Tools and hope inspire all in quest to oust ‘Ed’

Tools and hope inspire all in quest to oust ‘Ed’

The catalyst for Australia’s first eating disorder conference for families and carers occurred in November, 2011, when three Australians (June Alexander, Bridget and Tim Bonnin) attended the first FEAST Symposium in Alexandria, Virginia, USA. Inspired and determined, the Aussies returned home and began making calls.

Within a month, Elaine Painter, leader of the Eating Disorder Outreach Service (EDOS) in Queensland, came on board. Impetus grew; our dream for the At Home With Eating Disorders conference was coming true. A committee was formed with representatives of The Butterfly Foundation, FEAST, (EDOS) and the Australia and New Zealand Academy for Eating Disorders (ANZAED) and a date was set.

More than 260 people, 70 per cent carers, attended our conference in Brisbane, on May 24 and 25, 2013. Our dream had come true. Big time. The conference provided opportunity for researchers to disseminate their latest findings, and for treatment professionals, families and people who have recovered from the illness to share their insights gained through experience. Participants explain why this exchange and sharing of information is important:

RESEARCHERS

Professor Cynthia (Cindy) Bulik (USA)

The At Home With Eating Disorders, conference for families and carers left me feeling that we have to paddle faster and harder to figure out causes and improve treatments for these pernicious disorders.

Every scientist in the field should attend a carers’ conference. There is nothing more powerful than sitting in an auditorium packed with parents, partners, sufferers, and survivors to remind us why we do what we do. Every study we design, every paper we write, every hypothesis we generate and test has the potential to transform lives.

Several things struck me at the Brisbane conference.

It was resoundingly clear that eating disorders affect families from all socioeconomic levels, regions, races, and parental personalities.

Families are desperate for help. Maybe it was a mother who lived three hours from the nearest specialist service who gave me a glimpse into how challenging it is to cobble together a treatment team in far rural areas and how important it is to have a GP who can do his or her best under the circumstances.

Maybe it was the virtual mountain of questions submitted to the Meet the Experts panel, all of which deserved more time and attention than we were able to give.

Maybe it was the unprecedented number of parents talking about dealing with siblings who had eating disorders and listening to the herculean efforts they needed to undertake to deal with two children with eating disorders either sequentially or simultaneously.

Maybe it was all of the emotion in the room, the tears, the pleas for services, the determination of parents to make things right for their children and from partners to help their loved ones. Most likely it was all of these factors that once again rejuvenated my passion for eating disorders research.

Professor Daniel Le Grange (USA)

The Brisbane conference represents a wonderful milestone for Australian families –ensuring parents have a voice and are able to take their rightful place in the recovery of their kids – front and centre!

To meet many parents at various stages of their child’s recovery, to hear their heartfelt words of worry, pain, but also hope and joy – this was a standout moment for me.

It is too easy to focus only on the conversations of our colleagues when it comes to treatment strategies and the needs of our patients. Hearing first hand from parents, at a conference for parents, serves as a fresh reminder that we should of course never overlook the important voice of the main advocates for their child’s recovery, the parents!

When we truly value parents’ input in their child’s recovery, then we should also sit down, talk, and listen to the parents’ thoughts, advice, and concerns about our treatment efforts and research directions.
Take home message: Awareness of a tremendous need for parents to know that they have a loud and clear voice that is respected by all of us involved in working toward recovery for eating disorder sufferers.

EATING DISORDER OUTREACH SERVICE (EDOS)

Elaine Painter

My first impression of the conference started with the clinician workshops hosted by ANZAED which set the scene for the high standard of presentations that were to follow. The presenters were passionate about recovery and although I only attended Cynthia Bulik’s workshop, feedback from the other two was excellent. Janet Treasure, as her name implies, is a treasure for carers and clinicians alike. To have a workshop where the leader didn’t talk down to carers, or assume that they were anything but educated articulate and passionate people was refreshing.

This conference highlighted the importance of valuing carers as equal partners in the recovery journey. No  professional development aimed at clinicians alone can ever be enough without equal carer information, education and support.

This conference opened up a space for carers to be recognised on a variety of levels these included; as parents, partners and others passionate about supporting their loved ones, as a group of people whose individual needs have been neglected in the health arena, as a group of competent members of society who have been marginalised from  a health service that they are required to contribute to, but are unable to access.

SUFFERERS OF ANOREXIA NERVOSA

Jennifer Marsh (Queensland)

This conference was a positive, heart-warming and inspiring experience! Although the focus was on families and carers of those who suffer, as a long-term sufferer of Anorexia Nervosa (AN) I found there was plenty to be learnt and to benefit from. The calibre of international professionals presenters made me feel grateful, motivated and enthusiastic. There IS HOPE and there ARE PEOPLE out there who truly UNDERSTAND eating disorders and who are devoting their careers to developing new and better methods of treatment so that sufferers are NOT caught in the prison of AN for more than 20 years like I have been.
Standout moment: A brief discussion with Prof. Steven Touyz and Prof. Cindy Bulik, where I shared that although the anorexia thoughts and voice are not 100 per cent gone, they have diminished significantly and I, the real Jennifer, have grown, stronger and more powerful than the negativity and lies of the illness. As I spoke about this, the expressions on the faces of these two incredible researchers were full of genuine understanding and acknowledgement of my struggle and my achievement thus far in recovery, that I actually felt tears well.

