Monday, December 15, 2014

Advocacy Mondays: 5 Questions Answered

by Jennifer Whisman,  West Virginia U.S.A.

1.  How did you find your path to parent-advocacy? 

I’m not sure I ever made a conscious decision to become involved in parent advocacy.  I’ve spent most of my professional career involved with individuals with autism spectrum disorders (ASD), their families and educators.  Over the years, I’ve had the privilege of meeting many parents of children with ASD who became advocates for their children.  Sometimes these parents were initially reluctant or struggled to express their opinion but over time developed more self-confidence and a “voice” about issues pertaining to the care, treatment and education of their child.  Collectively, parents of children with ASDs have changed the types of supports and education their children received in a relatively short time frame.  It seemed natural that I would then become an advocate for my own child and others with eating disorders.

2. What does your advocacy work consist of/ how do you define advocacy?

I have been involved in a variety of capacities with F.E.A.S.T. and more recently, in my own community.  When my daughter was diagnosed 8 years ago, we found virtually no services and supports in our community.  Our pediatrician told us our daughter did not have an eating disorder – it was just a “diet gone bad”- and we were unable to find a psychologist willing to support us in implementing family-based therapy.  Not giving up easily, I scoured the internet for resources and upon calling one of the major hospitals involved in eating disorder care, was told to immediately order and read “Eating with Your Anorexic” by Laura Collins and “Help Your Teen Beat an Eating Disorder” by Locke and LeGrange.  After reading both books, I had so many questions- Laura was one of the first people that I reached out to.  About that time Laura was beginning to think about developing a nonprofit which would provide information and support to families by other families dealing with eating disorders.  She asked if I would serve on a newly formed parent committee.  This group of energetic folks went on to develop F.E.A.S.T.  Since that point I’ve had the opportunity to serve on the board and executive committee;  help develop some of the materials for the website; serve on the conference and fundraising committees; and oversee the newsletter for a couple of years.

Thankfully, my community has started to change too.   Several years ago, a young psychologist, a physician and nutritionist developed a part-time outpatient clinic at a local hospital to address the
needs of individuals with eating disorders.  This past spring I started volunteering with the clinic weekly, meeting with families of newly diagnosed individuals.  The first thing I give them is the F.E.A.S.T. web address, the family guide series and a tour of the Around the Dinner Table Forum. As part of my efforts, I was also asked to speak at a local provider conference, talk with medical students, residents and psychology interns and sit on a committee which is trying to improve local services.  Our state has also developed a provider directory for families and providers, and a provider
listserve.  I’m not shy about posting materials on our provider listserve about evidence-based practices.

3. What change do you hope to affect?

My dream is for families and individuals with eating disorders to be able to access quality, evidence-based treatment immediately in their communities. Within my own community I would love for families to be able to access services in a warm, inviting setting where they receive not only well-coordinated diagnostic, medical and psychological care, but also support and resources as they begin their journey.  I’d also like to see those in our state who are providing treatment to individuals with eating disorders begin offering FBT as a first-line treatment.   Our provider directory indicates that only one psychologist in the state provides FBT even though nearly all of the providers reported they are treating children, adolescents and young adults.    Our local clinic fills a tremendous need in this regard but the demand for services in the region exceeds availability and I’d like to see the clinic expand to a full time standalone clinic.   Our community has come a long way in the past 8 years but we still have a lot of work to do.

4. What are some of the challenges/frustrations inherent to this type of advocacy?

I think my biggest frustration is that systems and sometimes, people, change slowly and sometimes not at all.  Most of the providers in our state are very well intentioned and do provide various therapies (e.g., DBT, CBT, etc) but I’m frustrated by the lack of initiative to further their skills around FBT.  My fear is that many parents do not have information about the evidence behind various treatment modalities for eating disorders and therefore, cannot advocate for treatment which might provide their child with the best chance of a full recovery.   I suspect many families end up sending their children to programs out of state, even some very young children.  While their children may improve drastically in these programs, I feel many families are ill prepared for the continued work that has to occur at home when their child returns.

