At Home with Eating Disorders Conference 2015 – Setting the National Agenda #myreality

Good morning – what an incredible gathering of so many of us – coming together to share our stories, learn from our speakers presenters and each other, and to be a collective voice of those who care for someone with an eating disorder.

Welcome to each and every one of you – parents, partners, siblings, clinicians and professionals, and all who have experienced an eating disorder. Eating disorders are complex – and each of you contribute to telling the reality of ‘living at home with an eating disorder’. A reality that must be told at all levels of government and community – in Canberra, in our capital cities, in our regional and rural areas and in our local communities.

I extend this welcome on behalf of all those behind this conference – FEAST, ANZAED, CEED and Butterfly. We welcome in particular our keynote speakers – Laura Collins Lyster-Mensh, Carolyn Costin, Professor Tracey Wade and Dr Linsey Atkins. We also welcome our presenters and panel representatives – over 20(!) carers and clinicians who have given freely of their time to share with us at this conference.

In 2015 there are close to 1 million Australians suffering an eating disorder. That means at least 1 million carers are also impacted. However, heart-breakingly, we also know that less than 25% of those who are suffering are currently accessing treatment. Some of that is due to the nature of the illness itself and the resistance to seeking help, but in the vast majority of instances it is because people cannot access the treatment and support they need. What is available is piecemeal and postcode centric. Heaven help you if you live in regional or rural Australia.

Butterfly is pulling out all stops at the national level to fight for the rights of those with eating disorders to be recognised and responded to within the public and private health systems. There is a mighty long way to go!

Butterfly recently commissioned Deloitte Access Economics to do a follow up report to Paying the Price – the report that for the first time in Australia quantified the prevalence and cost of eating disorders in Australia. The second report – Investing in Need – quantified the cost benefit of investing in optimal treatment. It makes a compelling case for investment at the federal level – every dollar spent on transitioning to optimal care brings a benefit of over $5 in cost savings. Optimal care made available as early as possible in illness significantly reduces the impact of the illness. Not rocket science!

So why in this wonderful country of ours where there is optimal treatment for so many health issues do we still not have access to our own Medicare number, we still do not have fully integrated continuums of care with a focus on services in the community rather than hospital, and most significantly we still do not have the structures or financial support to ensure anyone and everyone affected, including carers, can access the assistance they need – both in illness and in recovery.

I have learned a great deal over this past year working with politicians and departmental people in Canberra. I have learned to not underestimate the effort it is going to take to get us to the point where someone with an eating disorder has access to the same high level of care as if they were suffering from cancer. Access to the same high level of care as someone who is suffering from cancer is a fundamental right of anyone impacted by an eating disorder and we are determined to fight for that right.

In addition to our work with the National Eating Disorders Collaboration, Deloitte Access Economics and so many of you in this room, we are also piloting at Butterfly innovative new services such as the Intensive Outpatient Program licensed from Carolyn at Monte Nido. We must gather all the evidence we can to demonstrate what is needed. I also know the wonderful work that is being done here in Victoria through CEED and EDV, in Queensland through EDOS and others, in SA through EDASA, in NSW with CEDD, and at a national level ANZAED and FEAST – so many people are working to build our knowledge base. We know what we need.

However, logical argument, an evidence base and economic reports are not going to be enough. The recent National Mental Health Commission Report by Professor Alan Fells states, for the first time in such a report, that eating disorders are serious mental illnesses that are significantly under-funded. Thank you! We know that already! The real issue is what is going to be done to improve the situation.

The federal Health Minister is currently convening her Expert Advisory Group around implementation –hopefully – of the recommendations in the Fells report. We must, must, must ensure that eating disorders are included. At the moment the federal government is failing to take a national leadership role and establish a national strategy and agenda for eating disorders. There is no national requirement that a minimum level of investment be made in eating disorder services.

We will continue to fight for what we need – a commitment from the federal government for a national strategy for the development of eating disorders services in Australia PLUS the funds to enable that strategy to be developed and implemented. It is not okay for us to wait another year, and then another year for this to happen. Every year that passes with us trying to make the case in Canberra sees too many Australians losing too much of their lives to the insidious reality of living with an eating disorder.

Enough! The promise I make you today is that Butterfly will not cease to fight for what we need at a national level. In fighting that fight we are also fighting for our own survival – we can no longer exist on fundraising and philanthropic giving. While we have capacity we will speak up – or shout – at an increasingly loud level. That is what will make a difference in Canberra – a groundswell of Aussies calling for what is their fundamental right – access to treatment when and where they need it!

The story can only be told with your help. You are the reality. You know intimately the struggles and challenges of trying to find treatment and support. You also know what works. Your experience of eating disorders is at the heart of articulating the reality and putting a face to the difficulties that you face in accessing treatment. You know what recovery looks like. You know what you need in terms of ongoing support.

This conference is a celebration of hope, reality and commitment from so many. We can make a difference. We can succeed in getting this firmly into the national health agenda. But I know that it cannot be done without the contribution of many – each of you has a unique contribution to make. Your story and your reality is incredibly important. Your skills are incredibly needed.

I believe the next six months are critical. Butterfly will be instigating a grass roots awareness campaign to gather together all our voices. Please keep an eye out over the next couple of weeks on our social media channels. Please add your voice, your skills and your support.

Thank you.

Christine Morgan

CEO, The Butterfly Foundation