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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LeahDean_US
Dear fellow ATDT parents,

I am preparing a 15 minute presentation for a professional ED workshop titled:  A Triple Perspective on Barriers to Eating Disorder Treatment.

I am representing a parent-caregiver point of view, and I am hoping to share some quotes from parents in the trenches during the talk.

If you are interested in helping, please respond with short quotes that identify some of the barriers you have faced as part of the journey from pre-diagnosis through recovery.

I won't use any names, but I would like to say what country you are from to illustrate that many barriers facing parent carers are universal.

Thanks in advance for your help. The description of the workshop is below: 
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A Triple Perspective on Barriers to Eating Disorder Treatment

Mark Warren, MD, MPH, FAED | The Emily Program—Ohio, (formerly Cleveland Center for Eating Disorders), Cleveland, Ohio, USA

Leah Dean, BA, | F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders), Milwaukee, Wisconsin, USA

Mirjam Roelink, BS, MS | Recovery Warriers L.L.C., Amsterdam, Netherlands

 

Three members of the Patient-Carer Committee—a clinician, a former patient, and a parent—will offer unique, multi-perspective insights into (perceived) barriers to treatment, in order to spark a dialogue on efforts to improve patient care, strengthen family and community support services, and empower parents to be effective and engaged caregivers. Each presenter will be given equal time and will draw upon personal experience as well as the reported experiences of peers. Barriers presented from the clinician perspective include the lack of access to a full clinical team—especially well trained medical providers, the lack of access to a full range of care services, the tenuous and often misunderstood relationship between research results and clinical results, inadequate treatment options to support connection, commitment and motivation for patients/families, and the need for better quality evidence based treatments overall. Barriers from the patient perspective will focus on internal factors such as anosognosia, stigma, shame, negative attitudes towards seeking help, complex fears, and the walls of resistance that must be broken down in order to allow for recovery. Barriers presented from the parent perspective will focus on external factors, and include compromised standards of medical care, financial limitations, legal complications, lack of communication between treatment team professionals, and the marginalization, blaming and disempowerment of parents. Each presenter will offer solutions for how to identify and address barriers to treatment that pose potential harm to patients and families, and which can derail the best efforts of clinical care. Workshop participants will be able to relate to the barriers presented through a personal and experiential narrative that is authentic, genuine, and heartfelt; and, will better empathize with the frustrations these barriers cause for patients and carers. Learning

Objectives:

Recognize the importance of including multiple perspectives in formulating a treatment plan, and learn to listen to clinician, patient and carer experiences, observations and concerns in a manner that illuminates the specific barriers that are preventing

Identify universal and pervasive barriers to effective treatment and integrate into their practices strategies for facilitating better workarounds that strengthen the patient/parent/clinician relationship and maximize the potential for recovery.

Advocate for improvements to early identification and first interventions, educate others in order to reduce shame, stigma and to debunk myths, provide accessible information about eating disorders that improve public understanding and promote evidence-based treatment.

 

Eating Disorder Parent Advocate
AED Member
Former F.E.A.S.T. Executive Director, 2013-2016

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AUSSIEedfamily
Dear Leah

You can use my name. Negative judgement of fathers by clinicians/professionals. I am a tradesman from a Mechanical Engineering background and a call it as I see it person who is honest & straight forward an willing to do anything I can. In the early days of our D's relapse I was perceived as overbearing interfering dominating father and was at times kind of sidelined.  These clinicians/professionals are supposed to be skilled & trained at getting past making personal judgements and be able to sort out the fathers stress, anxiety, etc & lack of diplomacy and distill the essential good stuff from the father rather than write him off alltogether. I am often due to my passion & enthusiasm seen as rude & a bit of a Bull in a China shop and then judged for my lack of clinical professional savy. Instead of judging me why dont these professional take me as an honest, hard working father that might need a bit of friendship & mentoring rather than immediate judgement & then avoid me. Engage with me teach me skill me. The clinicians & professionals have had years of university training & years of professional politics to be where they are.