5. Top 5 things you would share with a family facing a new diagnosis?  

1.  Become an informed consumer and don’t be afraid to ask questions.  

2. Ask your provider to help you develop a backup plan and a backup plan to the backup plan.

3. Take care of yourself as best you can.  Your child needs a healthy caregiver.

4. This is a marathon for many of us- have hope that your situation will and can improve.

5. Remember who your “real” child is without the eating disorder and try to find something enjoyable to share with your child each day.   Because eating disorders are divisive and you will be exhausted on many days, it may be hard to find something positive about your situation.  That positive moment with your child will get you through each day.

Wednesday, December 10, 2014

Towards Establishing the Role of Family Support in the Treatment of Adults with Anorexia Nervosa

Guest Post by Stephanie Knatz, Ph.D.University of California, San Diego

Family-based treatment (FBT), developed and manualized by James Lock and Daniel Le Grange, has an indisputable amount of evidence affirming its effectiveness for the treatment of adolescents with anorexia nervosa (AN). But what about young adults? There remains work to be done to be able to answer this question empirically. Studies evaluating FBT in samples of young adults are extremely limited. 1 The average age of adolescents participating in family-based treatment in rigorous FBT trials is roughly 14-15 years.2 As such, whether FBT is effective, and to what degree it works for individuals suffering at older chronological ages are questions that science has only begun to do the work to answer.

Whether FBT is an effective treatment for young adults with anorexia is a reflection of a broader theoretical question about the role of family support and involvement in the treatment of adults with AN. It is worthwhile to remember that the most widely used treatments for adult AN are delivered in an individual format. 3 If one were to seek psychological treatment for AN with no intention or pretense about what to expect, it is highly likely, if not almost certain, that they would be placed in individual therapy where therapeutic family involvement would play a minimal role, or be absent altogether. This is true for both young adults and those further along the age spectrum, and irrespective of the level of family involvement. For instance, a 21 year living in her parent’s home would be likely to be recommended for individual treatment despite her dependence and level of interaction with her parents.

It is unclear as to why individual treatment for AN has prevailed for so long, and continues to be the most commonly used treatment. Decades of evidence suggest that currently available treatments, most of which are individual, are not effective and the evidence supporting these treatments is weak4. Evidence-based standards on the type of treatments that adult with AN should receive do not exist because of the lack of data on effective treatments for these individuals3.   This is particularly alarming given the high mortality rates and propensity towards chronicity that is associated with this disease. Clearly, we need to find improved ways to help adults suffering from this illness.

The lack of effective treatments for adults with AN points to the need to critically assess how current treatments are insufficient, and most importantly, what new treatment modalities should be considered and explored further. Borrowing from principles of FBT, the question arises about whether therapeutic family involvement should be considered, and the way in which familial support can be mobilized to improve outcomes.

When considered closely, there are biological, empirical, and theoretical reasons to believe that a paradigm shift towards increased family involvement may improve outcomes.

AN is a psychiatric disease with unique features that differentiate it from other illnesses. AN is unique in that it is one of the only psychiatric problems characterized by what is referred to as “ego-syntonicity,” which refers to the way in which individuals with AN see their symptoms and behaviors as consistent with their fundamental personality and beliefs. This terminology, although old, accurately captures a cardinal and puzzling symptom of this disease, which is the desire to maintain the symptoms and behaviors of AN, and a lack of desire to relinquish them. Individuals with AN are often staunchly opposed to changing their behavior and/or restoring necessary weight, even when faced with compelling medical evidence.  Whereas an individual with depression does not want to be depressed, an individual with anorexia most often would prefer to maintain their anorexia and will go to great lengths to do so. Even in those who recognize the need for change and can verbalize the desire for recovery, it is often difficult for them to change their behaviors in accordance with this desire. Individuals with AN often appear to lack insight into the nature and scope of their symptoms.  For instance, where it may be easy for others to see the extreme dangers associated with a low body weight, it is not uncommon to see cases where this is rejected by the individual suffering. The lack of awareness about having a psychiatric illness is referred to as anosognosia. This is an important feature to consider because it raises the risk of treatment nonadherence and points to the need for external support. Because AN is characterized by starvation, physiology is affected in a strikingly comprehensive way. Lack of insight, or “anosognosia”  and fusion with AN symptoms and behaviors may be caused or exacerbated by gross changes in the brain that occur as a result of starvation. These features have important implications for treatment. An individual who has limited ability to see their disease as problematic, and yet who is physically compromised, is likely going to have difficulty adhering to treatment recommendations despite the medical risk and may need external assistance to do so.

