Issue 66 | Building the System of Care
About this resource
In this issue of the e-Bulletin, NEDC National Director Dr Beth Shelton reflects on feedback provided by attendees at the Members’ Meeting to provide a snapshot on the current state of the eating disorders sector. Her letter to our members details the progress to be made on building the system of care.
Director of the Queensland Eating Disorders Service (QuEDS) Associate Professor Warren Ward gives us a medical perspective on the system of care and discusses his 15 years of experience in expanding existing eating disorder programs. Eating Disorders Victoria (EDV) CEO Belinda Caldwell provides a lived experience voice and tells us about her journey from being a carer to making a difference in future treatment.
We also report on NEDC’s joint partnership with the Australian Institute of Sport (AIS), which has included the development of resources for athletes, as well as coaches and performance support staff coping with the COVID-19 pandemic.
And we look back on six months of the new Medicare Benefits Schedule (MBS) item numbers by providing links to our resources, tips for GPs and those searching for a GP.
In this edition you’ll find lots of useful links to helpful resources. Our role at the NEDC is to provide free access to this information and help build a better nation-wide, evidence-based system.
Building the System of Care: a letter from NEDC National Director Dr Beth Shelton
Dear NEDC members and other readers,
I hope you are faring well in these challenging times.
As you may know, NEDC is a collaboration of people to help build a consistent and effective system of care for eating disorders in Australia. I am writing this article to let you know what people at the NEDC Members’ Meeting 2020 had to say about what matters most in building the system of care in the next five to ten years. We made a promise to reflect back to the sector what we heard them say, and this article provides a careful account. I will outline how we went about asking the questions, and then give you a snapshot of what these people - who know our system of care from the inside - think about what most needs to change.At the NEDC Members’ Meeting held on February 27-28 in Melbourne, after hearing about the “system of care” and about system building work across the states and territories, people chose to go to one of the following groups: Lived Experience (N=24); Dietitians (N=20); Mental Health Professionals (N=40); Primary Health Care (N=35); Researchers (N=12). You could choose a group because you were from that group or because it was the one you were most interested in.
Firstly, each person was asked to write down their individual responses to two questions:
Thinking of the next five to ten years:
Question One: What changes to the system of care are most important to you?
Question Two: What changes will be most important to build the system of care?
Next, in groups of eight, all ideas were shared and recorded. Then each person identified the three ideas that “are most important to you. It doesn’t matter whether they were yours to begin with or not.”
The five groups reported back to the meeting and all written data was analysed. Here is what emerged:
For dietitians, the three most highly endorsed priorities for changing the system of care were:
1. Improving the functioning of the multidisciplinary treatment team in out-patient care
2. Credentialing for dietitians providing eating disorder treatment
3. Public health messaging aimed at improving people’s relationship with food and body.
When all dietitian group priorities are analysed, the following also emerge as important concerns for dietitians:
- clarifying and strengthening the role of dietitians as treatment providers
- increased opportunities for training and supervision.
Lived Experience +
In this group of people with lived experience of an eating disorder, families/supports and others, the three most highly endorsed priorities for changing the system of care were:
- Better trained GPs and others at points of first contact
- Lived experience a valued voice in all forums and faces of mental health services
- Better pathways/support between in-patient and out-patient treatment.
When all lived experience group priorities are analysed, the following also emerge as important concerns for people with lived experience:
- the urgency of eating disorder treatment in saving lives
- improving the experience of people using treatment services
- a skilled, integrated, valued peer network.
Mental Health Professionals +
For mental health professionals, the three most highly endorsed priorities for changing the system of care were:
- Better trained GPs across first contact, referral and medical monitoring
- Seamless integration between different levels of care with clear processes and access
- More funding for EDs.
When all mental health group priorities are analysed, the following also emerge as important concerns for mental health professionals:
- better equipped workforce including basic ED training in undergraduate courses, training for hospital staff and management, training in work with people across the weight spectrum, and in working with co-occurring conditions
- improving the experience of people using treatment services through a person-centred, strengths-based approach
- equity of access to treatment
- planning which includes both public and private services.
Primary Care Group +
For this group of people from Primary Health Networks, and people involved/interested in primary care, the three most highly endorsed priorities for changing the system of care were:
1. Eating Disorders seen as core business within the existing care system; we are all responsible
2. Seamless transitions into and out of primary care in a stepped care system
3. All geographic areas have access to integrated effective care and a skilled, credentialed workforce.
When all primary care group priorities are analysed, the following also emerge as important concerns for primary health:
- area access to ED treatment services
- flexible funding models
- importance of early intervention.
