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F.E.A.S.T. Board Approves
New Executive Director
By Sarah Krevans, Board President
The F.E.A.S.T. Board of Directors is delighted to announce that Leah Dean has been approved as Executive Director of F.E.A.S.T. for a two-year term beginning in January, 2013. Leah Dean has been a key volunteer at F.E.A.S.T. for some time, supporting the Around the Dinner Table Forum and, over the past year, working closely on the website and membership issues. She is known at F.E.A.S.T. for her intelligence, clear thinking and meticulous execution, and her combination of compassion with a calming balance in the face of emotional issues. She has strong connections within the organization and a deep commitment to F.E.A.S.T.'s mission. F.E.A.S.T. is grateful that after very careful consideration, she is willing to take on this critical role.
This is a moment of change and promise for F.E.A.S.T. as our beloved and inspirational founding Executive Director Laura Collins Lyster-Mensh becomes Policy Director. The new leadership must be forward-looking and ready to organize F.E.A.S.T.'s activities so that responsibility can be shared more broadly. Laura's vision, talents, and persistence brought the organization into existence and helped it mature to become an important international voice in conversations about eating disorders and the role of families. The F.E.A.S.T. Board is grateful for all Laura has done and believes that Leah, with Laura as Policy Director, will carry F.E.A.S.T.'s important principles and voice forward over the next two years.
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Please Join us for a
F.E.A.S.T. Conference
F.E.A.S.T., an international parent advocacy organization for Eating Disorders, is now offering conferences in the United States, Australia and the United Kingdom. Those attending the U.S. conference also will have the opportunity to attend a Congressional Briefing being held collaboratively with the Eating Disorders Coalition. Conference organizers in Australia and the UK are working closely with other eating disorder agencies/organizations in their countries to provide their conferences.
Each F.E.A.S.T. conference is aimed at parents and caregivers of children or young adults diagnosed with eating disorders. Attendees will learn about a broad number of topics including the media, how to get support for ALL family members, how to navigate the health system, and hear updates about effective treatment options specific to each country. The conferences will provide opportunities to network with providers and other parents and find out more about eating disorder resources near you.
If you'd like to learn more about current treatments and what you can do for your child or loved one with an eating disorder and your family, please consider attending one of these conferences. Registration and information are available at: www.feast-ed.org.
For those unable to attend the U.S. Conference, we are working to set up Pay-per-View Livestreaming. Look for more information coming soon on the F.E.A.S.T. website.
Nottingham, UK
November 23-23, 2012
Alexandria, Virginia, USA
November 30 & December 1, 2012
Brisbane, Australia
May 23-25, 2013
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"I have to say I am very keen on therapy being tailored for individual patients. It would, to my mind, be wrong to suggest that every patient needs the exact same therapy. This would ignore so many things, including co-morbid conditions and MAY make the outcomes for FBT even less successful"
F.E.A.S.T. parent |
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 Freedom at Every Age -
Yes, You CAN Do It!
By June Alexander
We know that early intervention with family-based treatment is the best front line option for treatment of anorexia in children and adolescents. But what about when an eating disorder has a twenty-year head start before diagnosis? Is there any hope of recovery? Yes!
I developed anorexia at age eleven, transitioned into bulimia in mid-adolescence, and began recovery treatment when correctly diagnosed in my thirties. By that time, I really had no idea who I was; my thoughts and behaviours were entwined and entrenched with that of the eating disorder. My parents and sister had despaired at the 'loss' of their daughter and sister. I despaired too, at the loss of my self. Thankfully, in my late 20s, love for my young children inspired me to find a way to seek recovery. This took many years. Learning and applying coping skills was essential in regaining a sense of identity - and feeling safe, secure and stable.
Initially, thoughts needed to be handled consciously. In my forties, a therapist encouraged me to identify the thoughts that belonged to the real me, and build on those. At the same time, I needed to learn to catch, defuse and delete the ED thoughts. Starving and bingeing was not the way to cope with feelings. "Focus on your feelings and the food will take care of itself," my therapist said. Learning to let entrenched behaviours go was scary as they had to be replaced with new, safe behaviours. I had to become sufficiently self-aware to say to myself: 'What's bothering me right now? What can I do to deal with this right now?' I learnt to listen to music, walk my dog, talk to God, call a friend and sort my thoughts while walking.