The lack of insight and puzzling propensity to engage in physically deleterious behaviors that affect health in serious ways can be explained by the powerful neurobiological drives that underpin this disease.4 Brain imaging research has allowed us to understand biological reasons that explain why individuals with AN engage in restriction by allowing us to use technology to look inside the brain. Although these symptoms seem puzzling and counterintuitive from the outside, when we observe what is occurring in the brain of an individual in AN, we see that behaviors such as restriction are not at all arbitrary, but in fact are occurring for reason and may actually have a functional purpose for the individual. It is with this information that we have established that this disease is less of a choice than it is a sentence. We now understand that for an individual with AN, stopping these behaviors may be akin to swimming against a powerful current. Imagine that you are swimming in the ocean and suddenly a strong rip tide begins to forcefully pull you away from shore. No matter how hard you try to swim, you are drifting further and further away from shore. You are getting more tired and yet getting nowhere. You give up, recognizing that the current is powerful, and that there is no amount of swimming that can get you back to shore.  Providing individual treatment to someone with anorexia may be akin to someone standing on the shore with a loud speaker giving you tips and strategies for how to swim Harder! Faster! More Efficiently against a rip current that is grueling if simply not impossible for you to fight. There’s a slight chance that there are some tips that may get you closer to shore, but it would surely be easier for someone with a boat to throw you a line and tow you back. Assuming that someone with anorexia can fight this riptide with no direct assistance is a risky gamble, and reinforcing the idea of trying on their own by providing individual help, may be misguided especially if there are reinforcements in the form of support standing by eager to provide assistance. This is often the case with family members of individuals with AN; they are desperate to help but have not been given permission nor the appropriate tools to do so.  What about allowing the riptide to pull you if you know that you will eventually reach the shore? Research shows that you’d be floating with the tide for five to seven years.5 What will you have missed on shore? What effects will that have had on you? Will you be able to keep your head above water for all that time? Will you survive unscathed? Calling on reinforcements by enlisting understanding, help, and support from family members may avoid prolonged illness, which drastically increases the chances of a good prognosis.6 The metaphorical boat and tow line can look many different ways in recovery, but signifies a more direct approach to support and intervention.

These reasons are not particularly novel or unique to adults. Rather, these are facts that have been known and well documented and that underlie the premise of family involvement in FBT for adolescents. FBT acknowledges that a powerful drive prevents adolescents with eating disorders from making appropriate decisions around food, weight, and eating that are ultimately health-compromising and calls upon parents to be involved to the extent that is necessary to ensure that their adolescents achieve and maintain good health. FBT has demonstrated good outcomes in ability to restore weight and reduce eating disorder cognitions.7  The mechanisms by which this is achieved have not been formally identified, but what distinguishes this treatment from other commonly used treatments is the heavy emphasis placed on familial support.

Let’s return to the question that was originally posed: What about FBT or more broadly, a “family-involved treatment” for adults? It is a sensible question given the evidence in favor of family-based treatments for adolescents and the fact that there are no other effective treatments available for adults with AN. Moreover, we understand that the unique physiological and biological considerations associated with this disease may render individual-focused work insufficient and/or inefficient.  

What exactly differentiates an adolescent with AN from an adult with AN? The question is pertinent because the answer elucidates important factors to consider when applying familial support to adults. There are three primary distinctions that can be made between adults and adolescents.8

1. Greater Severity
In a study evaluating differences between young adults and adolescents with eating disorders who presented to an eating disorder program, young adults had higher global severity scores, a longer period of weight loss, greater amounts of total weight loss, and a history of experiencing a greater number of eating disorder behaviors.9  Furthermore, most often, adults have often experienced a protracted course of illness with instances of failed courses of previous treatment.8  Taken together, these data indicate higher levels of severity and the potential for a poorer prognosis due to a longer duration of illness.

2. Access to Family Support
Family support is more variable in adults. Adults may be more financially, emotionally and/or socially independent from family members. However, US census dates suggests that the age at which adults are reaching financial independence has changed. Roughly two-thirds of young adults in their early 20’s receive financial support from their parents. 10 Since it is estimated that 95% of those with eating disorders are between the ages of 12 and 26, it is likely that many adults with AN are still somewhat dependent on their family system. In an article summarizing experiences of working with families of adults with AN, Treasure et al., 2005 note that adult sufferers with severe AN often live with their families or rely heavily on their support.

