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Eating Disorders Families Australia

ABN: 82 613 590 588
Health Education Community development Human services
Brisbane City Council, Queensland
Annual Budget
Number of paid staff
1 - 3
Number of volunteers
6 - 20

Eating Disorders Families Australia (EDFA) was founded in 2016 by a passionate group of volunteer parents and carers who have cared for, and are caring for, young people with eating disorders.

We believe in the power of Lived Experience and sharing our knowledge with others to reduce the time and suffering the whole family endures.

We are all volunteers and work 7 days per week with peak support times from 7pm to 12am. Weekends are amongst the busiest of times for us.

The shared experiences of caring for a child desperately in need of treatment and care, while navigating a complex system, was the catalyst for EDFA.

An eating disorder diagnosis in the family is terrifying and impacts the mental and physical health of everyone in the household. It has a steep learning curve, with constant feelings of fear, worry and exhaustion, while trying to remain compassionate and calm towards a child or loved one with an eating disorder.

The fear comes from the fact that eating disorders are serious mental illnesses , with Anorexia Nervosa being the deadliest of all mental illnesses. It has the highest rate of suicide of all mental illnesses with 1 in 5 dying from suicide or organ failure.

There are over 1,000,000 Australians suffering from various eating disorders which, in an average family of 4 members, translates to over 4,000,000 people impacted.

EDFA was created by families and carers for families and carers… and we are committed to supporting them to be the most informed and effective carers for their loved one.

We are proud to be a collective voice on a national platform. We know that parents and carers have a pivotal role to play in the treatment plan and must be respected for their opinions when decisions are being made about eating disorder treatments.

We understand eating disorders. As expert parents and carers there’s not much we haven’t seen or experienced first hand. We ‘get it’ because we lived it, we survived it, or are surviving it. Anorexia, Bulimia, Binge Eating Disorder, ARFID, OSFED and more.

And collectively, we have a strong desire to help other parents on their own journey to recovery. Because recovery is possible… but it’s not linear and there is much to consider and understand.

An eating disorder diagnosis impacts every member of the family. And while it may be obvious that parents and carers carry the load, it is important to recognise how siblings are affected.

Their mental health and wellbeing can be compromised by the worry about their brother or sister, so it’s important that siblings are supported as well.

Having an eating disorder can lead to many lengthy complications if not treated effectively, including both mental and physical ailments. In extreme cases, eating disorders can even be fatal. Finding an effective treatment program is essential for parents and carers of people with eating disorders.

Daily Online, Phone, Face-to-Face Support:
EDFA volunteers, including the founders and directors, are involved hands-on with families. Providing 7 days per week support to families whilst still juggling their own sick loved ones and the rest of their family and career responsibilities. This support is essential for families to get through their days, and nights. EDFA is the only organisation that provides support 7 days per week.

We have Support Groups in every state:
Learning and hearing from others who ‘get it’ and can provide helpful practical advice is key to being able to support our family members effectively.

We ‘get it’… because we are all experienced parents and carers with real, authentic, lived eating disorder carer experience. We know how isolating it can be, and we are committed to providing increased opportunities for people to connect in face to face settings and online.

strive Carer Support Groups:
- Provide a safe, supportive place for carers to meet each month in a semi-structured environment which allows for both knowledge sharing and peer support
- Provide information and resources to assist parents and carers to understand eating disorders and their integral role in recovery
- Encourage empowerment of carers in their role in the recovery of the person with the eating disorder are run by our trained volunteer carers, for carers.

Eating Disorder Education:
EDFA runs bi-monthly national education and information seminars online, with each seminar hosted by a different lived experience and clinical expert in the Eating Disorder field.

We run these eating disorder education seminars so we are able to up-skill parents and carers… providing resources and information on evidence based, emerging and adjunctive therapies.

Experience has shown us that this help people to be more effective, informed and compassionate carers.

Since COVID-19:

  • We moved quickly to expand all our services online and now reach families all over Australia, including regional, rural and remote areas
  • We now run groups in every state and territory
  • We work 7 days per week
  • Eating Disorder new cases and relapses have hugely increased along with the requests for support
  • Our membership has more than doubled and the amount of support and education we provide 'face-to-face' (online) for families has tripled - from 2 hours per month to 6 hours per month - all volunteer facilitated

The purpose and some points of differentiation of EDFA compared to other eating disorders organisations includes the following:
• EDFA exists because of an ongoing gap in Carer support and advocacy in our health system.
• We have the strongest Carer membership network in Australia, providing daily support, 7 days a week, via the caring communities we have created in our private state-wide strive Facebook groups, phone and face to face. 7pm to 12am being our peak times for support
• EDFA is the only not for profit organisation solely dedicated to eating disorder Carer and family support in Australia.
• EDFA is an essential service for support, information and carer wellbeing for families supporting someone with an eating disorder.
• Research shows that lived- experience is paramount in Carer support services.
• EDFA was created by Carers for Carers. Our lived- experience of caring for a loved one with a life-threatening eating disorder and facing the many difficulties navigating an often inadequately informed or prepared health system, allows us to share our knowledge and experience to help others.
• EDFA supports families in their distress and helps them work through the challenges they face trying to get their child to eat, keeping them safe, navigating the health or mental health system and learning to be more confident, compassionate and competent Carers. This means they can better manage their loved one at home and do not require such frequent hospitalisation stays, thus reducing the burden on our already overstretched hospital system.
• We are receiving ever-increasing member and support requests.
• We play a huge role in bridging the gap between hospital and the community – i.e. we are the community.
• We are in the preventative space as well as the support space.

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