Research Group +
For this group of researchers and people interested in research, the three most highly endorsed priorities for changing the system of care were:
1. No “wrong door” approach
2. Strong evaluation of treatment models
3. More state and territory collaboration.
When all primary care group listed priorities are analysed, the following also emerge as important concerns for researchers:
- improved experience of care and moving through the system.
Many thanks to you if you were one of the people at the NEDC Members’ Meeting who generated these insights. What might we, as a field, take away? This group, as a whole, generated some clear themes that give us hints about where to direct our efforts as a field.
There is a lot of work to do with “first responders” to eating disorders. We need to provide information and training to professionals who engage with a person with an eating disorder early on. This certainly includes GPs and also other primary care professionals and Emergency Department workers. Eating Disorders are core business for primary health care and early intervention is key.
Seamless Stepped Care
We need to address difficulties navigating the system, and system fragmentation, by working towards a coordinated stepped care system. This begins with “no wrong door” when people are seeking care options. The care system involves both public and private services, and planning needs to reflect that. Examples of problems at present include transitions between in-patient and out-patient treatment, between youth and adult treatment, and access to treatment in rural and regional areas.
While we talk about “the multidisciplinary team” there is a lack of training and leadership to support the configuration of the team and its optimal functioning. There is a need for increased role clarity, including clinical and administrative leadership, and consideration of Medicare items for conferencing.
Equipping the Workforce
Adequate training and consultation for professionals is a source of concern across the field. All groups considered that basic eating disorder training should be part of undergraduate health courses. Credentialing of treatment providers was supported as one strategy to help ensure an effective workforce. Training for hospital workers and managers, training in working across the weight spectrum, and training in managing complexity are among areas flagged.
Public health messaging and community prevention strategies are a crucial part of the work of this field. We need to communicate key messages about food, eating and bodies beyond our field, into schools and communities.
We have further to go in involving the expertise and diversity of lived experience. Lived experience voices need to inform all levels of mental health service provision. Strong peer networks including peer work leaders are a key part of the developing field.
There are multiple solutions to all the challenges articulated here. NEDC looks forward to helping lead solutions and build the system of care into the future.
Very best, Beth
“We’ve got a long way to go but we’ve come a long way,” Associate Professor Warren Ward told the NEDC’s Members’ Meeting attendees earlier this year.
We spoke to the Director of the Queensland Eating Disorders Service (QuEDS) and asked him to expand on those thoughts in a wide-ranging discussion about building the system of care.
The QuEDS model
A psychiatrist who has been working in the eating disorder field since 2001, A/Prof. Ward’s work was originally in Posttraumatic Stress Disorder (PTSD), which he found useful later as many eating disorder patients have a history of trauma.
Interested in leadership and taking part in further training in management, he believes people who choose to work in the eating disorders sector are “passionate, devoted and dedicated”, giving “150%” to their work.
“How can I as a leader help my team to do their best?” he said. “So many things in systems (are) getting in the way of good work.”
Driven by the hope that “if it was my daughter or son” they would receive similar treatment from the community and the medical world as if they had epilepsy or diabetes, A/Prof. Ward and his team have built on the system in Queensland to enable clinicians to be more “confident and competent” in treating eating disorders.
Fifteen years ago, QuEDS was called EDOS and had two staff members, Elaine Painter and Karen Clifford, to whom A/Prof. Ward gives great credit. At that time, he said it was difficult to convince hospital wards to admit eating disorder patients, who were deemed either “not sick enough” or “too sick” and there was a long waiting list for specialist beds.
The solution was a multi-pronged approach with the cooperation of medical and mental health authorities to open up every bed. A/Prof. Ward says it is the achievement he is most proud of: “Every bed is open for business for people with ED for acute treatment.”
There is now a statewide consultation service, where general medical and mental health wards and their clinicians are supported in managing patients by QuEDS. The approach is in three steps:
- Promise of a specialist bed if the patient doesn’t progress with regular QuEDs support of general team
- Customer-focused consultation service
- Intensive training opportunities for general clinicians
“Building capacity through customer-friendly consultation services to clinicians and intensive training has been a hallmark of what we do,” he said.