3. Legal Rights
Persons above the age of 18 are treated differently by our legal system due to their chronological age and regardless of their developmental standing. This has important implications in the treatment of AN due to the developmental stunting that can occur with a protracted illness. A 25 year old with a 10 year history of AN may be developmentally and socially different from someone else of that chronological age. Despite this, legal adults are considered the holders of privilege in the right to consent to treatment and confidentiality .

These considerations help inform the potential benefit and viability of family involvement in  adult AN. The greater likelihood of severity inherent in adult AN indicate a need for more comprehensive treatments that includes a family component. Higher levels of severity may further exacerbate physiological and cognitive symptoms that make it increasingly difficult for individuals to make recovery-oriented decisions independently. Severity may also indicate a lack of ability to manage independently and the need for increased support. Given the data we have about availability of familial support, it is likely that a significant portion of individuals suffering from AN have access to familial support in the form of parents, partners, or other loved ones. Higher levels of illness severity in combination with the relatively high access to familial support propagate an argument TOWARDS therapeutic family involvement that could improve outcomes.

The last factor to consider is the issue of consent and legal privilege held by an individual. Legal rights become irrelevant when an individual can agree to familial involvement and see the potential that this may hold. However, due to the factors that characterize AN that were described above, there are commonly situations in which individuals will actively reject or refuse involvement and help from their family members. In situations where there is financial dependence or other leverage held by support persons, those factors can be made use in order to get an agreement for collaboration.  These issues related to age of majority, both legally and developmentally, have led experts in the field to recommend that family-based treatment be modified to be more collaborative when being used with young adults.10

Efforts are underway by many clinical research groups across the world to develop, test, and disseminate improved treatments for adults with AN that incorporate a focus on family/carer support. Chen et al., 2010 published a case series detailing outcomes on four young adults who underwent FBT. Modifications were made to the traditional FBT approach in an effort to be more collaborative due to age. Although very preliminary, results were promising with 3/4 achieving weight progress into normative weight ranges. Continued efforts are in process to test a young adult version of FBT. Janet Treasure, Ulrike Schmidt , and others pioneers in the area of carer involvement in the treatment of adults with AN have developed a novel treatment for adults with AN called MANTRA (Maudsley Model of Treatment for Adults with Anorexia), based on a contemporary understanding of the numerous facets underlying AN, and which incorporates familial involvement. 11 Bulik et al. have created U-CAN (Uniting Couples Against Anorexia), a couples-based treatment for individuals with AN and their partners.12 In conjunction with Laura Hill and the Center for Balanced Living, UCSD has developed and is currently testing an intensive family treatment program for adults and their loved ones that combines familial support with neurobiology for a new treatment approach that we are calling NEW-FED. NEW-FED focuses on improving clients’ and families’ understanding of the neurobiology underlying AN and teaching carers and clients strategies and skills to manage symptoms constructively using neurobiologically-based skills.

Given the strong argument in support of therapeutic family involvement, treatment studies are desperately needed to 1) provide empirical affirmation that involving familial support in the treatments of adults with AN is effective, and 2) to elucidate precisely HOW familial support should be mobilized to be most effective in supporting recovery.