Give the enthusiastic passionate fathers a go, dont judge them and abandon them before you get to know & understand them & give them an opportunity to learn from you!
ED Dad
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Rayney
Hi Leah,
We found initially professionals such as doctors and nurses thought I was being a neurotic mother ringing up saying there is something not quite right with my d then 14 years old, because she was not wanting to eat (claiming she didn't have an appetite), losing weight (initially 10 lbs then 33 in total) and her periods had stopped.  I was told by these professionals that I would cause an issue if I made a fuss about her eating!!! A real barrier as this meant my daughter was not diagnosed until 5 months after my first contact with a professional.  
Another barrier I feel was the response of professionals during a relapse.  My daughter weight restored a year after diagnosis and then refused to eat for a week or drink from 3 days.  Again I was told it's typical for anorexia and to try and get to find out the issue, she even fainted in the doctors surgery.  The Community Adolescent and Mental Health Service stated that they would not intervene until she was again at a low BMI !! This would have undone all our good work and impacted on her recovery, they did put her on a waiting list for more therapy (stating that she had been discharged too soon, by them) but that appointment came 21months after this relapse.  We sort private therapy and she is now well into recovery and doing marvellous. Another barrier is nurses when you ask them not to disclose the child's weight (to prevent a relapse) and they do this anyway! This causes big issues with the fight to continue to feed my daughter.
I think these barriers are universal and I wish you the best of luck with your presentation, if you need any more information feel free to ask, Rayney.
17 years old, well into recovery and taking full control of food herself and gaining weight, she's loving life at the minute, it does get better!!
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Kali
Hi Leah

Barriers to treatment in our case initially were the learning curve that it takes to understand more about the illness and the fact that I am a working mom. So I didn't really understand what I was seeing happen to my d. Working made it very difficult to supervise meals and get my d. to appointments, but moving forward there were periods where I was able to arrange to work at home part of the week, which helped enormously. 

There were also some cost-related barriers.
I was not able to find an FBT therapist in our area who was accepting new patients who was in network for our insurance and their sessions typically run around $300 for an hour out of pocket. 

My daughter presented differently than some of the other sufferers I've read about on ATDT. She lost a pound, then another, then another, slowly. Because it was not a massive sudden weight loss, the MD did not pick up on it at first. I wish that more MD's could be well versed in eating disorders and trained to give parents helpful guidance when their child first presents with an eating disorder. Practical things such as which books to read, how to work with providers, what type of treatment to set up, and how to feed someone with anorexia. I learned all of those things from reading around on ATDT, not from our medical providers.

Kali

Food=Love
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Foodsupport_AUS
Some barriers to treatment in Australia we had:

When initially unwell when it seemed as though she needed hospitalisation it took more than three weeks for the assessment and even when assessed as needing immediate admission it took over a week to find a bed, even though already meeting all criteria for medical instability.

Inability to offer any system of back up for home re-feeding - we revolved in and out of hospital numerous times because there was no system of support to assist with things like NG tube back up, and no option for longer hospitalisation. The same 5kg was lost and regained on numerous occasions over more than 12 months. 

No psychological support for a desperately suicidal child in a hospital that was medically orientated towards re-feeding only and offered little ability to cope with the mental health issues or even offer compassion

In a psychiatric hospital little understanding of how to re-feed a child with severe anorexia and make eating not optional

The ongoing issues of voluntary treatment for eating disorders with a condition where it is normal to feel ambivalent yet is life threatening. Asking someone to sign a contract that they will gain weight and will comply and not treating them if they can't just makes it harder for them to recover. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Torie
From USA

For us, the barrier was not cost (we have good insurance), and it was not geography (we are lucky to have a world-class ED treatment program 45 minutes away).  It was ignorance.  We simply got bad advice from the first two medical professionals we trusted to help our d.

We needed exactly one thing from the medical community:  Back-up for a missed meal.  That's all.  We  just needed someone to say (to us, but in front of her): "If she can't finish a meal, bring her (and the meal) here."  We didn't even need to do that - we just needed her to know we would.

Instead, her therapist gave us the bad advice (in front of d) to let her take control of eating, and when she loses enough weight, send her to _____.

Her pediatrician told her she didn't need to gain any more weight - that it would actually be OK if she lost some - at a time she most definitely needed to gain more weight.

Eventually, we found our way to CHOP, and the excellent doctor there told us to bring our d back in if she couldn't finish a meal.

Memo to the insurance companies and healthcare payers:  It would have cost you a fortune if we had followed the bad advice to let her lose enough weight to qualify for residential care.  Early diagnosis and treatment - and, specifically, back-up for a missed meal - allowed our d to recover at home, with very minimal financial cost to you.

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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keepsmiling
Instead, her therapist gave us the bad advice (in front of d) to let her take control of eating, and when she loses enough weight, send her to _____.

We have also been given that same appalling advice - and also that it's ok to leave her where she is (massively underweight) as she obviously doesn't want to get better.

The other thing we have found is that, because D is so entrenched and resistant to treatment but can maintain her weight at almost exactly the same (within about 0.4 kilos) week after week, they just don't know what to do with her and have often suggested that she will never get better, reduced her care to counselling once a week, if that, and are just biding time until she turns 18 and they can sign her out of their system.