This conference was full of true support, determination and assurance that we are not alone, not as sufferers, carers or families. We are NOT ALONE because we have a multitude of professionals who are willing to learn from and hear us in order to help us survive and go on to thrive and overcome this illness.

Nina Stewart (Victoria)

I live in a rural area and was fortunate to attend the conference with my husband, leaving our young children at home in the capable hands of grandparents. The focus of the conference, being ‘carers and families’ of sufferers, was relevant to all attendees. Whether the Eating Disoder (Ed) likes it or not we all belong to a family (close or distant) and we all need a carer (one or more) to nurture us to full recovery. The conference was timely and provided us with the opportunity to learn about new therapies, most relevant to us being Uniting Couples in the treatment of Anorexia Nervosa (UCAN).

Standout moment: the message that recovery is possible will sustain my motivation. The underlying factor needed to make this achievable is for the sufferer’s family and treatment team to always maintain HOPE that quality of life will improve and recovery is attainable.
My husband and I went home feeling we were not alone in fighting the battle. What did I pack in my suitcase to bring home? The message that I must continue to fight the anorexic bully, tap into new therapies, and include my partner in my recovery journey.  This one day will lead me to a life free from Ed’s control.

CARERS
Bridget Bonnin (Queensland)
The conference met its aims well in providing carers and families with access to expert knowledge and skills. The sessions included information that was relevant to carers with loved ones of all ages and stages of illness. Sharing knowledge and experience between families and between families and clinicians has to move the whole field forward. It isn’t possible to cover everything in a two-day conference but this was a great start.
Another aim was to have families leave the conference feeling more able to support their loved one. Many parents said this is exactly how they felt. Informed and empowered families and carers lead to better outcomes for sufferers, which is the ultimate goal.
A third aim of the conference was to provide families and carers with opportunities to meet people with similar experience in a safe and supported environment. The conference met this aim very well. The social events were well-attended and abuzz with talk. During the conference breaks, the foyer was crowded with small groups of people engrossed in intense conversations with tears, laughter and many hugs. The homeroom provided a quieter setting for more private conversations. Some parents and carers said this was the first time they felt safe enough to talk to others about their loved one’s illness.
Standout moment: Watching our speakers, leaders in their field, taking endless questions from the floor, staying back after their talks to speak with carers and families, then mingling with the crowd during the breaks – answering and asking more questions, sharing their insights but also listening and learning from the experiences of carers, families and survivors. 
A conference like this brings eating disorders into the light to be discussed in an open way just like any other illness. It lightens the load of stigma and blame that many families and sufferers endure. It validates the vital role families and carers can play in recovery. It brings families together to discuss strategies for effective advocacy to progress treatments and improve outcomes for sufferers.

Tracey Hayden (New South Wales)

Conference sessions ran to time, the content was relevant and meaningful and there was something of value and interest for all attendees. To have Janet Treasure, Cynthia Bulik and Daniel Le Grange presenting at this first carers’ conference was amazing.

Standout moments: For me, this was leaving the conference feeling we had helped our child recover using the most effective treatment possible. Family-Based Treatment is not an easy process, and at times I did ask myself if we were doing the right thing but after hearing from Daniel Le Grange and Andrew Wallis I have no doubt we made the right decision.

The other standout was the desperation of parents and carers for information. For example, they were desperate for practical information on how to face the daily challenges when caring for someone with an eating disorder. This topic is worthy of an entire session at a future conference, particularly for parents of adolescents.

I felt isolated from my community and life in general when my daughter was in the depths of her illness. My large family all got on board to support our daughter/sister but even so, a sense of loneliness was pervasive.  This illness impacts the life of not just the sufferer but also those supporting them. Therefore a conference like this is reassuring – to find that others understand what you are going through and, more importantly, others have been there before you and have come out the other end intact.

Attendance at such a conference should be mandatory for health care professionals. To hear first hand how “tough” some parents/carers are doing it gives a real human face to this illness. One-hour weekly consultations do not allow our professionals the time to really understand how difficult this illness can be for many families. On a personal level, this conference raised many issues that remain unresolved. As a parent you spend much time making sure everyone else is okay and forget to check on yourself. I am still dealing with the trauma of my daughter’s illness. Thankfully I have had the insight to now seek psychological support – for me. The conference confirmed that this is not self-indulgent but necessary.

Fulfilling the role of a buddy: I was buddy to a sufferer – a brave and courageous woman. We laughed and cried together and got to understand better what it was like to stand in the other’s shoes.

Take home messages: There is much work to be done in raising awareness and education, in lobbying our government for more funding to improve treatment facilities, and provide more support services for parents/carers/partners and siblings. I left the conference knowing full recovery is possible, I have new knowledge under my belt, and many new friends in a community I never expected to be part of. 

