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Kicking off today is NEDAwareness Week Feb 21-27. NEDA has created a daily calendar of ideas to help spark the conversation and theme: It’s Time To Talk About It. Find ways to get involved within your community and help the continuation of support, research, edcuation and improved treatment resources for those who suffer with Eating Disorders!

The mission of NEDAwareness Week

Our aim of NEDAwareness Week is to ultimately prevent eating disorders and body image issues while reducing the stigma surrounding eating disorders and improving access to treatment. Eating disorders are serious, life-threatening illnesses — not choices — and it’s important to recognize the pressures, attitudes and behaviors that shape the disorder.

What is NEDAwareness Week?

NEDAwareness Week is a collective effort of primarily volunteers, eating disorder professionals, health care providers, educators, social workers, and individuals committed to raising awareness of the dangers surrounding eating disorders and the need for early intervention and treatment.
How NEDAwareness Week Works

This year, NEDA is calling for everyone to do just one thing to help raise awareness and provide accurate information about eating disorders. NEDAwareness Week participants can choose from a huge range of ways to contribute: Distribute info pamphlets and put up posters, write one letter for Media Watchdogs, register as a Volunteer Speaker or host a Volunteer Speaker, coordinate a NEDA Walk, or arrange interactive and educational activities such as panel discussions, fashion shows, body fairs, movie screenings, art exhibits and more. As an official NEDAwareness Week participant you can be involved in any way that works with your schedule, resources, community, and interests. These events and activities attract public media attention – on local, national and international levels.

 

It’s uplifting to see the continuation and commitment towards treating and caring for those suffering with eating disorders, along with supporting and educating the families involved in their loved ones care.

Harmony Place licensed by the state office of Mental Health is the first residential program in the state of New York to open and work specifically with adolescent girls and boys ages 12-17 providing an additional resource for families vs sending their children out of state:

Harmony Place at St. Joseph’s Villa is the first program in New York State to provide residential treatment exclusively for adolescents struggling with eating disorders. Located on the suburban St. Joseph’s Villa campus in Rochester, N.Y.,
 
Harmony Place provides treatment and support for up to eight girls and boys, ages 12 to 17, who have had chronic difficulty maintaining recovery through medical inpatient and outpatient programs.

During the 4-6 week stay, a highly structured environment, evidence-based approaches and a caring, specialized staff help partici¬pants regain stability over their illness. Family involvement is a critical component of the program, empowering parents with the skills and understanding needed to help their teen achieve long-term recovery at home.

HARMONY PLACE program features:

-Round-the-clock supervision, with daily medical monitoring

-Safe, structured, therapeutic environment designed for adolescents

-Licensed nurses, board-certified psychiatrists, psychologists, masters-level therapists and dieticians
-Utilizes the Maudsley-Informed approach to re-feeding, on-site emphasizing family therapy, education and hands-on meal preparation

-20 + hours mandatory group therapy and 8+ hours individual & family therapy weekly

-Ability to address co-occurring disorders like chemical dependency, anxiety and depression

-Two-hours academic tutoring per school day
-Three months support following discharge


Post discharge there is a 90day follow up so that patients and families have the proper support they need to help within the transition.

For further information please contact Helena Boersma at St Joseph’s Villa      1.877.520.2667       

UCAN

 

I often, as many other parents of children suffering from an eating disorder, find myself envisioning what the future may hold for our daughter when she is older, well beyond the preparatory stages of ED recovery-maintenance, living a full, healthy and ED-free adult life will be like; especially when there may come a time when she decides upon a life-long partnership, marriage and/or family of her own.

Wouldn’t it be comforting and assuring to know that the care your son or daughter is receiving now will also be available for him/her and their partner-spouse when and if the time comes?

Thankfully some forward-thinking clinicians from the UNC Eating Disorders Program are working to provide just such a program, which is at this time addressing Anorexia Nervosa, and can continue to implement these necessary and supportive elements towards long-term health and maintenance for those who have loved ones suffering.

