F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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MarcellaUK

The carers' conference at the Maudsley Hospital yesterday (27th November) was exhilarating, exciting and absolutely exhausting. There was a packed programme with possibly too many speakers. However this was OK because the talks mainly hung together and a strong theme of hope ran through the whole day.

I think it's important to note that the "New Maudsley Method" and all of the work being done by Janet Treasure and her team is entirely about "Collaborative Care". This emphasis was evident in the makeup of the audience which as usual contained as many professionals and past and current patients as it did carers all gathered together to tackle a common enemy, ED. If anything there were probably fewer carers there this time than in previous years. There were certainly no carers actually speaking which was a pity as it did come across a very very little as a bunch of professionals and patients (my favourite speaker was both) telling parents where they were going wrong and how they could do better. However the good well outweighed the bad and all speakers were interesting and informed and some of them were absolutely excellent.

I think it's important also to note that the New Maudsley Method and all the adjuncts, allied programmes and ideas discussed on the day are not treatments for Eds. They are add ons. Doitagain described it brilliantly here - It makes life a little calmer although it doesn't fix the situation......It just makes it easier to deal with and when you are showing compassion ALL the time and that is the only emotion you are showing, the dynamic does change one way or another.

Nearly all of the talks all had the very broad theme of compassion and hope. We started with a talk from the sponsors of the event, the psychiatrist and two staff from a private unit. I began the talk with a strong wish to dislike what they said and was muttering under my breath in a Mutley from Whacky Races type of stream of consciousness “makingaprofitoutoftheNHSbytreatingpatientswhoneedn'thavegotthissickinthefirstplaceiftherehadbeenproperearlyintervention.......” sort of way.
I loved them.
The psychiatrist was excellent and the psychologist who I had the pleasure of talking to afterwards about Charlotte's Helix was very impressive. Their techniques for inspiring hope in their very sick patients, the parents
and themselves would be of use to anyone fighting these horrible illnesses.

After a short break we had three talks from professionals running parent training courses of various types. One, from a former patient, was very personal and very moving and I'm extremely glad that he's still doing a lot of work for carers on a voluntary basis even though he is now working in a different field. Another was data-rich, an very important part of getting NICE to improve the guidelines on eating disorders as Janet Treasure explained at the end. The first was on Emotion Focused Family Therapy. It was an excellent presentation featuring an interview with some parents who had done it. A LOT of the audience were very impressed. The treatment, and the team offering it obviously have a lot to offer many parents. I was probably the ONLY person in the audience left with questions. There was an enormous attempt to stress that the “apology” to the patient which can form such a powerful part of the courses wasn't based on the idea that the parent had caused the problem, but simply a way of releasing some of the burden felt by the sufferer. The father interviewed about it had found it game changing. I remain skeptical but then again I am a nasty suspicious cynic.

The afternoon was more varied with a more political speaker talking about improving services for students kicking it off and then the simply wonderful David Veale speaking about OCD and Body Dysmorphia. The last two talks were by patient on recovery. An enthusiastic American spoke about her personal experiences and then a current patient and her “peer supporter” (a young professional rather than a recovered person) about web based peer support.

Janet Treasure rounded off the day with a summary of the latest evidence on supporting carers and a plea to us all to get involved with the drawing up of the NICE Guidelines. Throughout the day Charlotte's Helix was featured, as it was in the information packs and I am very hopeful indeed that several of the professional teams there will take note and will sign up to offer their patients and their families the chance to participate.

So, all in all a worthwhile day. To those of you who were there it was lovely to see people I recognised and I'm sorry I didn't get to talk to you if I didn't. Do post your own thoughts if you have time. To those of you who weren't I hope that this is of at least some interest and do consider getting involved with both Charlotte's Helix and the NICE Guidelines.  

Fiona Marcella UK
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evamusby_UK
Thanks you SO MUCH, Marcella, for taking the time to share all this, for those of us who didn't go.

And thank you for bringing to the fore that New Mausley is an adjunct and that Janet Treasure's team are into collaborative care. I am keen on people understanding this because personally it took me too long to understand that FBT/Maudsley was different and that it requires parent to take charge, not collaborate or try to create motivation. With a 10 year old that was important for me to 'get'. You mention Doitagain explaining this nicely - do you have a link?

Great to hear you were moved (in spite of yourself) by the clinicians from Ellern Meade.

You say that Janet Treasure made "a plea to us all to get involved with the drawing up of the NICE Guidelines". How can we do that, did she say?





Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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EB
Thank you for the review Marcella - and I am really glad to hear that the theme that ran through was hope, although it is a shame to hear that at a carers' conference there were fewer carers than you might have expected, either attending or speaking (none speaking apparently).

On the Charlotte's Helix side, for anyone who may have come away confused, I believe the presentation given focused on some of KCL's work with Genomics England rather than on the work of Charlotte's Helix.  Genomics England is funding KCL to do some whole genome sequencing for a particular subset of those who have encountered anorexia within their family; Charlotte's Helix is involved with genetic research into anorexia that has a much wider spread and no government funding.  Charlotte's Helix is helping to support recruitment for the Genomics England work, but the two pieces of research are otherwise separate.  You will, however, be able to find out more about both pieces of research from the Charlotte's Helix website (the Genomics England information will, we hope, be up before Christmas).

On the Emotion Focused therapeutic "apology", what can I say?  I hope it is not cynical to say that asking parents to apologise before therapy gets started is problematic, at least as far as I am concerned, even if the therapist might assure that it is not.  Professor Uta Frith's scientific work proved, many years ago now, that so called "refrigerator mothers" were not responsible for creating autism in their children, and you would be hard pushed in modern times to find a therapist in this arena who might still tailor their therapies as if they believe this to be the case.  A stress on the part of the therapist that the apology is an attempt to reduce burden on the sufferer does not negate the practical effect of what the apology means - in practice it implies "guilt", and it attributes a certain amount of "blame".  I hope that the scientists at work on eating disorder research, those like Professor Cynthia Bulik working on the genetic research of which Charlotte's Helix forms a part, will help seal the lid on the notion of parental blame around eating disorders too. 

"Parents don't cause eating disorders, and patients do not choose eating disorders" - F.E.A.S.T.'s founding principles #2

Erica, UK
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