Issue 64 | Members' Meeting and Peer Work Guide
About this resource
It is strange to reflect on the 10th anniversary NEDC Members’ Meeting 2020, held only a month ago on February 27-28 in Melbourne, with the knowledge of the drastic changes made to society due to the COVID-19 pandemic. We will be exploring this health emergency and its ramifications for the eating disorders community in our next issue once matters become clearer. At the moment, we are all trying to do our best day by day, staying home, washing hands and looking after one another. At the NEDC we are also curating and posting the latest information on our social media platforms and website.
In this issue we are focusing on the great success and gains made at the Members’ Meeting. We would like to take this opportunity to thank our members for making the Members’ Meeting a memorable and productive event. It was a chance for the national eating disorders community to gather - people with lived experience, their families and carers, clinicians, doctors, dietitians, teachers, social workers and other health professionals – in the spirit of sharing information, knowledge and the hope that together we can help build a better system. We will also cover the Peer Work Guide launch, feature an interview with a Peer Worker and our newest resource for dietitians, the Eating Disorders and the Dietitian Decision-Making Tool.
Building the System of Care
Following months of preparation in the Sydney and Melbourne NEDC offices and across Australia as busy people took time out from work and home to congregate in Melbourne, the NEDC Members’ Meeting kicked off on February 27-28. Fully booked weeks ahead, attendees were keen to take part in what promised to be an event that would bring together evidence, experience and expertise - and it delivered.
NEDC National Director Dr Beth Shelton gave a warm introduction and defined the theme and purpose of the two-day event: Building the System of Care (see video). “Building the system of care matters,” Dr Shelton said, “because there is so much at stake for people experiencing eating disorders.”
Dr Shelton began with a definition of a System of Care and a strong statement of purpose. A System of Care is a response to a person at risk of, or experiencing an eating disorder and their family and supports; and a coordinated network of services and supports that is able to deliver the right treatment at the right time, and respond flexibly to changes in the person’s needs - regardless of the person’s geographic location, age, economic circumstances, or cultural group.
Using an analogy of the "discovery" of the platypus (see slide set) - a creature made of many seemingly unrelated parts that bewildered newcomers to Australia – Dr Shelton suggested that it would be helpful in future system building for the sector to collectively hold a clear image of the whole system of care that is needed in Australia. She presented essential elements of the system of care, and implementation principles, including the need for wrap-around stepped care, evidence-informed and evidence-generating approaches, a skilled workforce, communication to ensure an informed and responsive community, and systems supporting integration, collaboration and on-going development.
NEDC Chair and inaugural Steering Committee member Prof Phillipa Hay celebrated a decade of achievements that have marked the formation of a “truly national collaboration”.
Formed in 2009, by 2010 Eating Disorders: The Way Forward - An Australian National Framework was published, the NEDC website was established, a national workshop took place and a detailed literature review conducted. In 2012 the Mindframe - NEDC media guidelines for Reporting and Portrayal of Eating Disorders was published and NEDC membership reached 300. An Integrated Response to Complexity: National Eating Disorders Framework and Clarity in Complexity: Strategic Communication to Support the Prevention and Early Identification of Eating Disorders were released. Now in 2020, with a membership of 4600, there is a “goldmine of resources and support accessible by a click of the computer,” Prof Hay said. She noted the NEDC was distinctive for its national profile and leadership, high-quality outputs and “making a difference in so many ways”.
A very moving and informative session on Lived Experience and Research Perspectives had the attention of the entire room. Braiden Fitzsimmons, Melissa Keller-Tuberg and Liam Manning spoke with honesty and strength of their experiences, with input from Dr Sarah Maguire of the InsideOut Institute and facilitator Hilary Smith, NEDC National Manager.
- “Get first contact right.”
- “I stopped doing everything I loved.”
- “Socio-economic status should not dictate whether you live or die from an eating disorder.”
These were some of the powerful quotes from Braiden, Melissa and Liam that will stay with attendees.
Dr Sarah Maguire contributed to the discussion from the research perspective, sharing insights and research tracking the pathways of people entering the system of care for eating disorders and how that information can be translated into practice (see slides).
After much discussion, research and hard work, the Peer Work Guide was launched. An important addition to NEDC’s eating disorders resources, it is a valuable seven-part "how-to", covering recruitment, the evidence base and more. The next article will explore this topic further.
On the subject of the Peer Work Guide, the CEO of Eating Disorders Victoria (EDV), Belinda Caldwell, gave her personal and professional perspective on the journey (slides and video), and Lesley Cook discussed the development of the resource, from the evidence base to the core competencies (see slides and video).