1.   Chen, E. Y., le Grange, D., Doyle, A. C., Zaitsoff, S., Doyle, P., Roehrig, J. P., & Washington, B. (2010). A case series of family-based therapy for weight restoration in young adults with anorexia nervosa. Journal of Contemporary Psychotherapy, 40(4), 219-224.
2.   Couturier, J., Kimber, M., & Szatmari, P. (2013). Efficacy of familybased treatment for adolescents with eating disorders: A systematic review and metaanalysis. International Journal of Eating Disorders, 46(1), 3-11.
3.   Bulik, C. M., Berkman, N. D., Brownley, K. A., Sedway, J. A., & Lohr, K. N. (2007). Anorexia nervosa treatment: a systematic review of randomized controlled trials. International Journal of Eating Disorders, 40(4), 310-320
3. Wilson, G. T., Vitousek, K., & Loeb, K. L. (2000). Stepped care treatment for eating disorders. Journal of Consulting and Clinical Psychology, 68, 564-572.
 4. Kaye, W. H., Fudge, J. L., & Paulus, M. (2009). New insights into symptoms and neurocircuit function of anorexia nervosa. Nature Reviews Neuroscience, 10(8), 573-584.
 5. Steinhausen, H. C. (2002). The outcome of anorexia nervosa in the 20th century. American journal of Psychiatry, 159(8), 1284-1293.
 6. Fichter, M. M., Quadflieg, N., & Hedlund, S. (2006). Twelveyear course and outcome predictors of anorexia nervosa. International Journal of Eating Disorders, 39(2), 87-100.
 7. Lock, J., Couturier, J., & Agras, W. S. (2006). Comparison of long-term outcomes in adolescents with anorexia nervosa treated with family therapy. Journal of the American Academy of Child & Adolescent Psychiatry, 45(6), 666-672.
 8. Treasure, J., Whitaker, W., Whitney, J., & Schmidt, U. (2005). Working with families of adults with anorexia nervosa. Journal of Family Therapy, 27(2), 158-170.
 9. Fisher, M., Schneider, M., Burns, J., Symons, H., & Mandel, F. S. (2001). Differences between adolescents and young adults at presentation to an eating disorders program. Journal of Adolescent Health, 28(3), 222-227.
 10. Loeb, K. L., & le Grange, D. (2009). Family-based treatment for adolescent eating disorders: Current status, new applications and future directions. International journal of child and adolescent health, 2(2), 243.
 11. Schmidt, U., Renwick, B., Lose, A., Kenyon, M., DeJong, H., Broadbent, H., ... & Landau, S. (2013). The MOSAIC study-comparison of the Maudsley Model of Treatment for Adults with Anorexia Nervosa (MANTRA) with Specialist Supportive Clinical Management (SSCM) in outpatients with anorexia nervosa or eating disorder not otherwise specified, anorexia nervosa type: study protocol for a randomized controlled trial. Trials, 14(1), 160.
 12. Bulik, C. M., Baucom, D. H., Kirby, J. S., & Pisetsky, E. (2011). Uniting couples (in the treatment of) anorexia nervosa (UCAN). International Journal of Eating Disorders, 44(1), 19-28.
 13. Kaye, W., Wieranga, C., Knatz, S. et al., (2014). Temperament Based Treatment for Anorexia. European Eating Disorder Review.

Dr. Stephanie Knatz is a clinical psychologist and program director of the adult and adolescent Intensive Family Treatment Programs (IFT) at the UCSD Eating Disorders Treatment and Research Center. In addition to directing the IFT programs, Dr. Knatz is also involved in UCSD’s treatment development research initiative to improve eating disorder treatment by translating contemporary neurobiological findings into applied clinical treatment models. Through this initiative, Dr. Knatz and others at UCSD are in the process of developing a family-based neurobiological framework for the treatment of anorexia. Dr. Knatz is currently overseeing the development, testing and implementation of a novel clinical treatment program for adults with anorexia and their family members (A-IFT), which integrates novel treatment strategies developed at the clinic. 

Tuesday, December 9, 2014

F.E.A.S.T.'s Advocacy Program: What we do, Why we do it, and How much it costs.

Did you know?
Part of F.E.A.S.T.'s Mission is to Advocate for Caregivers in the Professional ED Community.

Advocacy Budget:

Advocacy for Caregivers is one of our most expensive programs because it involves travel, registration fees, exhibition fees and membership fees.
F.E.A.S.T. is a member of the Eating Disorder Coalition and pays Membership fees for two directors to join the Academy for Eating Disorders. We attend and exhibit at the AED's Annual International Conference. F.E.A.S.T. also sends one representative to the bi-annual NIMH Alliance for Research Progress meetings in Washington, DC.

We would like to begin exhibiting beyond the ED field to child andadolescent medical professionals, for example, but do not have a reliable enough donor base to budget for this. F.E.A.S.T. has also done fundraising for other important initiatives. We raised $14,000 in 2014 for the Charlotte's Helix genetic database project, and we raised $2,600 to contribute to the first printing of AED's Guide to Medical Management for eating disorders in 2011.

EDC Hope Circle Membership $500/year
AED Membership Fees for 2 Directors $500/year
AED Exhibit Table $2000/year
AED Conference Registration, Travel & Hotel Costs $4,500/year
NIMH Travel $1,500/year
Hundreds of Volunteer Hours - PRICELESS!