There are now statewide guidelines for admission and inpatient treatment to medical and mental health wards endorsed by every director of mental health in Queensland, every director of medicine and emergency medicine and GP QLD.
QuEDS has been consulted by colleagues in other states such as NSW, WA and Tasmania about how they can establish similar models.
Training future mentors
Another improvement has been introducing training positions for three psychiatry registrars every year. Over 15 years, that means 45 psychiatry registrars have received 6-12 months intensive training on the assessment and treatment of eating disorders.
With the QuEDS team growing from two to 20 over that time, there has also been a multi-disciplinary approach with dietitians, nursing staff, occupational therapists, social workers, medical staff and consumers and carers all playing a role in coordinating and implementing pathways and in peer supervision and forming state guidelines. The QuEDS team trains a broad range pf clinicians including emergency department doctors, GPs, community mental health clinicians, psychiatrists, physicians, dietitians and nursing staff in medical wards.
“We train 4000 clinicians a year,” said A/Prof. Ward, who believes that by training allies and mentors each discipline has someone to go to as a champion.
A/Prof. Ward and his team would like to “make eating disorders everybody’s business”.
“In all health clinician groups there is very inadequate training. At both the undergrad and post grad level many feel ill-equipped,” he said.
People seeking help could end up anywhere – emergency department, GP, dietitian, psychiatrist, psychologist and/or public mental health service.
“Ninety per cent of every profession don’t know how to treat them,” he said. “Everybody needs to have some knowledge. They need to know at least who to call.”
Lived Experience voice
Having people with lived experience participating in training delivery is vital, according to A/Prof. Ward.
“Doctors and other clinicians find that lived experience enlightening,” he said.
Lived experience has also been an important component of planning, and input from that community has led to greater coordination of care.
Fifteen years ago the treatment pattern was long admissions without any clear goals, no coordination of care from the team and many nurses were burnt out. A/Prof. Ward ran a planning day for the entire eating disorders specialist ward staff, and invited a carer and a recovered person to talk to the team, which energised the nursing staff who do 90% of the care, he said. This event was repeated for 10 years.
An initiative by EDQ under Ali Lee developed peer mentors and led to a trained and supervised speaker program.
“It’s been really powerful for me in delivering training. We could use more. (But) there needs to be an infrastructure of support for that career path.”
Role of evidence
Being evidence based and evidence generating is also crucial.
“It’s been a happy journey for me because things have improved,” he said. “When I began 15 years ago there was no evidence-based treatment for adults with anorexia.”
Thanks to our “wonderful researcher colleagues”, he said there are now three – CBTE, SSCM and MANTRA.
A/Prof. Ward also believes the interface between research and clinician service delivery is important and says the sector is indebted to the work of researchers such as Professors Touyz and Hay, who established the Journal of Eating Disorders several years ago.
However research discoveries and new treatment theories can’t be delivered in practice if someone is medically unstable and very malnourished, so the team promotes the medical, nutritional and psychological triad in training: 1) keep the patient alive through medical management; 2) enough nourishment to the brain so the person can benefit from therapy; 3) therapy.
Evidence is also helpful in ending stigma. A/Prof Ward’s key messages to general clinicians that he trains are that eating disorders are common, deadly, easily caught but treatable illnesses.
Hubs, nubs and WUGS
Even though the QuEDS model opens up beds throughout the state, in Queensland there are only five publicly funded hospital beds for adults with eating disorders, an eight-week assessment list and up to six-month wait for a bed.
“That breaks my heart, to be honest,” he said.
To address the issue of increasing capacity QuEDS has introduced “hubs” over the past four years, rolling out “mini-QuEDS” on the Gold Coast, Sunshine Coast and in Cairns.
With a team comprising .3 psychiatrist, .5 dietitian, a full-time CNC senior nurse and two therapists, the four deliverables are to provide:
- evidence-based treatment
- a consultation service
- a workforce development plan (training clinicians)
- clearly identified patient pathways
“People have somewhere to go and clinicians have support,” he said, adding that the model might be “transferable across Australia as a way of improving the access to treatment and clinicians everywhere”.
Hubs have led to “nubs”, a term A/Prof. Ward coined to describe cost-neutral ways of reorganizing existing inpatient medical services that have sprung up throughout Queensland. With QuEDS consulting, they were first set up at Royal Brisbane & Women’s Hospital, when physician Dr Caroline Summers wanted to coordinate better care for eating disorder patients.
