Eating Disorders: Is it too risky to work with patients with EDs outside of a medical setting?
I wrote this piece for the British Association of Counsellors and Psychotherapists (BACP) Private Practice Journal. Scroll down for journal version and mobile friendly version
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Eating disorders (EDs) and in particular, Anorexia Nervosa has long been recognised as a complex and difficult illness where if the patient requires admission to a medical unit, the risk of a poor outcome is high. A difficult relationship with food is rarely where the disorder begins or ends. There are mental, nutritional, medical, behavioural and often social problems that orbit the central relationship with food.
Many interventions start with a General Practitioner (GP), who are responsible for initial diagnosis and the coordination of care. Commonly this means a patient will be weighed and have their blood taken to check physical health. A good GP will also consider broader issues, investigating a patients life circumstances. This serves to identify risk factors as well as protective factors, such as friends and family. They then determine if a referral to specialist units or eating disorder specialists is needed. These specialists can be individual eating-disorder-focused cognitive behavioural therapy (CBT‑ED) or the Maudsley Anorexia Nervosa Treatment for Adults (MANTRA) in London
If a patient becomes so severely ill they require admission to a medical unit and acute medical care, a MARSIPAN checklist assessment is conducted to consider, BMI, recent food intake, whether the patient consents to treatment, the risk of re-feeding syndrome and to establish an integrated care plan between psychiatrists, doctors and medically and psychiatrically trained nurses.
Interventions by a GP and a medical unit both stress the importance of collaborative care between professionals of different disciplines, the patient and their social support network. This approach is backed up by The NICE guidelines, Eating disorders: recognition and treatment Dec 2020, which recommend treatment must be multidisciplinary and coordinated between services and involve the person's family members or carers (as appropriate).
This, of course, makes sense. EDs manage to affect most aspects of a person’s life. Treatment - even invasive medical treatment, needs to address the patient holistically, but what happens when, as therapists in private practice, we receive an inquiry from a new client with an emerging eating disorder, or an old client develops one? These clients potentially live in isolation with their ED. Without a holistic team of professionals and family members to support them. How should we treat these clients… should we treat them at all?
My BACP accredited post-grad diploma did not cover EDs. It surprised me at the time. Having worked with adolescents and young adults before training, I had some idea of their rising prevalence in society. What I didn’t know (and is humbling and slightly shameful to admit now) is the extent of the complexity and severity of EDs.
One of the many psychological complexities of EDs is the ‘eating disorder voice.1’ - a near-constant internal voice that someone experiences when living with an ED. This feels like living with two brains, one remembers enjoying food and balanced relationships with it and their body and the other is full of pain and lies about food and their body.
Early in my career, I met this ‘eating disorder voice’ in a client. They presented a range of severe mental health issues, including ED. With all the preparation from my diploma, I naturally took on the ‘voice,’ without blinking. My supervisor at the time suggested it may be disordered eating rather than an actual disorder and to stick with the patient to see where it leads.
The first time I felt underskilled was the realisation that this ‘voice’ wasn’t like other serious mental health conditions. Having run sexual abuse survivor groups for five years previous to starting a private practice, I’d worked with a range of complex presentations. However, one distinction that this ‘voice’ did not want help. This was because the ‘voice’ served a purpose. It had a goal—to dramatically change the body at any cost. The second time I felt underskilled was the phone call I received from the ‘voice’ while in hospital after a suicide attempt. It had said it hadn’t lost enough weight, became overwhelmed and made an attempt on its life.
What had I natively (stupidly!) taken on? I asked my therapist friends and peers about their experiences of working with ED, they told me:
“I don’t work with eating disorders.”
“It’s far too specialised, so I won’t work with that.”
“Unless I were part of a joined-up care team, I just wouldn’t do it.”
