Press Conference - Butterfly Foundation
9 December 2018
CHRISTINE MORGAN, CEO BUTTERFLY FOUNDATION: I would define as probably the most momentous day for eating disorders.
I begin by acknowledging the Traditional Owners of the lands on which we stand – the Cammeraygal People – and pay our respects to their Elders, past, present and future. Butterfly’s board members, represented today by Professor Susan Paxton and Catherine Happ, and I welcome our distinguished guests: our Prime Minister, Scott Morrison; Minister for Health, Greg Hunt; Doctor Sarah Maguire; Doctor Teresa Anderson, who is the CEO of the Sydney LHD and – sorry, Sarah is the Director of InsideOut Institute; Jana Pittman, ambassador for InsideOut; Lucy Brogden, who is the Chair of the National Mental Health Commission; Trent Zimmerman and Andrew Wallace; and those of you who have walked this journey with us.
I acknowledge each person with us today who has a lived experience of an eating disorder. Fiona and Judy; we remember in particular, Tess and Alana, and we have the reality of Tess with us today. We lost them to these terrible illnesses, but their beauty and their passion for every aspect of life has embedded in us an absolute commitment to fight. Bronny, Maddie, Jana, Fiona, Cath, Kelly – we think of those who are still fighting and those who have recovered. And we just know that we can’t give up at any point in time. Recover is possible and it’s the right of anyone with an eating disorder to recover, however torturous the journey. Paul and Mary, we hold onto memories of dark days and dark nights that drove us to look overseas for a new way of treatment, and which inspired us to push the frontiers here in Australia.
Before I invite our Prime Minister to speak, I would like to pay tribute to a special man. He’s someone with a very big engine between his ears, he thinks in terms of solving problems. However, he also has a big heart and he’s gifted with the ability to hear the voice of those in need. Without his willingness to listen the voice of lived experience and his commitment to eating disorders and finding a way forward, we would not be here today. He is passionate, he is tenacious, and he is a game-changer. Minister Hunt, thank you for listening.
[Applause]
I would now like to invite our Prime Minister Scott Morrison to address us.
[Applause]
PRIME MINISTER: Well Christine, thank you very much for the privilege of being here today with you and can I echo what you’ve just said about Greg. And can I welcome everyone who’s here today, but particularly those of you who have the lived experience of this.
Today is a very important day. For many it will be difficult because a reminder of any of these things is hard, and I was just looking at the photo of Tessa, the first time I’ve seen a photo. And I’ve just met Fiona and we’ve just spoken and, as a dad, as a fellow Australian human being, these stories are just so hard. That I’ve never met a braver mum – there are a few other brave mums here. I’ve never met braver people than those I’ve met this morning, who are living with this and fighting it defiantly. And as a result, what other response can we provide when you look into this issue, as Greg has, but to respond as I am announcing we are today. Listening to Jana’s story as we sat in the other room – we all know her in very different capacity, and we’ve all been very proud of her in that capacity. But in this capacity I’m most proud of Jana. Most proud of your struggle and your fight and your defiance and your success and the example that you’re showing to other Australians, particularly given your role.
And to Kelly, who I’ve had – where are you Kelly? They’re over here. We had a good chance to chat today – he’s also a dad, too – and to share our stories and his, and his fight. And again, a braver, more courageous group of Australians you won’t find. And to Butterfly Foundation and Butterfly House, here in particular, which has been the angel in the midst for them, that has come to them and provided that connection for them. That’s been tremendous. We’ve talked a lot today about what we’re announcing. We’ve also talked a lot about what more is needed into the future. I particularly want to make mention of Andrew Wallace, who’s here today, whose own family – Andrew is a Member from the Sunshine Coast up in Queensland – and he and his wife and their family have also lived through this experience.
And so this is something that I think touches all Australians in one way, shape or another. Whether you’ve had a direct experience or through a friend or through family or whatever the experience might be, you know it’s important. And one of the things we have to do is raise the level of awareness about this and the understanding that it is real. It’s real. And whether you’re a clinician or whether you’re a sporting coach, or whether you’re a mum or a dad or a friend or whatever, we need to understand that it’s real. And the best way I can do that and Greg can do that, as Health Minister, he started us on this journey some time ago. Well over a year ago. And those in this room have been going on a journey for a lot longer. And that’s why, today, we are announcing that $111 million will be applied to ensure that this is a Medicare item, this is a Medicare–scheduled item, to ensure 60 different procedures, both dietetic and psychological, are included in the system. And that’s going to help, we estimate, around 30,000 Australians a year, every single year, which is, Christine said, that is a game-changer.
