I sometimes find myself in the position where, not only do I have one foot on each side of the fence, I'm desperately trying to walk with the people on both sides at once, not out of some false sense of "being nice" but because I genuinely believe in their cause. Even with a pretty smooth fence that can hurt!

Still living...

I'm posting this because I'm about to comment on someone else's blog and don't think it fair to be public about his views without at least giving a link back to me.

This is me, Fiona, aka Marcella, and I'm still alive.