EDs have the highest mortality rate of any psychiatric disorder, from medical complications associated with the illness as well as suicide.2. Over 2020, child and adolescent eating disorder services of the UK National Health Service have seen almost a doubling in the number of both urgent and routine referrals.3. This is on top of a steady 37% growth in hospital admissions from 2018 – 2019.4. It’s hard to find data to determine the effects of the Covid-19 lockdown on eating disorders. However, between social isolation, food insecurity, pressure to lose weight/get fit and lack of face to face clinical appointments, on a societal level it is hard to imagine number of eating disorders staying the same or getting better.
I received an obvious message from my peers: counsellors don’t work in isolation with EDs. Then I thought about my relationship with the ‘voice’ and the client it lived within. They had had struggled to get to therapy to begin with, and now three months in it felt like we trusted each other, even enjoyed each other's company. Surely, I thought to myself, we’ve got this far—something must be better than nothing? I wanted to believe that, but this belief was not enough to justify continued work with the eating disorder voice in isolation. It had become life and death - faith and my ego were not enough to get this right.
I developed a modality of working with ED in isolation that allowed me to feel like I was working ethically, holding the client’s well-being and safety as paramount. Here are the five aspects of that modality that I now consider before working with a client that presents with an ED.
1. Contract with the client that the therapy will work towards further clinical interventions.
Within the therapy room, we can explore all sorts of feelings and experiences. These can be directed to involve the ED but can also be about anything else. However, I will contract with the client and make time to be directive, working with the client to get broader clinical care (GP, BEAT, specialised units, etc.)
2. When working in isolation, do not work in isolation, even if it is informally.
While a client may not be known to formal clinical care teams, I encourage clients to identify and disclose an ED to their informal support network—family, friends, tutors or lecturers. As counsellors, we need to accept that 50 minutes a week is a tiny drop in the ocean regarding our client’s well-being. We need our clients to realise this too and proactively find other sources of support outside therapy.
3. Assess whether there are other mental health or neurodivergent presentations.
Knowing when there may be other factors influencing a client’s behaviour is essential for assessing your ability to work with them. Learn about other associated conditions and disorders (spectrum-based disorders, OCD or repetitive behaviour) that can interplay with an ED. Determine whether that is something you are able to support.
4. Honest conversations with yourself about capacity.
The nature of human beings is that we all bring different strengths and vulnerabilities to any relational situation. I would never say that one client is more challenging work than another. However, I do know that my capacity for certain complex issues varies. One counsellor may have plenty of resilience for clients with experience of relational trauma, while another may have plenty of capacity for bereavement. EDs, on a very human level, come with complicated and sometimes contradictory feelings and pain. Recognise and understand your capacity for this area of work.
5. Extensive further training and supervision
Working with EDs does not start and stop in the 50 minutes you’re with your client. Keep up with professional learning, understand the longitudinal nature of the disorder and keep discussing and holding yourself accountable in supervision.
This is not meant to be a guide for other professionals. It is not a tested methodology or a ‘How to work with ED’ module. It also doesn’t work if a client presents with an ED after the twelfth appointment!
I have written this because the space between “I won’t work with eating disorders” and “something is better than nothing,” is interesting. It perhaps applies to every time we are pushed out of our comfort zone by the more severe end of mental health. There is learning when we, as practitioners, show our ethical findings and decide to work or not work with a client, presentation, or disorder.
Are eating disorders too risky to work with? It needs to be, like many things, assessed on a case by case basis. Many people with eating disorders are aware that often therapists choose not to work with them. I refuse to blanketly reinforce the idea that someone is beyond help. However, that assessment doesn’t start and stop with the client. We need to constantly assess our own abilities, knowledge, and capacity to hold and support ourselves and our clients.
Therese S. Waterhous, PhD, RDN, CEDRD, https://www.edcatalogue.com/eating-disorder-voice/ 2018
The Lancet Child & Adolescent Health, ISSN: 2352-4642, Vol: 5, Issue: 5, Page: 316-318
NHS Digital: hospital admissions for eating disorders 2019