Doctors insisted I say a mantra 'I deserve to be treated with respect', over and over, until it gradually sunk in. I had to stop counting calories and tell myself that 'I don't need to binge today because I can eat tomorrow'; that 'even if I do binge today, I must eat tomorrow.' 'I must always eat breakfast, and lunch and dinner.'. For years I had not eaten anything until six o'clock in the evening, fearing that if I started to eat, I wouldn't be able to stop. To leave the eating disorder behind, I had to eat normally and feed my brain regularly and with different foods. Many times I had despaired that I would never be able to look forward to a meal or eat three meals a day; that I wouldn't know when I was hungry or when I had eaten enough. But practice makes perfect.
Since age 55, in 2006, regular meals and good nutrition have led to an amazing transformation in my thought patterns. I take pleasure in feeling what my body wants, and what foods I would like to eat for my next meal. Being free of the rigidity of the illness behaviours is a luxury for which I give daily thanks.
I experienced anxiety before and after my eating disorder and medication had been a great help. However, now a far more pleasurable solution appeared - in the form of a new generation. Such is the power of love, that I have eaten three meals and three snacks every day since the birth of my first grandchild in September of 2006, and have required no anti-depressant or anxiety medication. Lucky me.
Looking back, I wish someone had been able to say to me before I married: "Look, that torment you feel is due to eating disorder thoughts and behaviours. This is why you're feeling this way; this is why you're acting this way. You have an illness and we can help you fight it. We can give you and your family skills. Those thoughts belong to the illness, and these thoughts are the real you; we're going to help you strengthen the real you". That would have been incredibly helpful.
I remain amazed and enthralled and horrified at the ability of an eating disorder to twist and turn words -not only the spoken word but also the silent words that for decades raced incessantly, like champion dodgem cars, around in my mind. Say one word and my resident eating disorder would grab and magnify it to the point where confusion reigned and common sense was vanquished. One word could trigger a thousand irrational thoughts. Today I know that peace can be achieved, and the ED silenced. The struggle is worth it for life is beautiful, absolutely.
June Alexander is a writer and speaker. She has published four books on eating disorders, most recently Hope at Every Age - Developing an Appetite for Recovery. For more information visit her website. |
"My 18 yr old D(aughter), who is now in recovery after a year of struggling with RAN, including 3 hospitalizations, made the following comment when she became well enough to separate herself from the ED : "I needed you to take total control of my eating, but the eating disorder wouldn't let me tell you that." So simple in theory, not as easy to implement, but the road to recovery began when we (husband & I) adopted "brick wall personas" and gave our d(aughter) no choice, than to eat what we presented. NO discussion, justification, compromise and NO emotion." F.E.A.S.T. Parent
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UK Task Force News
Th e main focus of the UK Task Force's work continues to be the Conference in Nottingham on 23rd and 24th November. 70 parents and professionals are already booked for this and we are tentatively hoping for a full house of 100 delegates over the two days. We will be working with other carers' groups including B-EAT, several local Nottingham groups, Professor Janet Treasure and Nurse Gill Todd from the Maudsley Hospital. We hope to offer an interesting mix of speakers, stimulating discussion and a chance for parents and professionals to relax and enjoy a chance to network. A special thank you is due to Charlotte Bevan for all of her work on the organisation and to Bev Osborne who is arranging the accommodation.
Members have also been networking with other parents and with professionals to improve services:
In Scotland, Mel Stevenson has had some fruitful discussions with psychiatrists who are currently exploring the question of what makes for excellence in an eating disorder service. Other UK based parents can comment on this via the Eating Disorders Network UK Facebook page.
In Wales, Helen Missen, fresh from exceedingly hard work bringing the problem of a lack of specialist children's eating disorders services to the Welsh Assembly, has had a meeting with local psychiatrists and charitable organisations working on improving services for people with eating disorders, especially in rural areas. Their main emphasis has been on the importance of research to gather the evidence that is so necessary to gain funding and for underpinning services.
Also on the theme of research, Charlotte Bevan has been working with Professor Janet Treasure in gathering information about carer and professional education for a bid for better funding for eating disorders care. Requests for feedback on parent education can be found on Around the Dinner Table and the F.E.A.S.T. Facebook site. Several other members are also working with B-EAT on a joint carers' response to recent sad cases of severe anorexia nervosa and the question of the use of palliative care.