But, it is just part of the game. There is so much more that we will need to do and I’m very conscious of the respite support needed for parents as well, and the family support. The bravest of families are those who deal with this, and regrettably and sadly, there is the tragedy of losing a family member. But there is also the tragedy of families just being broken apart under the pressure, and Australia is stronger when our families are stronger, Australians are stronger when our kids are stronger, and Australians are stronger when we’re reaching out and helping each and every one of those Australians deal with the things that they’re dealing with – through no fault of their own. These things, just they come, they hit you, and the resilience and the strength of Australians to respond to these as families, as communities, as friends, as institutions like we’re in here at Butterfly, is truly inspirational. And so, we’re pleased to do our bit. We’re pleased to step up and do our part, and I’m so pleased that Greg, who’s an outstanding Health Minister, has seized on this and listened and made it happen, working with all of those who provide care in this area.
And so well done, Greg, but more importantly to everyone who is here and everyone who will benefit in the future: we wish you well and we want to do everything that we can to help you be – you’re already strong – but to let your strength carry you through what is a very difficult time for you. And so, we’re very pleased to make this announcement today, we look forward to its implementation, working through with all the various groups that will be involved. We look forward to listening more about how those treatments are progressing and how that’s going and what the response is, and what more needs to be done. Because whatever more needs to be done, will be done. That’s our commitment. That’s what we’re going to do: keep listening, keep acting, keep hearing.
So, on that note, I think I’m now handing over to Greg, who can go into a lot more of the detail. But well done, mate.
[Applause]
THE HON GREG HUNT MP, MINISTER FOR HEALTH: Thanks very much to Scott, and I say Scott, because first and foremost today you’re a dad. And today is a day about mums and dads, sons and daughters, friends and family.
To my colleagues, Trent and Andrew, who have been such advocates in this space. To Christine, to you; to Susan from Butterfly; to Lucy from the National Mental Health Commission and the Chair; and then Doctor Sarah Maguire. But especially, to all of those who’ve been on the journey. To Fiona – you’ll tell your story soon – but when you told me it had the impact. To Kelly and to Cath and to Fiona, the other Fiona Wright, who’s also here; and to everybody. Today is about saving lives and protecting lives. Today is about real hope for people with eating disorders. This is the day where Australia says: we hear, we get it and it will never be the same again. And so, this journey has had so many different people involved in it, people who have talked and spoken, who have been affected. My own staff from day one said: this is our chance. It’s something that had affected our office, our staff, so many people that I’ve known. But more than a million Australians have some form of eating disorder – anorexia, bulimia, purging – and we believe that the number might be even higher, and the research will give us better and stronger advice on that front. Yes, we’ve made important steps so far. We’ve supported what happens with ED Helpline, with an additional $1.5 million.
We’ve supported the National Eating Disorders Working Coalition with over $2.5 million, and we’ve supported the trials on the Sunshine Coast, both of the first residential facility, as well as the precursor to this program, with almost $5 million. But following the advice of the group led by Susan – Professor Paxton – the Australian Government, as Scott has announced, will create the first ever dedicated Medicare service for people battling eating disorders. Yes, it’s $111 million, but it’s not the money. It’s the hope and the service and the recognition and the support – that’s what matters. And, just talking with Jana before, her journey and how she had to suffer in silence. What we hope now is that people will not only have the services, but they’ll have the space to seek that support. They’ll know that the country believes, and we are sorry that for so many people they had had to suffer in silence. But now we offer this support on a scale unprecedented.
We’re also providing $4 million to the InsideOut Institute for their work through the University of Sydney in research and translating that to better treatment and better diagnosis. It’s immensely important work, Sarah. And then, finally, I’m both delighted but a bit guilty, I have to say Susan, in announcing that the new CEO of the National Mental Health Commission will be Christine Morgan from the Butterfly Foundation.
[Applause]
I’m a little sorry, Susan, because we’ve poached the best and the brightest. Blame Lucy – she helped head hunt Christine. But what this will do is it means that the CEO of the National Mental Health Commission will have the best possible understanding of eating disorders – a condition which has the highest mortality rate amongst all of the mental health conditions – and her task will be to bring this group and others together to translate what we’ve done here, to turn this into a ten-year national strategic plan for managing and treating and diagnosing eating disorders.