The afternoon was turned over to systems builders with what Dr Shelton estimated to be a combined 100 years or so of experience in the ED sector: Assoc Prof Warren Ward (Queensland Eating Disorders Service), Michelle Roberton (Victorian Centre of Excellence in Eating Disorders), Dr Sarah Maguire (InsideOut Institute), Dr Randall Long (South Australia Eating Disorder Service), Kevin Barrow (Butterfly Foundation) and Dr Anthea Fursland (West Australia Eating Disorders Outreach and Consulting Service).
Prof Ward introduced us to “hubs, nubs and wugs”, and Sarah Maguire to the hub-to-hub-and-spoke model, while Michelle Roberton discussed a grassroots approach. Dr Anthea Fursland stressed the need for support and upskilling, Dr Randall Long emphasized the importance of good governance and Kevin Barrow reminded us all of the most common feeling expressed by the people they are supporting: “terrified”.
Working groups discussed what was important to them and system builder “listeners” reported their findings back to the room, including, overwhelmingly, access for all regardless of age, gender, socio-economic demographic, cultural background or LGBTQI identification. The data has been collected and will form the basis of further work by the NEDC.
Day 2 began bright and early with a consultation about a credentialing system for eating disorder treatment, led by ANZAED President Dr Kim Hurst, NEDC Research Lead Dr Angelique Ralph and Hilary Smith. A three-year joint project by NEDC and ANZAED, NEDC leads the current development phase. ANZAED and NEDC will work together to test and establish a proposed system in the coming months and years. The system will credential mental health professionals and dietitians who have shown that they meet standards to treat eating disorders. Busy groups again collaborated on ideas and the data was collected for further evaluation.
Keynotes followed, from clinical psychologist Dr Anthea Fursland on Evidence-based psychotherapy and recovery (see slides and video) and Accredited Practicing Dietitian Shane Jeffrey on Nutrition and Recovery (see slides and video). Dr Fursland flagged the three-legged stool approach - evidence-based practice in eating disorders which incorporates three essential components: research evidence, clinical expertise and patient values, preferences, and characteristics. “Recovery is possible at any age and at any stage," she said. Shane Jeffrey noted the role of the dietitian as an essential part of a multidisciplinary team and clarified the need for nutritional intervention as nutrition, counselling and recommending medical monitoring and therapy.
Very popular and well-attended workshops took place: Telling the Lived Experience Story with Mitch Doyle of the Butterfly Foundation; Applying the RAVES eating model in the recovery journey by Shane Jeffrey; Developing the System of Care from a PHN perspective by the NEDC’s Bronwyn Scott; and Cognitive Behavioural Guided Self Help Training presented by Dr Emma Spiel and Jess Ryan from the Victorian Centre of Excellence in Eating Disorders (CEED).
To finish, ANZAED Past President Dr Gabriella Heruc gave an outline on the new Medicare items in practice, discussing meeting criteria, notes on telehealth services and a look at dietetic and psychological treatment items. It was followed by a lively Q&A session.
Networking wrapped up the event and stretched late into the afternoon as far-flung members relished the chance to catch up in person.
Vox Pop videos were recorded over the two days as we asked attendees about their thoughts on the event and on eating disorders in Australia.
Peer Work Guide launch
Peer Workers are people with lived experience who draw on their knowledge to help others. For some time Peer Work in eating disorders was the subject of much discussion and informal organic growth. The National Eating Disorders Collaboration (NEDC) commissioned the development of a Peer Work Guide, to promote and facilitate the implementation of evidence-based peer work in treatment and support services for people with eating disorders. The resulting Peer Work Guide is a useful new resource that can be accessed by organisations looking to set up or improve existing Peer Work services, as well as Peer Workers and prospective Peer Workers keen to develop skills for the role.
A partner with the NEDC since its inception in 2008, Lesley began the mammoth task by examining the evidence – peer-reviewed and policy literature – and added to the knowledge base with a survey of peer workers, clinicians and people who have received peer support and interviews with peer workers and leaders from selected peer programs in Australia. It is, she says, a “living document” and a resource to be “dipped into”.
Belinda Caldwell, CEO of Eating Disorders Victoria, began working in the Peer Workforce area with CEED, EDFA and F.E.A.S.T after caring for her daughter (see slides and video). Her professional background in health change management helped her gain a voice for change in the system, especially in developing and working with the Peer Workforce, at the Victorian Centre of Excellence in Eating Disorders (CEED), Eating Disorders Families Australia (EDFA) and F.E.A.S.T (Families Empowered and Supporting Treatment for Eating Disorders).
