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Therapeutic Optimism

By Judy Krasna, F.E.A.S.T. Executive Director

Last week, I attended an impressive eating disorders conference in the UK. In her opening remarks, Dr. Agnes Ayton talked about the need for “therapeutic optimism” to counter the negativity and the glaring deficits in the system.

I was struck by how pretty much every speaker mentioned the failings of the treatment system in the UK. There was a palpable feeling of distress, frustration, and futility, like providers are treating eating disorders with one hand tied behind their backs due to the limitations, constraints, and deficiencies of the system. As someone who runs a global eating disorders organization, I can unfortunately assure you that this is not exclusively a UK issue, not by a longshot.

I was also struck by how every single speaker was genuinely passionate about treating eating disorders and by how pained they were by the current situation. The questions from the audience reflected this as well. And I was extremely impressed by the constant mention of including parents and families in treatment, which was truly music to my ears. Though the system may be getting it wrong, these providers are clearly getting it right.

There was a lot of talk about how covid crippled an already overtaxed system. While this is undoubtedly legitimate, I am concerned that somehow covid can potentially be used as an excuse to somehow justify the dysfunction.

One of the most glaring issues was the inability to be treated for eating disorders and comorbidity simultaneously. According to Dr. Mima Simic, depression is present in 50% of patients with eating disorders. We know that eating disorders are a risk factor for suicide. And yet, the system—pretty much every system in every country—seems to ignore these facts and not offer treatment which spans the eating disorder and the comorbidity, taking full recovery off the table for so many people. I find this personally heartbreaking because we experienced it first-hand.

To make matters even worse, the eating disorders sector is losing its workforce because it’s too hard to treat eating disorders. No one wants to manage the risky cases. Please excuse the cynicism, but it must be nice to have the luxury to walk away. It’s certainly not an option for us as parents.

One of the statistics that was mentioned at the conference is that the re-admission rate for inpatient treatment is 40-50%. That tracks with other countries throughout the world. It also means that treatment is failing miserably, despite what I can only assume are the best efforts of providers.

Are eating disorders difficult to treat? Obviously they are. But the thing is, they are treatable. I heard that at the conference as well. So, they are treatable illnesses, but they are not being successfully treated. What would be considered intolerable in other medical fields is somehow accepted in eating disorders treatment.

How do we improve the success rates of eating disorder treatment? That’s the million dollar (or pound) question.

Years ago, I attended the International Conference on Eating Disorders, and the keynote speaker was Dr. Vikram Patel. He gave a fascinating presentation about administering mental health treatment in low-resource areas. One of the ideas that he mentioned was “task shifting,” which according to the WHO is defined as shifting service delivery of specific tasks from professionals with higher qualifications to those with fewer qualifications or creating a new cadre with specific training.  Dr. Patel was quoted in this paper as saying, “It is meant to alleviate the heavy workload of specialists and to ensure that those with no access to specialists have a means of accessing some level of mental health services.”

Dr. Patel was referring to mental health treatment in India, but sadly I think that eating disorders treatment in many other countries qualifies as low resource.

As Dr. Patel was speaking, a few things occurred to me. One is that it seems to me that FBT (Family Based treatment) is a form of task shifting. Parents are trained as partners in treatment, to handle specific meal-based tasks. Evidence has proven that this is effective.

As I was sitting in another session during the same conference about dealing with suicidality in eating disorder patients, I started thinking that parents can be trained in DBT so that they can help manage their child’s distress, suicidal ideation, self-harm, and other extreme behaviors. Is this ideal? No, it’s not. But I think it’s viable.

Task shifting is something that I believe should be considered to alleviate the burden on the system. It can be used in different contexts. And I think it can work.

I am confident that there are solutions to the inadequacies of  any system. I am hopeful that improvement will happen. I am positive that people with lived experience must be included in creating this change. I see true collaboration in the UK between experts by profession and experts by experience. There is a real sense of “we’re all in this together” and genuine partnership.

Dr. Agnes Ayton made an interesting observation. She said that if you don’t have therapeutic optimism, you reinforce eating disorder psychopathology. I found that to be a very strong idea.