Some Direct Results of
F.E.A.S.T.'s Advocacy Efforts:

Eating Disorder Coalition & F.E.A.S.T. Collaborations:
EDC Logo
EDC Lobby Days:
GatheringF.E.A.S.T. Members for EDC Lobby Days to visit and tell their stories at US Legislative Offices, including a special Lobby Day for F.E.A.S.T. Conference Attendees.

Congressional Briefing at the US Capitol:
"Facts and Concerns About School-Based BMI Screening, Surveilance and Reporting":
In 2014 F.E.A.S.T., BEDA, AED, and STRIPED worked together with the EDC to revise a 2009 "Talking Points" document to produce a new support document for a "Dear Colleague" letter sent to the US Center for Disease Control (CDC).(view PDF)

Academy for Eating Disorder & F.E.A.S.T. Collaborations:

"Ask a Caregiver" Livestream Webinar
Leader of the AED FBT SIG proposed and helped to organize an "Ask a Caregiver" Webinarat our 2014 Dallas Conference.This event was livestreamed to more than 100 ED professionals and caregivers around the world. The recorded video has been viewed over 1200 times.

"Advantages of Brain Disorder Language from the Patient/Carer Perspective"
AED Panel Presentation by 

F.E.A.S.T. Founder, Laura Collins, at the 2012 AED Annual Conference in Austin, TX, leading to article,"The term 'brain disorder': a compass or a map?", in the journal: Advances in Eating Disorders: Theory, Research and Practice Volume 1, Issue 1, 2013
AEDGuide toMedical Management:
Parent Advocate, F.E.A.S.T. Founding Member, and F.E.A.S.T. Advisor, Mary Beth Krohel, helped to form the AED Medical Care Standards Task Force (now the Medical Care Standards Committee). She has worked tirelessly on the creation and distribution of the AED Guide to Medical Management: "Eating Disorders--Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders." F.E.A.S.T. helped raise funds for the 1st print edition of the Medical Guide, and distributes copies at professional and caregiver events.

"Do Carers Care About Research"
AED Panel Presentation byF.E.A.S.T. Founder, Laura Collins, at the 2010 AED Annual Conference in Salzburg, Austria

F.E.A.S.T. - AED Working Relationships:
F.E.A.S.T. members and volunteers actively participate on AED Task Forces and Committees, and have been invited to contribute to workshops, panel discussions, and journal articles.

AED Recognitions:
Mary Beth Krohel (2012) and Laura Collins (2014) were awarded the AED's Meehan/Hartley Award for Public Service and/or Advocacy.
F.E.A.S.T. Family Guide Series

F.E.A.S.T.'s outreach to the Professional ED community has allowed us to create valuable educational resources about eating disorders fro the general public.

Each booklet in this series brings together an international group of leading ED researchers and clinicians to answer common questions by caregivers with factual, evidence-based information. These guides are available free for electronic download, and printed copies are available by visiting this page on our website.

Other Actions Taken by the F.E.A.S.T. Board of Directors:

Some Indirect Results
of F.E.A.S.T's Advocacy Efforts:

Building Trusting and Respectful Relationships by:
  • Bringing Caregivers and Professionals together at conferences designed for caregivers.
  • Showing up year after year at professional conferences and lectures.
  • Educating ourselves to effectively advocate for our children with ED professionals.
  • Standing up to ask questions that are important to caregivers in a room of professionals.
  • Adding a caregiver's perspective to discussions about treatment methodologies.
  • Understanding the limitations and constraints that professionals face and offering constructive solutions, not just criticism.
We know these efforts are making a difference by seeing:
  • Caregivers being invited to attend and participate at professional conferences.
  • Caregivers being invited to serve on planning committees.
  • Professionals asking to speak at our conferences.
  • Professionals reading our caregiver's forum and referring families there.
  • Treatment centers seeking experienced caregivers to provide peer mentoring to new families.
  • Treatment providers creating more resources for families.
  • New parents coming to the Around the Dinner Table Forum having already begun treatment services that involve families.
  • Professionals interacting with caregivers on social media, holding twitter chats and creating discussion groups, etc.
  • And, the list goes on...a list that would have been much shorter five years ago.