She said dealing with an eating disorder left her family feeling like they had “landed on a different planet” and meeting peers provided normalisation, hope, practical strategies and a map ahead. “Hope is really important,” she said. It was people who “got it” and gave her advice from what to cook to how to cope who laid down the elements of success: inclusiveness and respect, the importance of lived experience and openness to input and creativity.
Peer Workers draw on their lived experience and knowledge of recovery from an eating disorder to help others achieve improved recovery outcomes. Taking a non-clinical collaborative approach, lived experience and self-disclosure are essential, as is formal employment (paid or voluntary) with a contract of employment, and access to training, supervision and employee benefits.
The Peer Work Guide also includes information for services and employers of Peer Workers. Employer concerns include how to start, how to recruit and provide a safe workplace for Peer Workers, with training, supervision and support key practical elements. There is a skill in the ability to apply experience to support. Strong recruitment strategies and selection criteria relevant to safety concerns for peer workers and participants are an essential element of the Guide.
The Guide is about addressing challenges while also harnessing the value of lived experience and supporting people with eating disorders in new ways that can provide a great adjunct to treatment.
The Guide is in seven parts:
Peer work interview
For a first-person view of Peer Work, we interviewed Kathy Logie, Peer Practice Lead at Ruah Community Services (RUAH), Perth, to talk about the day-to-day reality of mentoring and coaching.
When did you become involved in Peer Work?
I became a Lived Experience Facilitator 15 years ago when I was employed by the newly created Body Esteem Program here in Perth. We didn’t know it was called Peer Work then, it was simply a role that required me to have had an eating disorder and I was so excited that there was somewhere I could fit! Prior to that I had been a professional dancer, which fuelled my weight-related obsessions and also left me quite lost overall as time went by.
Did Peer Work have any personal benefits for you?
Peer Work has been pivotal in my life, it has become my career and is something I am extremely proud of. My difficult times mean so much to others who are struggling now. It is incredibly powerful to be an inspiration for people and I feel so privileged that people trust me. Delivering peer support has kept me on a path to recovery because it would be hypocritical for me not to be… I come into contact with amazing resources and teams and they all give me something that I needed to be fully well. Plus I can pay the rent and bills by doing something meaningful, interesting and impactful.
How do you use your story in Peer Work?
Using my story is such an interesting aspect of the work. I have been employed by so many different clinics, programs, organisations and projects that every time I share it will be slightly different. Sometimes all I say is that I had anorexia when I was young and it took such a long time to get over. Other times I speak for an hour about the process; what I think led to my experiences, what helped, what didn’t, what I do now, how it feels to be in my body these days, do I relapse, am I really recovered? My favourite is a Q&A style session with health care workers who are trying to integrate this understanding into their work. I also still love therapeutic groupwork which allows people to explore what their ED means uniquely to them.
Who benefits from Peer Work?
I think most people benefit from Peer Work, it’s a natural human action to empathise and support one another through something that you relate to. I truly believe that people with any form of eating disorder take huge comfort from talking with someone who has been there. Their families do too. I know many parents that were relieved to meet me as then they felt more hope for their child.
I want to mention how under supported binge-eating disorder is. It is something we have largely ignored although when the Body Esteem Program developed a group for people who over-eat, I realised the underlying angst and pain is so similar to AN/BN. ARFID is also something we need to understand more deeply, I think.
What do Peer Workers do? Describe a day in the life.
It’s difficult to capture a day in the life of a Peer Worker because it is so organisation-specific. For example, one role I had was to educate and stigma-bust in public hospitals, another was to develop an adolescent peer program, yet another was training Peer Workers in eating disorder skills, or assisting with recruitment or ‘teaching’ Carer Peers how to facilitate groups, even speaking at conferences and promoting positive body image and recovery in general. Definitely a key component would be a) supporting people who have eating disorders and b) providing debrief for clinical teams that work with people who have eating disorders.
What role in recovery do you think Peer Workers provide?
I think that Peer Workers play a unique role in recovery because we have two perspectives, one is a memory and one is current. I can reflect back to different times and then review ways in which I ‘got free’… Sometimes I imagine it like this: People who are stuck in a dark scary place become used to not seeing anything and do their best to survive in those conditions, thinking there is no other way … but someone comes along with a torch and maybe even a helping hand and suddenly the pathways appear in front of people in ways that they didn’t imagine. I have the torch because I found it myself and now it’s pretty easy to share it with others. I can’t make them walk out of the dark place though, only they can do that. I can encourage them of course and reassure them that it’s good out of the darkness, although weird at first. They will need extra help till they get used to it and become adjusted and regain strength. Then they will probably want to share a torch too!
