Research call for voices of experience to forge patient-led recovery model for eating disorders in Victoria, Australia

By Rachel King, PhD candidate, Deakin University

As a clinician working in the field of eating disorders, I’m often struck by how committed, dedicated and passionate many health professionals are to supporting people with eating disorders and their families.

However, I’m also struck by how people with eating disorders are often unjustly excluded from mental health services, or are unable to access the support they need.

The issue is, mental health services aren’t set up in a way that consistently allows passionate clinicians like myself to respond effectively and efficiently to people experiencing this terrible illness. This is gut wrenching stuff considering the stark truth that eating disorders have the highest mortality rate of any mental illness, are one of the most common mental illnesses and result in people experiencing significant physical, psychological and social difficulties.

Positive reform requires person-centered model

However, there is a chance that it’s not all bad news for people currently experiencing an eating disorder; Australia is undergoing nationwide mental health reform.  This reform is led by the Department of Health, on behalf of the Federal Government.  It has the potential for either positive or negative outcomes for people who use mental health services. Positive reform will take us from a model that can only provide support to a small number of the most unwell people, to one that places emphasis on a person-centered approach, early intervention and curbing lifelong disadvantage and disability.

Current system is failing patients

The stakes are incredibly high. Right now we are at a crossroads in Australia for the future treatment of people with eating disorders. I have seen, first hand, how the system can let people experiencing an eating disorder down at the most crucial time. I feel deeply frustrated when I see people being sent home from emergency departments with life threatening medical complications as a result of their eating disorder, or hear that people and their families have been discharged from services part way through treatment, well before they are recovered.

Answer lies in integrated approach to service delivery

I believe there can be a better system, one that doesn’t require people to hit rock bottom before getting any help. I believe the service system can be responsive and tailored to a person’s unique needs. This is why I am undertaking a PhD that will develop an integrated approach to eating disorders service delivery for Victoria.

Lived experience best placed to inform the reform

This research provides opportunity to contribute to and participate in an ongoing discussion that will serve to further educate and inform people about what our services should look like.  Importantly, people who have experienced the service system first hand are exceptionally well placed to advise, through their stories and wisdom, the people who are leading mental health reform.

Research informs reform. The best available research evidence at a point in time directly influences policy development, processes and in turn, service delivery to the people who need support. Therefore, research offers a safe, confidential and powerful way to contribute to service change, and in turn – reform.

Dearth of current evidence

It’s hard to believe, but research on how to structure a service system to effectively treat eating disorders is scarce. Currently, it is almost a guessing game for the Government to try determine what a responsive, high quality and accessible service looks like.

This seems incredible, given the constant stream of new and emerging evidence that is shedding light for clinicians on numerous areas such as eating disorder diagnoses, illness prevalence, efficacy of existing treatment models and the development of new, emerging treatment approaches.

If you have experience, you are an expert!

So what do we need? We need you! If you have experienced an eating disorder, or cared for someone with an eating disorder, you are an expert. Your expertise gained through lived experience may be the missing piece of the puzzle. You can genuinely influence change at an important juncture in the redesign of Australian clinical practice. The downstream benefits of your involvement are tangible and are vitally important; a more effective service model can change (and will save) lives.  We need a model developed from the ground up, a true recovery model that is led by the people who have, or are using it.

Collectively your voices will guide system change

Your involvement in research will help us to better understand, appreciate and figure out what needs to happen next. People who have experienced services, as a carer, or as a person directly receiving support, are an untapped resource of expertise.  Collectively, your voices are the most important and relevant contributors to the conversation about how to improve the system.  It is this potent experience of the illness and accompanying wisdom that needs to guide successful service system change.

Value in story-sharing for all

Often, people who are experiencing an eating disorder are so busy struggling with their own individual battles that they are unable to recognise the valuable insight and wisdom they have accumulated. Regularly during my clinical career, I have witnessed people finding comfort, relief and hope through listening to the stories of others, and coming to the realization that they are not fighting this awful disease alone. This indicates that there is great value in people sharing their individual stories and gaining key insights from others. The key to these breakthroughs and connections lies in creating safe and supportive environments that give people permission, opportunity and courage to speak up. Documenting your perspective to influence and inspire others

As an occupational therapist, I’m fascinated by how a person’s experience shapes their values, beliefs and identity. As a researcher, I want to ensure that everyone’s perspectives are documented in a way that influences and inspires others.

The real benefits you will get from participating in research, such as this one, will depend on what you value, what you believe in, and what you hope for – but one thing is clear; your involvement will help others.

I encourage you to have your say on how mental health services should look in the future.

The next step

If you are a carer, or yourself have recovered from an eating disorder and have  received assessment, treatment and/or support from a public mental health service in Victoria and want to contribute to the development of a new integrated approach to eating disorder service delivery, contact Genevieve Pepin (Ph: 03 5227 8462, Email: genevieve.pepin@deakin.edu.au).

About Rachel

Rachel is an occupational therapist who has experience working in both the UK and Australia. She has worked extensively in mental health and the field of eating disorders. She is currently a Senior Clinician at the Victorian Centre of Excellence in Eating Disorders, a statewide team that provides leadership and support to mental health services through clinical consultation, training, resource and service development.  She is also a Lecturer in Occupational Therapy and a PhD candidate at Deakin University.  Rachel is passionate about transforming service delivery models and ensuring equitable access to care. Her research interest is improving the efficiency and effectiveness of service delivery for people experiencing eating disorders and their families.