The UCAN Program

UCAN is a research program funded by the National Institute of Mental Health and is part of the UNC Eating Disorders Program. UCAN aims to help couples work together in the treatment of anorexia nervosa. Couples participate in UCAN over a period of six months and return for follow-up treatment three months after the end of the original six-month period. Your participation in UCAN can help you gain new confidence in facing anorexia as a team and can help us understand how best to involve partners in the treatment of eating disorders.
What Couples Can Expect
Treatment Team
Couples can expect that their treatment will be conducted by trained, licensed professionals from the UNC Eating Disorders Program who are experienced in the treatment of eating disorders.
Comprehensive Assessment
All participating couples have four assessments during which they complete questionnaires and interviews with a clinician, and are videotaped having a discussion with their partner about an anorexia nervosa-related topic.
Comprehensive Treatment
During their participation in UCAN, couples will be randomly assigned (like a coin flip) to receive 20 sessions of either:
• Couples Therapy
• Family Supportive Therapy
In addition, the patient also receives comprehensive treatment for anorexia nervosa from the UNC Eating Disorders Program at no additional cost, including:
• Individual Psychotherapy
• Psychiatry Consultations
• Nutritional Counseling

 

*For further information about registering for the program contact at: UCAN@unc.edu or phone: (919)966.3065


 

 
I previously wrote a tidbit about this study back in January: The Horse In The Barn but here is an additional interview-vid with Dr Lock himself to further elaborate.
shanti

Eating Disorder Support

 

The National Eating Disorders Association-NEDA has issued a Call for Proposals for the September ’09 Conference sagaciously titled: Reshaping Our Future: A Vision for Recovery, Research, Attitudes and Action!

The goals of this conference are:

 

– Help family members, treatment professionals, health educators and activists to connect and share useful and supportive information that can be transformed into action.
 

– Familiarize attendees with the latest developments in the field of eating disorders and the implications of this new knowledge for prevention and treatment.

– Reduce the associated stigma of eating disorders and generate awareness about the realities of the illnesses by educating conference attendees, the media and, in turn, the general public, policymakers and opinion leaders.

– Provide a national convening to promote inclusiveness, enthusiasm, energy, optimism and a vision of hope for all conference attendees.

 

 Workshop presenters can have a focus within the areas of family, treatment, special issues, outreach and education. The conference will be held in Minneapolis, Minnesota September 10-12th, and the deadline for conference committee consideration on submissions is Wednesday, March 25th.

For further information contact Director of Programs-Laurie Vanderbloom info@nationaleatingdisorders.org – (206)382.3587.

NEDA 2009

 

Is this year’s theme during NEDA’s Awareness Week 2009- February 22-28 and there are so many ways to get involved within your community– let’s all work towards the continuation of creating greater access to quality ED care-treatment, prevention and awareness!

FAQ for potential NEDAwareness Week participants.Find events & Coordinators in your area. Research into eating disorders focuses on causes, prevention and cures.
Source: National Eating Disorders Association

Eating Disorders are illnesses, not choices! NEDA’s mission is to support those affected by eating disorders and be a catalyst for prevention, education and access to quality care.
NEDAwareness Week – February 22 – 28, 2009 – “Until Eating Disorders Are History” – throughout the US, Canada and other countries

Bulimia Study

 

When caring for an adolescent suffering with an eating disorder for any length of time, you soon realize how invaluable earlier diagnosis and treatment become in making purposeful and healthy strides forward, as well as any necessary changes and re-strategizing needed to better support a loved ones recovery process.

And while there is a better knowledge base available regarding eating disorders today, studies and research of “what works” and “what doesn’t” in the real day to day of those living with this illness, and how to better train, educate and provide for those treatment services are still slowly surfacing.

Dr James Lock, whom many a parent are familiar with from his work and book: Help Your Teenager Beat an Eating Disorder is spearheading one of the Largest-Ever Bulimia Study  involving adolescents suffering from bulimia through Stanford University:

…psychiatrists at the Stanford University School of Medicine and the University of Chicago are seeking volunteers for the largest-ever randomized controlled trial of bulimia treatments for adolescents.

Only two small randomized trials have previously been done in this age group. “We desperately need more information,” said James Lock, MD, PhD, professor of psychiatry and behavioral sciences at Stanford and the study’s senior investigator. Lock is also director of psychiatric services at the Comprehensive Eating Disorders Program at Lucile Packard Children’s Hospital.

Prior bulimia-treatment trials focused on adult patients, Lock said, which is why the National Institute of Mental Health awarded his team a five-year, $2 million grant to compare bulimia treatments for young people. Full-blown bulimia affects 1 to 2 percent of adolescents, and another 2 to 3 percent display significant bulimic behaviors, Lock noted. Female patients outnumber males by five to one, he said.