Thank you to everybody for being here today. I particularly want to thank Scott, who helped make the funds available, both as Treasurer, and helped make sure, as Prime Minister, that this came to fruition as early as it has.
[Applause]
CHRISTINE MORGAN, CEO BUTTERFLY FOUNDATION: Thank you, Minister.
It truly is a ground-breaking day. I’m not going to cry …
[Laughter]
… I don’t cry, much. And congratulations to our wonderful colleagues at InsideOut Institute for doing… for receiving something that’s really going to shift things also. Sitting alongside Professor Tracey Wade, who is representative on Million Minds, and I think: let’s combine the power of research to really hit this. We were saying to the Prime Minister and to the Ministers, who have heard this from me many times before, but when you look at this illness and the fact that there’s definitely that genetic vulnerability there, we know that significant shifts in nutrition, that significant shifts in weight loss changes the brain, and when the brain is changed, those neural pathways are changed. It is not a simple matter to move out of it. And the longer it goes on for the more hardwired the brain becomes and the more treatment we need.
So, to bring together, today, in Medicare – which is the foundational piece of Australia’s public health system – a dedicated number for eating disorders, just to validate, to validate is so much to be able to say not only: oh, no, it’s not an illness; yes, it’s an illness and it’s an illness that needs its own treatment. The secondly, and I find this absolutely ground breaking, is we have said for a long time – and this is an evidence base that we’ve been working on through the National Eating Disorders Collaboration – and I want to press the pause button and say: Professor Phillipa Hay, you have led us in the NEDC since 2009 and step by step by step we’ve been building that evidence base. Tracey’s been alongside and along with Susan and others. And we know, we know, that you need to integrate medicine with psychological, psychotherapeutic and with the food. And you can’t- eating disorders isn’t about the food, but you know what? You can’t do it without the food. So Gabby, President of ANZAED, dietician – you’ve been able to lead the charge to get dietetics right at the core front of what we need. And that is amazing.
So we now actually have – it’s like a plait and how strong it is when it’s a plait – that you bring those three together. Somebody can go to a primary health physician and they will say: eating disorder, there’s a pathway, there’s a pathway. And then, then to know that it’s not only the evidence-based modalities of treatment but it’s the evidence-based dosage. So, no longer do we have those heartbreaking stories of Australians who have stopped treatment after the ten sessions, or those who didn’t even find a dietician because their GP didn’t really stop to think: maybe if I call this a complex illness and look under the lid of a chronic complex case I might pluck out from Allied Health five dietetics; that’s not exactly an open way. That person can now get evidence-based dosages – forty psychotherapeutic, 20 dietetic, with a GP or a paediatrician along the way.
Now, there’s a very special person in this room – I’m naming a lot of people, I know – but there is, and I have to, I have to, because the only reason we have got this here today is because of the collective work of everybody right across the sector. And I think that’s an incredible learning I’ve had over the last ten years, is that the collective voice of individuals – and really stopping and having our own – well I call them discussions, debates, some of those things we’ve pounded out between us – but it’s meant that at the time those of us who have gone down to see Greg in Canberra have been able to say: we know we’re carrying the sector behind it. The reason we actually were able, whilst this lengthy process – lengthy? Gosh, of Medicare. Lengthy – and I’m saying that with an inflection in my voice – because when I first heard that a clinical working group was being put together, the Department said to me: oh this takes about two to three years. And when we first went to see Professor Robinson when he received that letter from Greg in May 2017 to say: you’ve got to look at this, obviously it’s going to take years.
And, no, didn’t take years. But, but, you wouldn’t want anything less than this. Due process has meant that that working group has had to meet overtime in order to formulate the evidence base that could go up to the Minister so that he could put this in place. You can’t truncate that too much, but we have such a committed Minister that, June this year, he said: okay, let’s take that model. And he heard the fact that the model was based on very broad consultation right across the sector. We had over 300 health professions contribute by way of the survey. We had over 700 people with the lived experience talk about the cost of eating disorders. We had an expert advisory group led by Susan that actually walked through it, and we consulted with anybody and everybody. So we knew that model was what was needed.
