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.
Thank you Judy for this piece – it sums up both the conference and the current situation internationally so well
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.
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
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.
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.
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.
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.
I love that this piece is centered in optimism while exposing the challenges of ED treatment (health system policy, provider burnout, limited resources, etc etc.). As a parent supporting an autistic teenager with AN and also a medical professional (not in the ED field), I have been so dismayed by the silos that ED treatment occurs in when it comes to comorbidities. My child has been summarily discharged from 2 programs in the US due to behaviors (which are ED related) and because they don’t ‘fit the mold’ of patients they expect to see in treatment. In my training, I was taught to fit my interventions to my patient, not that my patient has to fit my treatment or be shown the door. We have been left to piece it together and determine what works based on our knowledge of our child. We are having some successes but at a heavy cost to our family’s financial and mental health resources. We need so much more training and support. I love the task shifting idea and like many parents, very much want to do my part, but would also like to see others trained and available as resources for families supporting their loved ones through FBT. We need coaches and respite providers to support both refeeding and learning skills to manage the behavioral fallout that comes with the territory. If FBT is the gold standard, there needs to be a lot more work into supporting people with carrying it out with all kinds of kids.
I am so very grateful for the perspectives I can read about and learn from on this website.
A few comments so as to give realistic hope and confidence to UK parents.
I want to put in a good word for the NHS CAMHS services that DO work, for the clinicians who have fantastic skills.
(And — to guard against black and white thinking — talking about what may work well for one family does not diminish the reality and distress of the failures another family is facing.)
It’s good to hear that clinicians at the conference were so aware of the issues that we face. Although I tend to hear from parents when things are bad, I do also know of these positives:
In the UK we are lucky to have up to date NICE guidelines, at least for under 18s, which force the national health service to use the best evidence-based treatments — a family-based approach being right there at the top.
The devil is, of course, in the detail — some services think they’re offering ‘FBT’ and that’s it’s far from that….Some clinicians really need more training, and training does go on in many places.
So a lot of the time, our young people get the best treatment through the NHS, rather than having to hunt around for expensive private providers, who ALSO have waiting lists. (I notice that private providers are increasingly getting up to date as well — before many seemed to lag behind with older treatments).
The other thing we are lucky to have in the UK — for under 18s — is the “Access and Waiting time standard for children and young people with an eating disorder”. These meant In the years before Covid, more and more, the parents I talked to really had been seen within ONE WEEK of reporting an issue.
There were still areas that failed the target dismally, or manipulated things to appear to reach it, but overall there was rapid early intervention, and using a family-based approach. I believe hospital admissions went down.
Covid really did screw all this up. I don’t know if the NHS trusts were given a period of grace, for NOT meeting the waiting time standards any more. (Those standards came with a financial penalty).
The UK has the advantage that the expert panels, the people setting standards, do know their stuff, on the whole. They’re in agreement with what we, as knowledgeable parents, know and desire. For instance, there’s movement around treating the combination of autism and eating disorders a lot better. Some of the UK’s good official standards are no doubt thanks to FEAST members who sit on some of the official groups.
I get extremely cross about the things that don’t work, and at the same time, I think it’s realistic for many parents in the UK to expect they will get good care. Though I would ALWAYS recommend parents get themselves super-well educated, as there is so much to learn to get our children to recovery as smoothly and quickly as possible.