The team will study three treatments that may help adolescent bulimics. Study subjects will be randomly assigned to receive 20 outpatient consultations using cognitive behavioral therapy, family therapy or individual psychotherapy. Cognitive behavioral therapy is widely recognized as the preferred bulimia treatment for adults, whereas family therapy is used in teens with anorexia nervosa. Individual psychotherapy has succeeded as an alternate treatment for bulimic adults and adolescents.

Interested individuals should contact research assistant Brittany Alvy at (650) 723-9182.

The pathology Lock hopes to heal stems from poor body image and an unhealthy focus on rigid dieting. Strict dieting sets up patients for lapses of control—binge-eating episodes. After binge eating on thousands of calories, patients purge with vomiting, laxatives or excessive exercise. They then feel guilty over their loss of control, fueling further negative thoughts and deepening the downward spiral.

Cognitive behavioral therapy works on changing patients’ behaviors and thinking patterns related to food and to body image. The therapist aims to help the patient stop thoughts that overemphasize the importance of weight and shape and end severe, destructive dieting. Family therapy focuses solely on eating behaviors.

The patient’s parents are involved in every therapy session, and the underlying goal is to change the home environment so that it reinforces healthy eating and discourages dieting. “In this treatment, we see parents as a resource to facilitate behavioral change,” Lock said. Individualized psychotherapy, rather than targeting eating, examines underlying life problems that contribute to negative self-image. 

“We hope early intervention will become a chronic, long-lasting strategy,” Lock said. Instead of treating bulimia in adulthood, “after the horse is out of the barn,” early treatment has a better shot at causing a lasting cure, he added.

About Stanford University Medical Center Stanford University Medical Center integrates research, medical education and patient care at its three institutions — Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children’s Hospital at Stanford. For more information, please visit the Web site of the medical center’s Office of Communication & Public Affairs at http://mednews.stanford.edu/.

About Lucile Packard Children’s Hospital Ranked as one of the best pediatric hospitals in the nation by U.S.News & World Report and Child magazine, Lucile Packard Children’s Hospital at Stanford is a 272-bed hospital devoted to the care of children and expectant mothers. Providing pediatric and obstetric medical and surgical services and associated with the Stanford University School of Medicine, Packard Children’s offers patients locally, regionally and nationally the full range of health care programs and services — from preventive and routine care to the diagnosis and treatment of serious illness and injury. For more information, visit http://www.lpch.org/.

Umbrella Erin Hael

Anyone involved with eating disorders knows all too well the commitment, expense, and time that treatment and recovery encompass. There are no quick fixes on this journey towards reclaiming ones’ Life back from a devastating illness that can lead to chronic health debility and even death if left untreated.

Just mention the word “insurance” to anyone acquainted with eating disorders and you will undoubtedly get a credible grunt of frustration or despair when it comes to what insurance companies “allow” for treatment and follow up care. And for those of us who have loved ones requiring the most intense level of care in either residential ED programs and/or partial-day programs for any length of time, insurance becomes yet another demon to lock horns with; and certainly not what caregivers, families and sufferers need tacked onto an already onerous battle to save someones Life.

We have had many a battle with insurance to get our daughter the care she deserves, and to push beyond the bullying that desperate parents face when told your child cannot get the medical services s/he needs until you’ve taken out a second mortgage, gone bankrupt, taken out exorbitant loans because extended coverage was denied, but by all Dr recommendations is absolutely necessary in continuing care and treatment.

The manner at which eating disorders are covered by insurance (and obtaining equal access to quality care is another needle-in-the-haystack!) is still quite crude that my blood boils when listening to parent after parent exhaustively stating the same heartrending scenario over and over. And speaking with parents and sufferers outside the US, you find some of the same- sometimes even worse.

Well, after stating all this rather negative reality, there is some hopeful news to share with the now infamous New Jersey Blue Cross/Blue Shield class action federal court case which restores my belief, coupled with the progression of Mental Health Parity, that 2009 will continue to move forward and keep chipping away towards change in improved coverage and treatment of eating disorders that is well overdue:

 
January 10, 2009 Horizon Blue Cross/Blue Shield of New Jersey has tentatively settled a class action pending in federal court in Newark, New Jersey involving reimbursements for medical expenses relating to the treatment of eating disorders. The terms of the settlement must still be approved by the court.