In addition to hubs and nubs, “WUGs”, or work unit groups, enable stakeholders to locally apply guidelines. The groups include a physician, consultation-liaison psychiatry staff, dietitian, senior nurse and QuEDS and emergency department representatives. Operational implementation includes a weekly “bed parliament”, a stand-up meeting with a 30-minute discussion about patients where the groups plan discharges, follow up cases and go back to the patient and family with clear, consistent messaging about their treatment trajectory. Refined after a few years with a written handout for patients and carers, similar models have been adapted by Princess Alexandra Hospital (PAH), Logan and Sunshine Coast hospitals.
A/Prof. Ward took part in the 1990s National Mental Health Strategy, which revolutionized mental health care in Australia over a period of 10 years, by training GPs as part of an Australia-wide program of change. What can we learn from that process for a national eating disorders strategy?
For the Mental Health Strategy, A/Prof. Ward said every state health minister and federal health minister came together with clinicians, consumers and carers to implement a new approach designed to destigmatise and improve access. Developing new strategies, training, integration, monitoring, reporting, increased visibility and accountability to standards were important elements in building a new mental health system.
A/Prof. Ward recommended people working in the eating disorders sector make connections and share solutions.
“Get some fellowship around you - NEDC provides that, as do ANZAED and other professional organisations. If you get together with other people having the same challenges, it’s very validating.”
Sharing inspiring stories are also important.
“Stories are very powerful. Especially if they’ve got a good ending.”
Structures for Support: Belinda Caldwell
“You feel like you’ve landed on a different planet,” Eating Disorders Victoria (EDV) CEO Belinda Caldwell told the NEDC Members’ Meeting of her introduction to the world of eating disorders while launching the NEDC Peer Work Guide earlier this year. Navigating around that new world and building the system of care has been an interest for Ms Caldwell even before she became formally involved in the eating disorders sector.
Previously a nurse who had worked in several roles including as CEO of APNA (the Australian Primary Health Care Nurses Association), she stepped down to care for her daughter after she became unwell with anorexia nervosa in 2011.
Following her experience, Ms Caldwell began volunteering for organisations including Families Empowered And Supporting Treatment for Eating Disorders (F.E.A.S.T), where she helped set up the At Home with Eating Disorders carer conferences in collaboration with the Butterfly Foundation, and took up an opportunity to work at the Victorian Centre of Excellence in Eating Disorders (CEED) as Carer Consultant and project manager.
Very early in, she went to Canberra for an NEDC Members’ Meeting to see the lay of the land, already thinking along the lines of combining professional and personal experiences, and also attended ICED and ANZAED conferences.
As a concerned parent, she was initially “very freaked out”.
“It was an area of health I had no experience with,” she said. “But at the same time there was a little voice in the back of my head going, ‘OK, what is it about this system, what is it about this care that I’m getting, the support I’m getting, that could be tinkered or changed to make a difference in the future?”
Value of Lived Experience
Ms Caldwell believes lived experience is of crucial value to a national treatment model.
“If you’re building a system of care you have to understand the system from the point of view of the people that are going to be walking through it,” she said. “Always bring it back to the person needing help. What are they looking for? What’s going to make sense to them at that point?
“You want a system that makes sense to the user.”
Her experience of being in the room with clinicians and around the table across a range of advisory groups has led to a wish to make it “real and raw”.
“(It’s about) prompting those discussions where we build the system around the people that use it rather than try to wedge the people that use it into the system.”
She adds that peer support is also crucial in “normalizing” the experience and offering hope and practical advice.
“Once you can normalize it for people they get less paralysed by what they’ve seen,” she said. “Hope is the other part of it.”
While the peer workforce is still emerging, creating structure and providing support are necessary at every stage.
“At EDV we do a strong peer support program with people with an ED,” Ms Caldwell said. “Being a structured program, it really is about training and support of the peer mentors.
“It’s predictable. We monitor the program closely, both the mentees and mentors. We monitor their eating disorder symptomology, we’re wanting to see the program is safe for both the mentees and people who are mentoring.
“Overwhelmingly we have found there has only been improvement for the mentors as well as the mentees.”
While a lot of peer work currently is informal, she said working as part of a team is vital.
“I think peer support is best when it’s bought in as part of a whole-team approach,” she said. “As part of a team you get the opportunity for debriefing, to process what you’re seeing and discuss it.”