The only way to get help and advice that actually makes a difference is from other parents on this forum who encourage, support and advise, never criticise but do encourage you to fight.  Without them we couldn't do this.
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sk8r31
We had a pediatrician that told my d that her father was to blame for her ED.  We also had d's T tell us that FBT would not work for our family.

We live in a smaller community, and had to travel 90 min one way to a regional center to find professionals with good, up-to-date evidence-based training, once we ditched the team members (RD and d's T) who were parent-blaming.  
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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deenl
Hi Leah,

I am living in the Netherlands and we had a bit of a nightmare until my husband and I gained enough knowledge and understanding so we could take the lead in our S's recovery.

Pre diagnosis: The GP is the gate keeper to further treatment in The Netherlands. My h and I brought S because of sudden weight loss. Dismissed our concerns. We pushed on and had about 5/6 weeks of the runaround between professionals until ultimately he was sectioned due to suicidal plans.

Inpatient: Parents told not to visit every day. (I ignored this rubbish) They followed GPs assessment that S was depressed. Did not force food. Provisional diagnosis: depression and ASD. Ignored h and I when given contra indications to ASD. Ignorant of characteristics of highly gifted children and how this can mimic ASD symptoms. When our son entered their care he had lost 1/4 of his weight, when he left this had deteriorated to 1/3!

The legal system is NL is so difficult in these situations. Children of 12 can refuse treatment unless they are in imminent danger of dying. Our s was in that grey area where he could easily die but no one could say for sure. There is no taking account of anosognosia.

Our S was held against his will under a law that puts the doctors in charge. They liaise with parents but if there is disagreement parents are overridden. It was horrific for us especially when we knew they were on the wrong track.

It took months for a diagnosis. I have a feeling this was because he was a boy, only 12, not fat phobic, no body dysmorphia, no diagnosed family members with EDs. Although if they had asked about strange eating habits, I could have told them about my granny (6.5 stone, osteoporosis of spine), cousin (5/6 white foods only) and uncle (periods of food refusal and dramatic weight loss)

There was a lack of options in treatment. Even when they started suspecting ED the only thing they could offer was the eat or have a supplement, refuse supplement then ng, repeat meal after meal. This traumatised our s (ptsd traumatised) and their only other option was 24/7 sedation which was deemed too medically risky. Out of desperation they let us take him home and luckily, I found this site and we did it ourselves with the help of a pediatrician.

Everyone in the Netherlands has health insurance so that has not been an issue.

Good luck with the presentation. How will you ever hold it to 15 mins only!

Warm wishes,
D


2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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EC_Mom
Obstacles:

1. Our otherwise much-loved pediatrician had some old-school ideas, including telling us we were done refeeding when d reached her previous weight (she went on to stabilize 25 lbs higher than that, at which point the irrational thinking also diminished). It took me awhile to realize we needed to find a specialist. 

2. There was no FBT nearby and it took me a long time to realize that we needed FBT, not just any old therapist who claims she treated eating disorders (and proposed some cockamamie ideas that, in retrospect, I'm glad I realized were cockamamie even without FBT knowledge).

3. Insurance coverage took hours and hours and hours of my time to fight out after the fact.

4. For refeeding the number one thing I needed, as FoodSupportAUS wrote, was backup that if she didn't eat, I could take her to an ER (or wherever) and get NT tube. Or just the THREAT of doing that would have been huge. I had no short-term leverage for eating, except what I scrounged up myself. That tube threat would have made my life much much much easier.

5. Despite some insurance coverage, we are spending thousands and thousands on treating AN (and also its fallout on siblings and parents).

Thanks for doing this, can we get a report?
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BattyMatty_UK
Oh gosh, where do I start?

Far too many obstacles for a 15-minute talk!!

(Bit later...)

Sorry, I tried to list them, but it was getting like War and Peace. There were obstacles at virtually every stage and from every direction. The entire experience was a fight from start to finish, and afterwards, too.

Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
 
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mamabear
Barriers:

Access to any care in rural area. NOONE KNEW ANYTHING ABOUT EDS.

Putting ten year olds into the exact same " treatment" as 17 year olds while inpatient. They are a totally different animal.

NOONE seeming to understand anything about the huge amount of food/fats to get a kid through puberty and ed at the same time.

Dietitians hung up on their version of " healthy" eating.

CONPLETE LACK OF FOLLOW UP CARE IF CROSSING STATE LINES. As far as that place is concerned my daughter never existed.
Persistent, consistent vigilance!
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