And so we had a Minister that was committed to actually trial it up on the Sunshine Coast and actually say: how difficult is this going to be to put in place? And let’s evaluate it. We’re evaluating it with the Thompson Institute, but also with Tracey at Flinders University, to actually bring that together and to get that research going. Now, at this point I do press the pause button again because there is a person in this room who, without her skill, her ability to hear a complexity of detail, crunch it down into something, make sense of it, come out with a model, come out with standards, we actually wouldn’t have that substance to work with. So, Leslie, I am paying you full tribute. You have translated the complexity into something that we can then take and implement. So, thank you, on behalf of so many.
[Applause]
And I also want to acknowledge that in the room today – and I think this is wonderful – we have Belinda Caldwell here, who’s representing families, representing the capacity of F.E.A.S.T, and Ethra, you’re representing Families. And we have two other really special colleagues – and I think this is not uninteresting that their names have now become very similar – we have Belinda Challis from Eating Disorders Queensland and Jennifer Beveridge from Eating Disorders Vitoria. And I’m just going to put something on the table here, Minister and Prime Minister. We talk about the challenges of COAG at many different levels. I think actually in this room we might have the beginnings of a little COAG model that actually works.
[Laughter]
So let’s do it for eating disorders, shall we? So, to each and every person in this room – and I am really sorry if I have missed out anybody – but so many people have contributed to this. And actually, sorry, one thing I have forgotten to say just in that space of the states, and I want to pay enormous tribute to this, because we now look at her in her national role with InsideOut. But Sarah Maguire absolutely has led the charge in New South Wales at a state level, and the work that she has done, along with Teresa, in the state level and implementing the New South Wales plan is, I think, showing the way. So, I know we now see you in your national role, and fantastic to have you there, but what you’ve done for the state is incredible. So on behalf of so many – on behalf of so many – can I congratulate each and every one of you. But I come back to saying that the single most important voice has been the voice of the lived experience, and over those ten years, particularly on those days when it’s been particularly difficult to get going, often it’s the day I will receive a phone call from someone. I’ll have an opportunity to stop and talk, and for each and every person whose allowed me, trusted me, enough to hear your voice and allowed me to walk alongside you with a little bit of the struggle, can I say that that actually has made all the difference in the world.
There’s a long way to go, but boy, I think the planets have realigned. I think, today, it is a seismic shift. On behalf of all of us, thank you, Minister, and thank you, Prime Minister. And I would now like to call on my colleague Sarah to come and speak to us.
[Applause]
DR SARAH MAGUIRE, DIRECTOR INSIDEOUT INSTITUTE: Thank you so much, Christine, and congratulations.
What joy. I’ve been working with families and with people with this illness for so many years, and my overwhelming feeling today is one of joy. That they have been seen, that they have been heard and they have had a Government that has made them a national priority. Prime Minister Morrison, Minister Hunt, Christine, distinguished guests, Jana, our ambassador, Andrew, Trent, this is a historic turning point for people with eating disorders, their families and loved ones in this country. The tragedy and devastation of an eating disorder on a young person’s life and that of their family is often immeasurable, and when they encounter a health system that is under-resourced and unresponsive, their desperation is magnified. Isolation and years of struggle follow. This landmark enhancement to treatment and research will begin the much-needed reversal of this situation nationally. We applaud and thank Prime Minister Morrison and Minister Hunt. We will always remember that it was you that turned the tide.
We are all aware that for too long there has been chronic underinvestment in clinical care, research and translation in eating disorders, despite the unacceptable mortality rates and the personal cost to those who live with it. Today is a huge leap forward. Million Minds marked the first time that eating disorders has been listed at the national level as a priority for competitive research funding – a long time coming. Together, today, with the announcement of funding to support InsideOut as a national research and translation centre, and the much-needed reform of Medicare, we are finally on the right path. Christine, Susan and the team at Butterfly have advocated tirelessly for these changes and we are very proud to share this moment with them.
It was an honour to serve on the Eating Disorder Working Group, along with other people in this room, who were also on it and made those recommendations – Bronny Carroll, Phillipa Hay and others – and we are just honoured and very grateful that the Government heard those recommendations and so swiftly acted.