Monday, December 8, 2014

Advocacy Mondays: 5 Questions Answered

By Nicki Wilson

1. How did you find your path to parent advocacy?  


My oldest Daughter, Emma, was displaying clear signs of an eating disorder at the beginning of 2011. We faithfully headed off to the family Dr. confident that all would be sorted with a ready diagnosis and subsequent clear pathway of treatment to certain recovery. Our experience, unbeknown to us at the time, was typical of the majority of families in our situation not only in our country, New Zealand, but around the world. It was frightening, distressing, devastating! Like most parents / carers of loved ones with an eating disorder we negotiated and navigated our way through a range of barriers to her recovery: from the shocking lack of knowledge and access to evidence based treatment in the medical world, to the isolation and shame and stigma among family and friends. 

It was when we found F.E.A.S.T., and the Around The Dinner Table Forum, that we truly gained an understanding of the illness our daughter was battling, and learnt how we could play a role in her recovery. The support, advice and understanding that we received online enabled us to put an end to our daughter's suffering and rebuild our family as a whole, and each of our lives individually, back to the "normal" happy state we were in prior to the arrival of the Eating Disorder.

During our journey to Emma's current hard-earned physical and mental wellness, we yearned for contact with others on the ground, with whom we could share our fears, horror, hopes and ideas. We asked clinicians to pass our contact details on to parents who may like to connect with us, but were told this was not possible for legal (privacy) reasons.
So as soon as I could see the light at the end of the tunnel, I put up notices in Dr surgeries and hospital waiting rooms inviting others to a get together for carers at a cafe in town. The response was gratifyingly positive. Very quickly a group of local parents began gathering together regularly. We learnt that in the despicably abnormal world of eating disorders, what was going on in our lives was normal. The support and understanding of peers was comforting and validating, and the information sharing empowering.

The founders of EDANZ, who set up this not for profit organisation 7 years earlier to lobby for better services in Auckland (the largest city in the country, one hours flight north of where I live in Wellington) heard about what I was doing in terms of caregiver support, and by then, lobbying among health professionals and schools, and asked me to join their Board.
EDANZ has now developed a national presence and we focus on three principal areas: advocacy, education and caregiver support. Just over two years later I am now the chair of EDANZ. I have to say this was not a role I sought - in fact I did turn down the request a couple of times before agreeing to it. I was concerned mostly that being in this role would limit my availability to continue to offer support to caregivers & lobby for better services in my region.

2. What does your advocacy work consist of/how do you define advocacy?

Advocacy is speaking up, speaking out, providing accurate and useful information to audiences who will benefit directly or can influence or assist those who can.
I take every opportunity to spread the message of the seriousness of EDs, the current inadequacy in knowledge and training among clinicians, particularly primary health care providers and the desperate need for better access to evidence based treatment. I have been interviewed for press and radio on several occasions, sometimes with disappointing results (my words misquoted, misrepresented or out of context) but usually worthwhile if only for the purpose of getting the EDANZ freephone number out to those in need who may not have known about us.
I’m making inroads by running a tutorial with 5th year med students as they go through their 6 week psych block (so little, but two hours where there was nothing previously) This has lead to further opportunities to present to groups of health professionals and interested parties.

3. What change do you hope to affect? 

1.   Shifting society’s belief that EDs are a selfish choice of vain teenage girls with a desire to control their lives, to the knowledge that people with EDs are suffering dreadfully with a biological illness that is potentially deadly but with diagnosis and treatment, full recovery is possible.

This entails educating (reprogramming) doctors, parents, teachers... to recognise signs and symptoms, and insist the sufferer participates in treatment.

2. Improve access to effective treatment. Lobbying for more informed, evidence based treatment, available to all.

4. What are some of the challenges/frustrations inherent to this type of advocacy?

The prevalence and strength of the myths and misconceptions - the resulting stigma towards sufferers and their families, and apathy from those who could make a difference.

Personnel and resources – so much need, so little time and manpower.

5.  Top 5 things you would share with a family facing a new diagnosis?

1. Full recovery is possible.   

2. Learn as much as you can – FEAST and ATDT!

3. No shame, no blame – don’t waste precious time and energy looking for a cause, get on with treatment

4. Take care of yourself and the rest of the family too – siblings suffer terribly with ED in the home

 5. Be confident and strong – Know that you are your child’s best advocate and greatest supporter.

Nicki is a F.E.A.S.T. Board Member and active volunteer.  She lives with her family in New Zealand.