What would you like to recommend to someone who is interested in engaging in Peer Work?
Given what I just said, I think anyone who wants to become a Peer Worker should start small and carefully. Most of us do it naturally in an informal way… sometimes it works and other times it causes problems. In order to do it regularly as a job you do need to have a real commitment to yourself, to staying well and becoming even more well. To walk the talk no matter what (and if you can’t, to be real about that and get help ASAP). Sometimes our EDs trick us and we have to develop awareness of those traps. Just because we feel better doesn’t mean we want to spend all our time thinking about or talking about EDs. Put yourself first and only do this work if you really feel it is a skill you want to develop. But never sacrifice your recovery for anyone else, it is just too painful. Also, believe in yourself and give yourself a chance, you might be more amazing than you expect!
Last words… From my observations people who develop eating disorders are beyond intelligent, so creative, very kind and quite funny when they are doing ok. They have sensitivity as a superpower but it also their worst enemy; Train the monkey mind by mindfulness and effort, fill yourself with love and validation, nourish yourself with food and nature and positivity and animals …contribute to the world because we need your superpowers.
New decision-support tool for dietitians
Dietitians may be one of the first clinicians that a person with an eating disorder comes into contact with. They play a crucial role in the early identification and initial response to a client who may be at risk of or experiencing an eating disorder.
In light of this, the NEDC and DAA worked collaboratively to develop the Eating Disorders and the Dietitian Decision-Making Tool. The tool provides an in-depth, step-by-step guide using a process flow chart and practice examples. It is designed to support dietitians working in the community or private practice settings in the safe and effective identification of and response to eating disorders including anorexia nervosa, bulimia nervosa, binge-eating disorders, and other specified feeding and eating disorders. The tool also includes useful resources for clients, carers and clinicians.
Many clients who experience eating disorders may present to dietitians with complications or comorbidities associated with their illness (e.g. gastrointestinal complaints), or may seek dietetic services for issues that may mask their illness (e.g. weight loss). There is an increased mortality risk in all eating disorder presentations. Early identification, prompt intervention, and access to person-centred and evidence-based care are required to reduce the severity, duration and impact of the illness. This is necessary to set the client on a path to the best possible recovery outcome.
The Dietitians Association of Australia (DAA) Eating Disorder Role Statement outlines the skills and knowledge required by Accredited Practising Dietitians (APD) to work with clients in the eating disorders area. The Role Statement defines the role of an APD and provides details on the activities that entry level and higher level APDs would conduct.
Dietitians are key professionals in eating disorder multidisciplinary care teams. They play a role in identifying, assessing and engaging clients with the appropriate intervention and treatment. The dietitian’s involvement is critical to care through the provision of structure, education and therapeutic support to encourage adequate nutritional intake and normal eating behaviours.
The tool is designed to be used by entry level and higher level dietitians, including those with little experience working in the area of eating disorders. It supports dietitians in the community and private practice settings.
Stay tuned for our next e-Bulletin, which will look at COVID-19 in depth. NEDC is collating the latest news and updates regarding COVID-19 and eating disorders in one place here: nedc.com.au/news/show/35/covid-19-information.
Stay safe and stay physically distant if you can in the meantime.
Echocardiographic findings in adolescents with anorexia nervosa at beginning of treatment and after weight recovery
Anorexia nervosa (AN) is an eating disorder with somatic complications.Read more
Challenges in conducting a multi-site randomized clinical trial comparing treatments for adolescent anorexia nervosa
OBJECTIVE: To describe obstacles in the implementation of a controlled treatment trial of adolescent anorexia nervosa (AN).Read more
On bells, saliva, and abdominal pain or discomfort: Early aversive visceral conditioning and vulnerability for anorexia nervosa.
Gastrointestinal (GI) symptoms are common in anorexia nervosa (AN), can predate illness onset, complicate renourishment, and persist after recovery.Read more
Strong relationship between vitamin D status and bone mineral density in anorexia nervosa
BACKGROUND: Anorexia nervosa (AN) is associated with impaired bone health and low bone mineral density (BMD) as a consequence of an inadequate peak bone mass in adolescence and bone loss in young adulthood.Read more