Minister Hunt has been our first consistent ear and champion in Canberra. He has made it his business to leave treatment and research for eating disorders substantially better than he found it, and he and Prime Minister Morrison have certainly done that. At InsideOut, we are very fortunate to enjoy the backing of Sydney Local Health District, led by the inspirational Teresa Anderson, and the University of Sydney. In particular, the team at the Charles Perkins Centre, led by Professor Steve Simpson, where our Institute is housed. This partnership between the health system and university allows for the Institute to genuinely work at the nexus between research and clinical care. We really are driven to improve what the clinician delivers, and therefore what the patient and family receive. And that is the yardstick by which we measure ourselves. If we have not changed what the patient receives then we have changed nothing.
Today is a great day of change for patients and for families. The Government have now created the framework for appropriate doses of community care to be delivered to people with these illnesses. And now, it is our job at InsideOut, with the money that the Government have given us, to translate evidence-based practise into care to ensure that those NBS items are informed by the best evidence, the best new treatments, and that clinicians delivering those rebated sessions are trained and equipped to deliver evidence-base care, resulting in the best outcomes and recovery rates. And InsideOut is committed to doing this, along with our partner organisations in every state. I agree with Christine, we need to build a national coalition. We need to work as a group to ensure that evidence is translated into practise in every location.
We are proud to be identified – beyond proud – to be identified and funded as the bridge between research and clinical care, driving innovation, developing better treatments, and driving those treatments into everyday practise. Through our research stream, our suite of evidence-based workforce training programs, and with this funding to develop strategy structures and novel mechanisms to ensure translation, we will improve outcomes for people with this illness and reduce unnecessary deaths. There is much work to be done but today is one of gratitude and celebration.
On behalf of the people and families that we serve, we thank you sincerely.
[Applause]
CHRISTINE MORGAN, CEO BUTTERFLY FOUNDATION: Thank you, Sarah. And now I guess this is probably the most important part of our time today, which is to hear from those with the lived experience. And I hold on here and I take my hat – which I’m not wearing – off to our wonderful founder, Claire Middleton, who set up Butterfly with a vision of representing the voice of the lived experience. So, first cab off the rank for that I think, Jana. We have never had somebody with a public profile who has been prepared to represent this illness. And In fact, I remember it was one of the things that the Minister asked me back in May 2017 was: where are your public faces? And the stigma that has gone with this illness for so long, the misunderstanding that people have about it and the fact you can’t judge it by physical appearance, have been just such barrier. And I think you’ve just broken through that barrier for us, so please come up and join us.
[Applause]
JANA PITTMAN: Thank you, everyone, and thank you to the Prime Minister, Minister Hunt, the Butterfly Foundation and InsideOut Institute, which I am a very proud ambassador for. And you are right, and I have to say my heart is going at 100 million miles an hour and I’m fighting back the tears, because I am extremely nervous to be talking about my experience on such a public forum, but I am such a public figure, and you’ll hear the slight movement in my voice. But I thought I might actually take you back on a journey with me in 2007 so that you can actually experience what it felt like at the time for one of the episodes I actually went for. So here we go.
In 2007, the World Championships in Paris, and in front of 80,000 screaming fans, there I was in the green and gold tracksuit. I had just won the World Title. Our Aussie anthem is playing in the background. Our little flag’s way above everybody else. We were literally on top of the world when it comes to track and field in sport. It was the second time I had won a world title like this. In fact, it was only seven months after I had had my beautiful little boy, so I should have been in the most incredible place you could be. It was actually only 12 months before the Beijing Olympic Games and I was odds on favourite to win. But very few would know how I’d spent the night before and the many nights prior to that – pinching my waist and not knowing if I was going to be good enough to win, because I was so afraid of the outcome, so afraid of being too fat, so sure I wasn’t disciplined enough to deserve the medal that would soon hang around my neck.
I remember standing vividly, looking in the mirror critiquing everything that I saw and being so ashamed with guilt and anguish and self-loathing that I wasn’t prepared to race. And it took a lot of effort to get my coach to give me that confidence to run the next day, afraid to take my tracksuit off, that I’d be judged for the body that was behind the Australian flag. In fact, it got to a point that night that I was so overwhelmed by fear and anxiety and the self-loathing that I went: oh stuff it, who cares? I went down to the dining room and ate everything I could get my hands on, everything. All the desserts, all the food you could possibly think of. And then it set in – the guilt, the fear, the shame, and I spent at least an hour or two hugging the toilet bowl trying to rid myself of that pain and guilt. But no one would know, would they? Because the following day I stood up in front and represented my country, won that gold medal and became the world champion. And that’s all we saw – the press conferences, just like this, champagning down on us for how wonderful we are as Australians.
