Validation that eating disorders are a SERIOUS illness
by June Alexander
Christmas has arrived early for the estimated one million Australians living with an eating disorder. For the first time access is being provided to a comprehensive treatment plan under Medicare. Patients with severe eating disorders will be able to access up to 40 psychological services and 20 dietetic services each year, under Medicare, from November next year.* This is the best Christmas present ever. Implications for Australians are enormous. As someone who developed severe and enduring anorexia nervosa as a child in 1962, and whose illness has severely impacted on and shaped my life, I give thanks to the many people who have advocated for recognition of eating disorders as a truly serious illness.
An actual illness
Children today and tomorrow who develop an eating disorder will be able to access the services they deserve and need. Adults will be able to access the services they deserve and need, knowing they have an actual illness, not some figment of their imagination that screams they are weak and hopeless.
The momentum for recognizing the truth about eating disorders is heartening. Twice in one week, eating disorders have been national news items. Besides the Medicare announcement, our Federal Opposition leader, Mr Bill Shorten, described eating disorders as a national crisis, stating the statistics around eating disorders don’t lie, and calling on Parliament to work together to act on eating disorders.
This is amazing progress. My heart is singing. Eating disorders are being forced into the open, where they need to be. We need to continue the work of dismantling the shame, stigma and secrecy that has accompanied eating disorders for far too long.
We must strive to connect with and support people of all ages who are experiencing eating disorder symptoms today, and we must do our best to ensure that our children who indicate signs or symptoms of an eating disorder receive prompt intervention with evidence-based treatment.
The importance of family
While our government can help a lot in combating eating disorders, and our treatment teams can save lives, the support given to and provided by families is an equally crucial element for recovery, because an eating disorder affects every member of the family.
Love for my children, and the love and support of their father, inspired me to cling to hope and persist in healing from my eating disorder. Today, love for my grandchildren inspires me to persist in advocating for early intervention and helping others to heal from their eating disorders.
Most often, however, the prime responsibility of caregiving falls to the parents. The task is challenging in the extreme. Here, some Australian parents who have cared, and are caring, for their child during recovery from an eating disorder, share what the Medicare announcement means to them:
Dr Marcia Smart, MBBS FRACGP
I almost lost my most precious one in my life. I experienced sitting in a GP’s rooms with my precious family member as the GP misdiagnosed the symptoms and dramatic weight loss as “within acceptable limits.”
Thankfully I trusted my instincts and sought a second opinion and got the correct diagnosis from a second GP and got the specialist care needed for complete recovery after a six-year journey through the hell that is physical and psychological recovery from anorexia nervosa. As a GP myself I was horrified by the journey and the setbacks. I realized how little I’d been taught in my medical course and GP training about eating disorders. I realized I needed to learn so, so much, both as a parent and as a GP. Such knowledge was crucial for patients to be diagnosed early and referred to specialist dietitians, Family Based Therapy clinicians and psychiatrists trained and with the experience to untangle the complexities and subtleties of this deadly illness.
Eating disorders don’t discriminate, affecting all ages from nine to 72, and patients who present with eating disorders rarely volunteer that this is the illness they have. The symptoms will masquerade as anxiety never getting better, gastritis, low energy, iron deficiency, and it takes awareness on the part of the GP to step back and consider “what is truly the cause here?”
This is where the extra 60 sessions of funded visits can help to save lives. Saves families. Save parents and loved ones from losing connection with their loved ones. The support I have received and continue to receive from those with lived experience of eating disorders is crucial. Extra support for families is vital because the entire family unit lives with the eating disorder and recovers with the loved one. Nothing takes more grit and determination to endure and get beyond.
Christine Naismith, Founding board member of Eating Disorders Families Australia (EDFA)
As the news came through of the Government’s decision to create specific Medicare item numbers for eating disorders and raise the number of psychology visits from 10 annually to 40 plus 20 dietitian appointments, my heart sang and tears of joy and relief rolled down my cheeks. The announcement means that:
- eating disorders are being recognized as a major crisis in our country and acknowledged as serious mental illnesses which can have life-long or deadly consequences if not dealt with early and effectively.
- thousands of people who have suffered with eating disorders in the past and present have had their illness validated.
- families will have the chance to have regular, ongoing psychological and dietitian support for their unwell loved one, which is more affordable and hopefully more effective than just attending when things are really bad or when finances allow.
As a mother of two daughters who have had Anorexia Nervosa and ARFID, I know the huge emotional, mental, physical and financial strain that eating disorders can put on the family as a whole. Every member is impacted, not just the person with the illness. While overjoyed that our voices have been heard, there is a long way to go. I want to see recognition of the need to provide welfare for the carer’s well-being through this long and arduous journey, and acceptance among clinicians that parents and carers should in most cases be included in the treatment plans. Parents are most invested in seeing their loved one reach recovery and usually know their family member best of all.