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Canadian Task Force News
The Canadian Task Force has developed information on provincial health care for the F.E.A.S.T. website and one task force member was asked to participate in an upcoming community awareness event put on by NEDIC. Another member attended 2 symposiums put on by National Initiative on Eating Disorders (NIED) and was asked to participate in a proposed future symposium on family-based therapy (FBT).
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Australian Task Force News
Planning for the Australian carer's conference to be held in Brisbane on May 24-25 2013 is progressing well. The conference is being hosted by F.E.A.S.T, the Butterfly Foundation, the Queensland Department of Health Eating Disorder Outreach Service (EDOS), and the Australian and New Zealand Academy for Eating Disorders (ANZAED) . Professor Daniel Le Grange and Professor Janet Treasure have been confirmed as keynote speakers. For more information visit: http://www.athomewitheatingdisorders.comor emailadmin@athomewitheatingdisorders.com
A number of F.E.A.S.T members are participating in the National Eating Disorders Collaboration (NEDC) in Australia. New members are welcome and the NEDC is inviting feedback on their new website |
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F.E.A.S.T. Family Guide Task Force (FGTF) Update
The FGTF is happy to announce that we are currently completing our first document: Family Guide to Neurobiology of Eating Disorders. We are finishing the final layout of this document and will have the printed product available at the F.E.A.S.T. conference in Alexandria. The document will also be available for download on the F.E.A.S.T. website in 2013.
The F.E.A.S.T. Family Guide Task Force thanks all of the professionals that have contributed to thise project!
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From the Exec utive Director's Desk
Laura Collins, F.E.A.S.T
It has been an enormous honor to serve as F.E.A.S.T.'s first Executive Director. As I prepare to step down December 31, let me describe how we started, and where we're going.
Ten years ago I knew nothing about eating disorders. I certainly did not know that parents of ED patients were being tragically and mistakenly excluded, pathologized, and left without resources to help their precious children. I was unaware of the chasm of assistance and the mountain of learning that parents must face to have a chance of success. At first I was angry. Then, I decided to be part of the solution. No family should have to face ED as alone and confused as my husband and I were.
I come from a family of activists and I am a writer: my first instinct was to expose the problems and spotlight solutions. I believed that well-informed families would be better caregivers and survive better as loving, connected units. I believed that when parents knew the options they would choose the best suited approach and then, like me, would go on to help inform and support others.
Staying silent was simply not in my makeup. But the path was never obvious and there have been many obstacles along the way.
Starting a community from scratch wasn't easy. It started with a book I wrote about our family's experience and the parents who contacted me after they read it. It grew because of a simple online forum that I and others built by word of mouth. As families went from crisis to mentors we developed a community that eventually formed a solid group that achieved legal status in 2008 under the name F.E.A.S.T.
No matter how passionate we are, or perhaps because of that passion, there have always been ideological and interpersonal tensions. We've seen changes in our leadership circle, challenges to our mission, and distractions inevitable in human interaction. Yet I'm proud to say our direction hasn't veered and our momentum has always increased.
We've gone from unknown to controversial to where we wanted to be: a place of respect and influence in many circles. We have been welcomed into collaboration with people and groups who had formerly been very resistant and even hostile to our parent-focused evidence-based stance. Membership rises daily and we almost have more queries than we can handle.
Far more important is the fact that we have helped countless individual families be successful AS a family in supporting loved ones to full recovery. Our presence and our interactions have changed attitudes and influenced policies and practices around the world. This is work done by parents, for parents, all over the world.
Our next challenge is to manage our growing size and complexity. When we began, I took on the role of leader to get things started. I have always looked forward to the day when we had parents ready to keep the energy and the mission fresh. I'm proud and confident that our new Executive Director, my friend and trusted F.E.A.S.T. volunteer, Leah Dean, is the person to develop and manage our organization in this new era.
Our important work continues under the wise leadership of an expanded team under Leah's direction. I look forward to supporting Leah and F.E.A.S.T. from my new position as Policy Director. I propose a toast to our origins, our present, and our future!