So I hid that guilty secret for years and years and years. Thirteen years of bulimia, of my parents going through that agony with me. And it took me a long time until I actually sought treatment, because I was so afraid of what people would say. I was already labelled drama-Jana, let’s be honest, and what would have this done: if I had of come out and admitted that I was a failure on this point? But that’s the point: I wasn’t a failure. I still achieved through it all and I’m now open to talking about this message and sharing it with young girls and boys around Australia so they do not have to go through the same experience I did.
This can affect anyone. It doesn’t matter how successful or how great you are. I’m one year away from becoming a doctor, and every day I still get plagued with that little voice. I can hand-on-heart say I haven’t had an episode like that for a number of years now, but it doesn’t mean that I don’t call on Sarah occasionally and say: oh my god, I need a little bit of a chat on the side, and she’s just decided she’s coming over after this conversation then talking to me for an hour, I can guarantee it.
[Laughter]
But sadly, it’s too common in sport – where our bodies are on show regularly – and dancing and in any types of environment where someone may comment on your body and that might be that tiny trigger. It’s also been in my family, so the genetic component is really strong. And I have two beautiful little daughters who I watch with an eye. And in fact, Sarah and I were just talking – my son made the first comment a few weeks ago, saying he feels fat and out of shape, and I’m thinking: oh my goodness, we’ve got to protect everyone in this country. But with over 1 million people suffering on so many different levels it might be, to my extent, it might be to someone who’s just having a little bit of a negative voice in their head; we have to help everyone so that it doesn’t escalate out of control, because some, as we will hear soon, do take their life.
And something that with this new, incredible budget that you’re bringing out, will make a real difference and stop that from happening. So now, almost as a doctor, I’ve seen how effective good medicine and psychological treatment can make an enormous difference in people’s lives. But you have to be able to afford it and have access to it and believe in the system. And that’s what you, the Prime Minister and Minister Hunt and the Government, are now doing. You’re helping legitimise, destigmatise and give hope to millions. It will do this by giving the much needed funding for Medicare, but also continue the research that InsideOut Institute is doing, both into research around the disorder, but also in translating that into actually good medical practice.
I am so, so lucky to be out the other end. Don’t get me wrong, as I said, there are still a few days where I have a few mishaps, but with good help, patience and education my future feels very, very free. The meaningful steps taken today will not just trickle down to patients; they’re going to cascade, so that families don’t have to go through what you did. On behalf of all the people who have suffered this, I want to say thank you. Thank you for believing in us and making a difference, and you’ll see how incredible this gift will be. Thank you.
[Applause]
CHRISTINE MORGAN, CEO BUTTERFLY FOUNDATION: What an ambassador. Thank you. Thank you.
And now for another story. And, Fiona, as we go into your story, I’m also going to just mention again, Judy, who lost Alana. And one of the fights that we had – and boy, you were a warrior woman with this one, Judy – was she fought through the Coroner’s Court to make sure that for the first time ever the death certificate would mention the cause of death as being anorexia nervosa. It’s not on the death certificates because what’s on the death certificate is the physical cause – whatever that may be. And, Judy, that was a game-changer too. Really sad, but I guess it showed that out of horrible things, you showed me you can pluck something. And another real warrior woman – another real warrior woman – is Fiona.
Fiona, actually, I am still going to own the fact that you were the inspiration that got us to Minister Hunt. You were behind our MAYDAYS 2017, and MAYDAYS 2017 is when we got into Minister Hunt’s office. So, you began a journey with us and you said to me: I have to someone turn Tessa’s life around into something that can be heard. So, how about coming and telling us?
[Applause]
FIONA RYAN: I don’t want to talk to you today as politicians and important guests and members of the press. I just want to talk to you as parents and family members. I’m not an expert about eating disorders, I’m just a parent with a painful story, so I’m going to tell it to you.
If you’re a parent you know that you’d do anything for your kids – go to hell and back, as they say – and that’s where I’ve been for the last ten years. It all started when Tess developed an eating disorder when she was eleven. She’d just started going to school… getting ready to go to high school and she wanted to get fitter and healthier, and I thought that was a good thing. We can all do with a bit more exercise and a bit less junk food, so I supported her, and it wasn’t until a few months later at Easter time that I started knowing that things were getting out of hand. She was becoming obsessed with what she ate and how much she exercised, and I knew then that something was wrong. My husband and I started to look for help but we couldn’t find anything that would cut off this disease before it got started.