Strengthening the model
With few services available in Australia except for programs by EDV, EDQ and WA’s Body Esteem Project, how could Peer Work become part of a system of care?
“It’s do-able,” Ms Caldwell said. “The programs already exist. People can learn from the programs. It’s not like anyone has to set up something completely new. I know we’d be willing to share any of our resources with other states.”
For peer work to become part of the national context, there are a few issues that need development.
“At the moment in terms of the peer workforce generally there’s a distinct lack of clarity around roles, role descriptions, training, pay scales,” she said.
“If we really want to grow this workforce … there needs to be a place in the system for them.
“I don’t think we can have a system where peer support is not part of the system, where it sits outside. It needs to be embedded into the system. It needs to be an expected part of the treatment pathway.”
Ms Caldwell said access to targeted peer support should be one of the first questions on a treatment “checklist”, and can include support groups and online approaches, which can have a greater reach into a wider area.
“Online access is increasingly important and very acceptable,” she said, particularly since the outbreak of the COVID-19 pandemic.
“When you define the system of care and draw it up, peer support (should be) right in there. It should be an expectation when someone enters into our service system that one of the options offered should be peer support.
“Our peer support program has been shown to reduce hospital admissions by 75%,” she said.
“We know this works. We see it every day.”
NEDC has created the Peer Work Guide, a six-part resource which gives practical suggestions for peer workers as well as those looking to set up peer work services.
COVID-19 reboot for athletes: AIS partnership
The NEDC has been working in partnership with the Australian Institute of Sport (AIS) for over two years to help the high performance sport system support the prevention and early identification of disordered eating, and promote timely intervention.
Recently, the two organisations have turned their attention to the COVID-19 pandemic, and how the experience of physical distancing, event cancellation, loss of income and eventual return to sport, or “reboot”, may affect the body image and eating behaviours of athletes. New resources have been developed for athletes, coaches and performance support staff within sporting organisations, with tips on what to look out for and what to do if food and body concerns become an issue.
Publicly available versions of these documents can be found on the NEDC website, with relevant referral details for athletes and coaches involved in community and sub-elite sports. Athletes, coaches and health professionals in the high performance sport system can refer to the AIS website for details specific to their organisational context.
An important plank of building the system of care is ensuring treatment is more accessible to all. It's been more than six months since the Medicare Benefits Schedule new eating disorder items were introduced on 1 November 2019. The NEDC has collated Eating Disorder Treatment Plans (EDP) templates, questionnaires, referral guides, fact sheets and FAQs on our website which are regularly updated and also includes temporary item numbers introduced as part of the COVID-19 response.
Pathways for patients
GPs can refer eligible patients (see criteria) for up to 40 psychological and 20 dietetic services under an Eating Disorder Plan. For patients with eating disorders who do not meet the criteria, the treatment pathway is to use the Better Access to Mental Health Plan for up to 10 psychological services, and the Chronic Disease Management Plan for up to five dietetic services.
Treatment can also be provided to a patient without an EDP, as long as an MHP and/or CDM Plan is in place – the right plan is needed for the right service type (i.e. psychological or dietetic).
Guides for GPs
If GPs need more information about how and when to use the EDP, our handy cheat sheet may help.
This two-page document from the InsideOut Institute could also be helpful for a GP in carrying out a medical assessment.
Guides for people seeking treatment
The first move in getting an Eating Disorder Plan (EDP) is seeing a GP.
The Neuropeptide Hormone Oxytocin in Eating Disorders.
PURPOSE OF REVIEW: The neurohormone oxytocin (OXT) impacts food intake as well as cognitive, emotional, and social functioning-all of which are central to eating disorder (ED) pathology across the weight spectrum.Read more
Intimate stimuli result in fronto-parietal activation changes in anorexia nervosa.
BACKGROUND: Intimacy is a key psychological problem in anorexia nervosa (AN).Read more
Clinical characteristics associated with premature termination from outpatient psychotherapy for anorexia nervosa
Aim: The literature on clinical characteristics associated with premature termination of treatment (PTT) is beset with conflicting and non-replicated findings.Read more
The effect of gonadal and adrenal steroid therapy on skeletal health in adolescents and young women with anorexia nervosa
Anorexia nervosa (AN) is characterized by subnormal estrogen and dehydroepiandrosterone (DHEA) levels.Read more