Eating disorders are not hopeless. Our kids are not hopeless. Treatment in the UK is not hopeless. In fact, some of the research presented at the conference was very encouraging. There is impactful work being done. There are so many clinicians and researchers out there determined to make the eating disorders field better. They are, and they will.

I truly hope that the eating disorder field embraces this therapeutic optimism. It will shape the way eating disorders are treated. It will provide the energy to persevere and the impetus to fix what is broken. It will reduce burnout and increase motivation. It can be key in improving outcomes.

I have full faith in UK clinicians and in our UK FEAST ambassadors to find ways together to make their system more effective and to overcome the significant barriers that stand in the way of better treatment. It can be done, in the UK, and across the globe. A little therapeutic optimism can go a long way to making this happen.

 

 

 

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7 Comments

  1. Poppy

    Thank you for this.
    My daughter has been very ill for 5 years with no improvement, I have repeatedly asked to be trained in ways that will let me help her at home but I have never received any. It would help by empowering parents that often feel so helpless with this illness and ensure solid,consistent help for their child even when the professionals aren’t around – which is most of the time!
    Parents are told their child has this illness “make sure they eat” and shoved out the door with no further guidance, by the time they have started to educate themselves the illness has such a strong grip on their child everything is 100 times harder.
    Educating and coaching parents from the start would definitely improve their child’s chances of recovery.

  2. Therese Waterhous

    Great article Judy. I also have followed the evolution of thought on treatment of EDs, and I agree with you that enlisting parents and others, maybe even others who are not “certified” has resulted in improvements in care and access to care. Here is an article that speaks to that, which I used in my AED panel talk this past year where we discussed exactly what you bring up here.
    Lebow J, Mattke A, Narr C, Partain P, Breland R, O’Brian J, Geske J, Billings M, Clark M, Jacobson R, Phelan S, Harbeck-Weber C, Le Grange D, Sim L. Can Adolescents with Eating Disorders be Treated in Primary Care? A retrospective Clinical Cohort Study. Journal of Eating Disorders 2021. 9:55 https://doi.org/10.1186/s40337-021-00413-9

  3. A Apple

    Thank you Judy, for your article.
    I live in the UK and have submitted a few letters of complaints to our local service provider regarding the failing ED system and how as parents we have been made to feel excluded and ill equipped to support our D.
    I have tried to raise many times, why in all other areas of health care are parents taught, educated and supported to look after their child with a diagnosed medical illness/condition…….but when it comes to a Mental Health condition parents are left feeling helpless, when all parents want to do is to help support their child recover.

    • Poppy

      Absolutely agree with you!
      I found that under child mental health services I felt excluded, often judged and not informed at all.
      Since moving to adult services I have found things are a bit better, I feel much more included as part of the team looking after her and they will ask me what’s the best way to look after her. I have a lot more faith that these people are doing the best they can because they are not assuming they know my daughter and defining her by the illness. It’s such a complex illness parents need all the education and support they can get and surely it’s a lot more cost effective to train parents straight away rather than risking the child getting so ill they end up in hospital.

  4. Chris

    I have also attended an international conference in the UK of eating disorder treatment professionals. Like you, I was struck by the negativity of the professionals.
    Since then, for the past 15 years, I have interviewed parents of kids diagnosed with anorexia nervosa. What I have learned is that most parents are so disillusioned with the negativity of professionals that they are treating their kids without involving a professional in the process, with surprisingly excellent results. There is no one single way to re-feed a child or teenager with anorexia nervosa –different approaches work with different kids. Therefore, parents, who are experts on their kids, are best positioned to decide how best to re-feed. Many if not most kids with AN are depressed because they are undernourished. Re-feeding cures the depression in many and possibly most cases. In any event, there is a lot to be said for an approach where you re-feed the kid to full weight-restoration, then wait awhile to see if the depression lifts, before addressing depression as a separate issue. Trying to address depression and starvation at the same time has a lot of problems and doesn’t have a base of scientific evidence to support it.

    • Judy Krasna

      I would not advocate for parents treating their kids without professional help if an option for competent and specialized professional help is available. I do think parents are best placed to re-feed their kids and I agree that many times depression is part of the ED and not a co-morbidity but this is not always the case. The first line of treatment should always be nutritional/weight restoration. But eating disorder care should cover comorbid conditions as well when they exist outside of the ED.

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