The next months were filled with fighting to find somebody to help us. We heard things like: just go home and tell her to eat. Oh wow, I wish I’d thought of that.
[Laughter]
Or, give her a few chocolate bars and a milkshake and she’ll be fine. A number of people made it very clear that they thought I was an overly anxious mother and that Tess was just a naughty girl, a manipulative teenager. Nothing could be further from the truth. Each week, things were getting worse. She was eating less and exercising more and we couldn’t stop her. And I know many of you will be thinking: for God’s sake, woman, just stand up and be parent and make her eat. And I know you’re thinking that because many people told me that. But it’s not that easy. We tried everything we could to make her eat. We sat with her, encouraged her, enticed her with her favourite foods, stopped her from going to the gym, playing sport, gave her consequences when she did the wrong thing. None of it made any difference. We offered rewards for her when she did the right thing and punishments when she didn’t, but nothing worked. All she wanted to do was lose weight. Nothing else mattered.
She fell away from her beautiful friends and isolated herself. She became secretive and depressed. She went from being a sensitive, sweet, kind young girl to being anxious, agitated and aggressive. Within months, she was eating almost nothing and I was beside myself with worry, but she didn’t look emaciated so very few people thought there was anything wrong with her. In the end, I took her to my local hospital and in an emotional meltdown I told my story. The doctors were very sympathetic but said there was nothing they could do until she was critically ill – come back then – and go home. I refused and I stood in the emergency department crying for five hours until somebody found Tess a bed and a paediatrician to work with us. By the time we got Tess’s illness recognised, she was so severely ill that none of the intervention strategies worked. They were impossible to implement and totally ineffective.
Our lives for the next five years were the stuff of nightmares. There were times when Tess would not eat anything, not a crumb, not even a sip of water would pass her lips. We would be discharged from hospital, go home and spend hours and hours trying to convince her to just have the smallest morsels of food and water, without any luck. Within 36 hours, we’d be back in emergency with a dehydrated and critically ill child. Once we were told not to leave the table until she ate something, so we sat there for ten hours encouraging, cajoling and threatening, but with no result. And after a few hours’ sleep and another ten hours at the table we were again driving back to the hospital.
There were times when Tess was compulsively exercising, and to make sure this didn’t happen she was not allowed to go anywhere without Bruce or I. We had to follow her around the house. I spent weeks sitting on the floor in our hallway so that she could move from room to room and still be seen. I stood in the bathroom when she showered, I made her keep the toilet door open when she went there, and I even slept in the bed next to her to make sure she was not waking up in the middle of the night to exercise. When Tess started to eat it was excruciating. Something inside her was telling her she didn’t deserve to eat, so every bite was mental anguish. She understood all the rational arguments that she needed to eat, but she was terrified. She had to eat six times a day – breakfast, snack, lunch, snack, dinner, supper. She would dread each meal and regret each bite. It might take an hour to support her through the meal and then we would be up to preparing for the next one. Every day was hour upon hour of food and anxiety and argument, and it was our whole family’s life.
No one but Bruce or I could help her eat. No regular person would think to check her pockets and sleeves for pieces that she spat out if you glanced away from her. No one would imagine you might have to make sure she scraped down her bowl for every crumb of muesli, or to look under her tongue for that last piece of toast. So for five years, we juggled life so we could be there for every meal. We took long service leave, carer’s leave, leave without pay, we went part time in our workplaces and we went into debt to make sure we did what we needed to keep her alive. We got a mental health plan for Tess and for her ten visits to the psychologist were finished before the beginning of term one. So we paid for the other 42 visits a year ourselves. Because her illness created all kinds of physical problems we visited dieticians and physios and felt like it was an endless round of doctors and medicos and bills and worry. You can’t truly understand what living with an eating disorder is like until it comes to your house and the snippets that I’ve shared with you today just brush the surface of our experience. But I want you to understand that our family often felt like we fought on two fronts. We fought an eating disorder and we fought the system in order to get recognition, support and treatment that Tess needed.
I think I need to build up.