Violeta Bozinovski, Founding director and board member of EDFA, parent support group leader
This news means so much to my family as it signals a huge step in accepting that eating disorders are a serious illnesses that need to have shame, stigma and secrecy removed so that they can be successfully treated with early and targeted intervention.
The toll on my whole family (and many others I know) – mentally, physically and financially – has been enormous. The availability of 60 Medicare funded visits per year is a miracle that cannot come soon enough for Australians affected by the trauma of eating disorders. It is a huge step that will hopefully:
- provide impetus to effectively educate GPs and other clinicians in early diagnosis and the latest treatment so that there is a greater chance of recovery
- vindicate all us “crazy” parents who have battled for months and sometimes years to convince clinicians there was something wrong with their child and who only received care when their loved one is on death’s door
- help recognize that families and carers are a vital member of the care team and play a pivotal role in the recovery process
- give voice to families and carers and ensure their effective involvement in treatment programs
- enable peer support for the person with the eating disorder
- enable clinical and peer support for the families and carers who are in the trenches 24/7 against the war with an eating disorder
Even though I begged and was adamant that my child was very sick, doctors and dietitians refused to diagnose her for six months. Three very expensive visits per week to various ‘ED’ specialists for the six months failed to get my daughter the right help that would have circumvented her sinking deeper into the illness and end up with compromised vital organs in hospital. The PTSD and financial costs have been tremendous with her siblings and us needing ongoing counselling. We have lived via credit as the costs for clinicians and travel are so high.
The hell we have gone through to get our daughter to recovery is difficult for people who do not have lived experience to understand. We have had aggressive, abusive and dangerous behavior requiring police intervention – due to the difficulty in finding adequate clinical understanding and support for our child and the family. By this I mean my child was left in ‘purgatory’ by clinicians who said she was weight restored once her period returned. Little did they or we know that this was only just the beginning. If not for other families sharing knowledge we would not have been successful in getting her to where she is now.
I am thankful that we have been heard. Eating Disorders are frightening, crippling, lonely and traumatic for sufferers and their families. For six years our family has been by our teenage daughter’s side, battling anorexia nervosa. Every day is a battle in my daughter’s mind and I am overwhelmed by the strength that she manages to find to fight her demons on a daily basis. We want our sensitive, funny, caring, loving girl to be well and free from the constant distress that she lives with. She deserves this.
Psychology sessions are crucial to her recovery and the additional Medicare funding gives hope that recovery is possible for everyone. Too many Australian families cannot afford the necessary ongoing expense of psychology and dietetics and are left struggling on their own.
We can’t stop here. We need to talk about this deadly mental illness, share our experience with others to take away the unnecessary shame it brings and the secrecy in which these disorders thrive. We need more funding for research into how eating disorders can be prevented and a national strategic plan in place for early diagnosis and a quicker recovery.
Don Irvine, Founding board member of EDFA
The increase in Medicare Benefits will make a huge difference for future families so that they don’t experience running out of treatment just as treatment is starting to work – this was my family’s experience and the illness reasserted itself and became reinforced. Simply having more sessions is part of the solution; the other part is skilled trained clinicians providing treatment that delivers recovery to all.
*Comprehensive treatment plan under Medicare – what it means
Australians with severe eating disorders for the first time will have access to a comprehensive treatment plan under Medicare.
“It is $110 million investment but above all else it is about providing the services for each person when they need it, where they need it for the first time on any scale such as this,” Federal Health Minister Greg Hunt said.
Patients will be able to access up to 40 psychological services and 20 dietetic services each year, under Medicare, from November 2019.
“It is not only the largest single step forward for eating disorders, it is the first time there has ever been a dedicated eating disorders item or set of treatment services available under Medicare,” Mr Hunt said.
The program will be introduced no matter who is in government because it is a Medicare item. The government announcement acknowledges that eating disorders have one of the highest mortality rates of any psychiatric illness, with anorexia by far the deadliest mental health condition in Australia.
This $110.7 million investment into Medicare is expected to benefit around 30,000 people each year living with eating disorders, helping them to get better and stay out of hospital.
Helplines and links
Australians needing support with eating disorders or body image issues is encouraged to contact Butterfly’s National Helpline on 1800 ED HOPE (33 4673). For urgent support, call Lifeline on 13 11 14.
Eating Disorders Family Australia: www.edfa.org.au
F.E.A.S.T. (The global support and education community of and for parents of those with eating disorders): https://www.feast-ed.org
I have written nine books about eating disorders since my recovery (my “reconnection with true self”) from anorexia nervosa and other long term mental health challenges in 2006. In 2017, I graduated as a Doctor of Philosophy (Creative Writing). My contribution to the eating disorder field was recognised at the 2016 Academy for Eating Disorders International Conference in San Francisco where I was awarded the Meehan/Hartley Award for Public Service and Advocacy. I am currently a co-chair of the NEDC Steering Committee Evidence of Experience Group, a foundation steering committee member of the annual World Eating Disorders Action Day, and an Advisory Panel member for F.E.A.S.T.