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Dear F.E.A.S.T. Member:
Thank you! You are receiving this newsletter because you are one of our 2059 members: families, clinicians, patients, and organizations from 41 countries. We depend on you and appreciate your continuing support and interest in F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders).
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F.E.A.S.T. Advisor News
Dr. Rebecka Peebles
and Dr. Daniel Le Grange presented at the Maudsley Parents Conference conference in Boston, Massachusetts on September 28, 2012. PowerPoint slides and video of Peeble's presentation are available on the Maudsley Parents site.
Dr. Stephanie Milstein, Carrie Arnold and Cindy Arnold presented at the National Eating Disorders Association (NEDA) conference in St Petersburg, Florida on Supporting Parents, Supporting Patients: The Role of Parent/Family Coaching throughout the Treatment and Recovery Process. Stephanie Milstein also will be presenting on parent coaching and use of parent support groups at the F.E.A.S.T. conference in November.
F.E.A.S.T. funded Mary Beth Krohel to staff the AED booth at the American Academy of Pediatrics in New Orleans in October. The pediatricians were very responsive to availability of this information. Mary Beth also staffed an AED booth at the American College of Emergency Physicians in Denver in early October. E.R. doctors were interested in the educational material once they realized it could save lives in Emergency Departments. The AED MCSTF created ER posters and brochures especially for this meeting. The brochure and poster will also be available in Alexandria and the brochure is now available on the F.E.A.S.T. web site.
Mary Beth Krohel also reports the family version of the AED Guide to Medical Management, which was written for Primary Care Physicians and other health care professionals, should be available by the end of the year. This is a collaborative effort with the Academy for Eating Disorders (AED) Medical Care Standards Task Force (MCSTF). F.E.A.S.T. has helped to distribute the original Guide around the world. It is currently available for download on the F.E.A.S.T. web site. To date, over 75,000 printed copies have been distributed and many more downloaded from various E.D. web sites.
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Collaborative Effort Improving Services in Australia
By Raye-Ann O de Regnier,M.D.
Care for Australian teenagers with eating disorders and their families is being transformed by a unique partnership between the University of Chicago, the Royal Children's Hospital Centre for Adolescent Health and the Royal Children's Hospital Integrated Mental Health Programs at The University of Melbourne. Dr. Daniel Le Grange, a F.E.A.S.T. Advisor and Professor of Psychology at the University of Chicago has been working with Royal Children's Hospital Adolescent Medicine specialist and Professor of Pediatrics, Dr. Susan Sawyer of Melbourne to create a hospital program incorporating outpatient Family Based Treatment (FBT) as the first step in treating stable teenagers with eating disorders. "Most parents are quite competent to start treatment of their adolescents at home using FBT," said Dr. Le Grange.
Before this collaborative program, a large percentage of teenagers were admitted to the hospital for initial care of their eating disorder and were hospitalized for up to two months. Many of the teens were readmitted over and over again and Dr. Sawyer was not satisfied that this was the best option for her patients. Now, patients are treated at home with their families and only hospitalized when they have medical or psychiatric instability. The first impressions of this program are that hospitalizations are much less frequent and teens are released back to parental care much sooner than previously. Drs. Le Grange and Sawyer are analyzing the outcomes of their program to report to a medical journal so that other physicians and psychologists can learn from their experience.
Dr. Le Grange praised Dr. Sawyer's vision in pairing evidence-based treatments from the field of psychology with the medical care for malnutrition provided by Adolescent Medicine Specialists. Along with research fellow Dr. Libby Hughes, the duo has received funding from the Australian Baker Foundation for an ongoing study to compare two different types of FBT in a research study designed to continue to improve the effectiveness of FBT. More information about the Royal Children's Hospital Eating Disorder program can be found on their website. Anyone from any part of Victoria or Australia is welcome to contact their Eating Disorder Program for advice and referral to relevant services in their area.
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"On Saturday we did our first restaurant meal. I stressed about this for days in advance, where to go, what to eat etc. I wanted to get as much of my stressing done in advance so I could be zen calm on the day!..... He was tearful throughout but bite by bite he got through the meal. Needed lots of support and prompting but he did it. Afterwards I hugely overtipped the waitress and thanked her and she said 'My sister had anorexia, if you ever need any help let me know' I sure picked the right restaurant!" F.E.A.S.T. Parent
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