Although Horizon covered treatments related to eating disorders (primarily anorexia and bulimia), including hospitalization, outpatient treatment, psychotherapy and nutritional counseling, there were benefit limits on such treatments.

Under the settlement terms, Horizon has agreed to pay claims for eating disorders that were denied because they exceeded the plans’ maximum benefit for non-biologically based mental illness.
Horizon has also agreed to give parity treatment to eating disorder claims for Horizon insureds in the future and to enhance its appeals procedure by providing the right to select review by an eating disorder specialist of all claims denied on the basis of medical necessity.

Father Christmas

JRR Tolkien

Take, and welcome joy within you:
Showers, flowers, powers,
Hatfulls, capfulls, lapfulls,
Treasures, measures, pleasures,
All be yours to enjoy!
-Celtic Devotional
__________________

Even though both our daughter’s are well beyond the fantasies of a “real” Santa, the story of the Tomtem, mythical Finnish elves, (and these days what I would give for a Tomtem to help cook and clean!) and snuggling up to endlessly open each envelope within Tolkien’s Letters From Father Christmas, the magic and our imaginations still shine with wonder and grace for the season– no matter what.

The Spirit of the Holiday is quite powerful if you take the time to remember and reflect on what truly is important and meaningful. Such a simple and beautiful gift to give oneself, but not always easy to do.

Tis the season of gift giving and ever-expanding commercialization of Christmas
as we modern people know all too well. This busying and running here and there has robbed the “sacredness of the season” as I refer back to the wise words of John Matthews:

 

….we ask and are being asked, “What do you want this year?” There are certainly things that we would quite like, things that we hope will be brought for us, but these are not the same as our wants. True wants are not small things satisfied by prettily wrapped parcels: they are the immense needs of inner space that can be overwhelmed by all our little wants and yearnings. To consider our real needs– the things we lack in our lives – is often too frightening, opening up an abyss of need that calls our very existence into question… Our real wants eat holes in us: never resting, never loving, never greeting, never finding, never seeking, never ever being satisfied deep down. These ravenous wants define our treasures so truly. They create a Christmas list that no store could supply: time to stop and really enjoy, in a space of quietness and contentment… Space to give and receive love reciprocally. The grace to seek and find our spiritual joy. Freedom from the tyranny and burden of other’s expectations, of what others think. Acceptance of ourselves as we truly are.

This season our wish is for our youngest daughter to really begin believing, once again, within her own inner gifts, her endless possibilities to live a full and happy Life, without ED. That she can accept herself as she is, feel safe, trust herself and others, allow her body and mind the time it needs to heal; and acknowledge her own true needs.

It again, seems so simple.

I also wish for all of you to give yourselves the gift of time to listen to your own true needs, find an inner abundance of Peace and Love, and allow time and space to fully ENJOY this holiday season!

shanti

* Many Heart-Felt Thanks to all who have emailed and written with your thoughts and support! We feel very blessed to have such caring individuals in our lives– especially at this time– THANK YOU! Marielle the gift-basket was so incredibly generous and such a surprise…. words can’t begin to convey our appreciation. -XO*

Turkey

 

Yes, it’s already December and I’m still concocting a various array of T-Day leftover meals. The latest- and hopefully the last turkey creation!- curried turkey potpie was a hit, but with one plate empty at the table.

Life for our family, once again, is on temporary halt to regroup, realign, and reaffirm former, as well as new recovery priorities-goals; and up the ante a bit to get beyond the bump-in-the-road our daughter is experiencing wrestling free (though as of late, resembling more acquiescence) from the dangerous clutches of anorexia.

Leftovers…

Ironically we were in this familiar territory the same time last year. And as a parent, when you’ve seen how far your child has come through his/her ED recovery, how hard the fight gets fought, seeing and knowing they can do it; it feels like suddenly your footing on that long arduous climb is becoming loose and weak. You’ve been tossed back down, the wind has been knocked clean out — “GASP!” Some confusion sets in, frustration, even some anger– “Damn you friggin’ (I use a word with a bit more gusto and power) ED!” It’s time to take action, as most of us know, eating disorders love the waiting-game, the delay, the postponing… we’ve already been there too.