Tess spent almost 200 days in hospital. She tried family-based treatment, day clinics and outpatients, and in the end we were all drowning – Tess, her twin brother, her sister, my husband and I – we were all going under. Tess was trying hard to get well. She fought bravely every day but the disease was too much for her and for us as a family to manage on our own. We were physically, emotionally and financially exhausted. And finally, at the age of 17, my beautiful Tess took her life. I know that Tess felt guilty that her illness had affected our family to such an extent. I know that she worried about her twin and how our family was coping. I know she felt like a burden on us. I don’t know if the changes of which have been announced here today could have saved Tess, but I do know that being able to get help from Medicare would have meant more than just financial support to my family. It would have shown us that we weren’t fighting alone, that people recognised and understood how devastating eating disorders are and were willing to support us as we struggled to keep our daughter alive.
There’s still a long way to go in the treatment of eating disorders. We need more education for doctors and hospital staff so they understand the complexities of these issues. We need treatment options and respite care for families and we need a mental health and physical health system that is going to work together to provide the best quality care. But the steps which we’ve announced today take us closer to a future where no family needs to feel like they’re fighting alone.
On behalf of all the homes where eating disorders exist, I say thank you to the Minister for Health, Greg Hunt. To the Prime Minister, Scott Morrison, and to all those people who fought to get eating disorders recognised and supported, thank you.
[Applause]
CHRISTINE MORGAN, CEO BUTTERFLY FOUNDATION: There are no words, there are no words. I know your deep faith and you were given the strength to speak today, and thank you that you were and that you did. And I think at this point I’m just going to through it back to our Prime Minister and Minister to take questions.
[Laughter]
All yours, guys.
PRIME MINISTER: Look, I’m happy to take questions but after what we’ve just heard, I hope Australians heard it too and I’m sure they have, Fiona, for Tess. And we’re just so pleased that we can recognise eating disorders and the illness and the family-breaking curse that it can be. And we’re going to fight it, we’re all going to fight it, and you’ve incredible courage today. I think you’ve taken up that fight on all of those who have suffered’s behalf. So, happy to take questions, but I would like to do, though, if it’s okay with the media – can we just take questions, please, on these issues? And I will do a press conference, don’t worry, outside on other things. But right here and now, particularly with Christine here and InsideOut here and everyone else here, if there are questions you’d like to put about the initiatives we announced today I’d be very happy to take them.
JOURNALIST: Prime Minister, this is a question about [inaudible]. Are there any plans to increase the rebateble sessions for mental health…
THE HON GREG HUNT MP, MINISTER FOR HEALTH: So, these initiatives have come out of the experts in eating disorders and also the Medicare taskforce. I have said to Professor Bruce Robinson that as they assess other mental health items, if they believe that more needs to be done, they just recommend it and we’ll do it.
JOURNALIST: [Inaudible] there’s an item number for eating disorders to help with this whole issue of reporting statistics. So, cause of death?
THE HON GREG HUNT MP, MINISTER FOR HEALTH: Yes well, I think it’s a very important part of this is, first and foremost, it’s treatment, but it’s also about recognition and acknowledging, exactly as Scott said earlier. And that will help with the collection of greater detail. We think that the figure of over a million may be an underrepresentation and we need more evidence. Part of Sarah’s job, part of Tracey’s job with the Million Minds mental health research mission is to get to the heart of the true extent of the challenge.
PRIME MINISTER: Can I just stress again, this is not capped. The estimate of 30,000 is just an estimate of 30,000. If it’s more than that, well, it’s more than that. And it’s all supported, it’s all funded.
Well, it only remains for me to thank you, Christine, for hosting us all here today and also to commend you on your appointment as Chief Executive to the Mental Health Commission, and Lucy, thank you for the great work that you do there, and such a good hire too.
[Laughter]
We’re very pleased about that, so I want to… on our behalf, thank you for your kind words of appreciation, but look, this is why we do this job. This is why we do this job. This is why, as a Government, we work hard to put ourselves in a position where we can do this. This is what it’s for. This is why we want the Budget to be strong. This is why we want the economy strong, so we can do this. This is what it’s about for us.
CHRISTINE MORGAN, CEO BUTTERFLY FOUNDATION: Thanks you.
THE HON GREG HUNT MP, MINISTER FOR HEALTH: Thank you.
[Applause]
CHRISTINE MORGAN, CEO BUTTERFLY FOUNDATION: Thank you, and can I invite everybody out to the courtyard for some refreshments? Some chats - exactly, Judy, just to relax a bit. So, thank you. Let’s go out the front. Thanks.