Adolescence is a time of rapid growth and development, and a body taxed with an eating disorder at this time cannot do fully what it was meant to do normally unhindered. The reports regarding bone density and calcium loss within eating disorder sufferers are not new but it is a necessary reminder of the severity of this illness and why treatment should not be delayed, since significant changes do take place before decreases in bone structure become evident, and some of these changes can be permanent after a certain age.

Leftovers in this scenario can also be remembered as requiring 100% full nutritional support and adherence- without question, without exception. This time of year brings forth both a welcoming joy towards celebration with family and friends, but as well an unwelcome increase of stressors and worries that pose some unique challenges for those with eating disorders.

There has been a wide variety of posts and informational resources in this regard which is fantastic. One incredibly busy and committed individual interviewing as of late is Dr Cynthia Bulik, who is the director of the UNC Eating Disorder Program prompting:



Keep your support team on speed dial and call them at any time during or after a party. Talking relieves the pressure. You’re not overburdening them. They will undoubtedly have stories to share, too.– Potlucks are your friends. Don’t hesitate to take a food you prepared that feels safe enough to you so that you will have at least one manageable entrée.– Lavish holiday spreads don’t have to be the enemy. If faced with one, channel your inner Boy Scout or Girl Scout skills and be prepared! Before stepping in line, and before getting a plate, evaluate the options. Mindfully consider which foods you’ll sample, portion sizes and whether you feel comfortable trying a “feared food.” Make a decision and stick with it!– If your treatment team has given you a meal plan stay on track so you aren’t starving when you get there.– Listen with your heart, not your head. Hear the happiness and caring in a person’s tone when they tell you that you look “so much better.” They are saying they care about you. Don’t let the eating disorder lead you to misinterpret those words in a way that deprives you of hearing that people really care about you.— Get Real! People too often have a fantasy about how “perfect” the holidays are going to be. When family members fail to live up to unrealistic expectations, it might be tempting to restrict or overeat in an effort to feel better temporarily. Try to anticipate some of the possible emotional traps in advance so you can cope (and maybe even laugh) when you encounter them.– The well-known HALT slogan works for any type of recovery. Don’t let yourself get too hungry, angry, lonely or tired. This is especially important over the holidays.– ‘Tis the Season to Forgive, so forgive yourself if you have an eating slip.– Try your best not to skip appointments with your treatment team. It’s an important time to stay in touch with people who can help.

 

Dr Bulik also continued with an “Eating Pressure” interview recently conducted by CNN worth viewing.

And there is an equally interesting qualitative study: “Total Control? Eating Disorders and Emotional Responses to Food” conducted by the University of Adelaide in Australia with the result podcast and interview available from CQ University’s International Program of Psych-Social Health Research Dept that looks at emotional responses to images of food presented to adults with eating disorders, and using the qualitative methodology to further measure and explore issues of self-control, food fears/responses, CBT-cognitive behavior therapy as a means to help adjust maladaptive ways of thinking and behaving. I think this could also be extremely beneficial to younger ED sufferers as well, and crucial for helping them deal more cohesively with their “fear” foods that many times get downplayed or ignored within many treatment programs by only having the patients eat the foods, or avoid them altogether in their meal plans.

And yet more leftovers, as lastly I found BBC’s-Radio4 All In The Mind Segment by Claudia Hammond insightful in regards to the variations in some residential programs and getting additional perspectives from patients who are going through the program, their personal thoughts and views. The “partnership” message from the Phoenix ED program in the UK director, Dr Thompson was also welcoming to hear in having patients play a significant role in their treatment and recovery process along with more collaborative and balanced strategies. The numbered tables that residents eat at are something quite interesting as well, with Table 1 being a level requiring most support and moving towards Table 3 with more independence, and thusly Table 2 being 50/50. I think to me what stands out is the ability to remain open to making changes and being creative in strategies, and not simply applying practices to ED care and treatment that simply don’t always work for the individual patient.

So while I’m still musing over Thanksgiving tidbits and at the same time putting up the Christmas lights and bringing out the boxes of holiday decorations, we’ll keep fighting and rallying behind our daughter to continue to move forward within her next level of recovery. Regaining some ground lost with deeper learning and strength gained (we all make mistakes and have setbacks- with or without an eating disorder!) We know we’ll get through this together and once again her place at the table will be filled when she is ready… until then leftovers may be on the menu for awhile.

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