Sue van de Ven (Victoria)

As a parent/carer living in a rural/remote region in North East Victoria where access to mental health, and in particular Anorexia Nervosa treatment, is limited, experiencing the enormous wealth of professional knowledge and support offered to carers and families at the Brisbane conference was a godsend.

Standout moment: Gathering specialist information regarding care and treatment while liaising with other carers under the one roof has given me a renewed zest to continue fighting – something that was very much needed but had been lacking and unavailable throughout this battle to help my child recover.  Such a conference is both invaluable and necessary for not only carers and sufferers but also health professionals and researchers.  Both firsthand and professional expertise was shared to a wider audience.

Take home message: Hearing that ‘Recovery is Possible’ and renewing my ‘Hope for every ED sufferer’ was a huge take home message for me.

Becky Henry (USA)

As a FEAST board member, a parent and a guide for other parents, my overall impression was that this was fantastic, hope-filled and cutting edge science by top researchers who care about families.

Standout moment: seeing clinicians believe in the family role in treatment and recovery.  This is so different from my personal experience and that of many of my clients who are caregivers.

Take home message: deep reassurance that there are providers and researchers who truly care about parents and are working passionately to bring families more hope and answers.

Nicki Wilson (New Zealand)

Standout moment: Hope! Recovery from an eating disorder is possible for ALL sufferers. Recognition that sufferers of eating disorders and their families are not, contrary to my previous impression, alone and lost in a wilderness of misunderstanding and despair. In fact a team of fantastically qualified and dedicated experts around the world are committed to gaining a better understanding and provide evidence-based treatments.

The Brisbane conference promised and delivered many benefits. Carers and sufferers gained support and knowledge, from each other, and from “qualified experts”. Health professionals and researchers benefited by learning from those at the coalface, in a setting outside of their clinics. By bringing the eating disorder into the open, we are paving the way for victims to reclaim their lives.

I am committed to exploring ways to hold an event of this sort in New Zealand. Eating disorder sufferers, their families, and health providers, will benefit hugely from meeting with each other, and hearing experts talk about the latest research and treatment developments. We are geographically distant from where most of the work is being done, but there is no reason why we cannot benefit from the new knowledge and improvements in treatment.

As a parent of a daughter who is in recovery from an eating disorder, I was keen to meet others in similar circumstances, to share stories and gain ideas, strength and friendship. As a member of the Boards of EDANZ and FEAST, I was interested to meet others in support and advocacy roles, to learn how they are making progress and particularly to establish contact for ongoing collegial support and inspiration. And finally I wanted to learn from the experts. These goals, hopes and expectations were exceeded!

Learning about, and seeing in action the work being done by The Butterfly Foundation and FEAST was particularly helpful and motivating in my EDANZ role – I have returned to NZ with renewed energy and ideas for building on the service we currently provide to carers of eating disorder sufferers around NZ.

Every session provided further insight and understanding of what life is like for a sufferer, and inspired me to find ways to improve services and support for these people and their families. Just knowing that experts such as Janet Treasure, Cindy Bulik and Daniel Le Grange are out there working hard to acquire new data and establish proven treatment models is motivating. I have returned to NZ freshly inspired to support and advocate for sufferers and their families with a clear vision of what freedom from ‘ED’ looks like.

Sandra (Victoria)

After many years of having our lives turned upside down by this disease, the conference was the first time I have ever spoken to other carers. Now I can’t stop!

Standout moment: I met an amazing lady on the bus after the conference. She is a sufferer who has decided to seek help for the sake of her husband and two children and so attended the conference. She very quietly spoke about how AN made her feel, the constant noise in her head and her wish to recover. She was quite simply the bravest person I have ever met and she gave me such an insight into what my daughter is going through it was one of the most important moments of the weekend.

Take home message: I departed for home armed with an overload of fantastic information, practical tools and hope, the most important thing!

Belinda Caldwell (Victoria)

Standout moments: The articulate, brave, persistent and thoughtful parents and carers at this conference have helped me to see that we have a real chance of harnessing this experience into a united voice for advocacy. On a personal note, was insight into the value of focusing on warmth in our interactions with our daughter.

Take home message: Recovery is possible and families and carers are well placed, when well resourced, to drive or support this process in a positive way.

Danny Biggs (NSW)

The conference was excellent. Two sessions were especially worthwhile, practical and pragmatic for me:

• The session with the carers on stage role playing the conversations they had when in the throes of their respective family eating crises; and
• The session with the four recovered young adults, giving their perspective on recovery, what helped, what didn’t, emphasizing the role of carers in their recovery.

Hopefully the footage will be made available to all, as a source reference. A must for all carers!

Another highlight was the unique opportunity to approach all speakers during break times. They were all approachable and ready to answer questions and offer advice. I wholeheartedly support this conference becoming a regular event.

AND FINALLY, FOR NOW:

Professor Cindy Bulik

Kudos to the organizing committee and The Butterfly Foundation, FEAST, Eating Disorders Outreach Service (EDOS) and Australia and New Zealand Academy for Eating Disorders (ANZAED) and special thanks Jeremy Freeman for allowing me to bring UCAN to Brisbane, and to June Alexander, survivor and advocate, for inspiring so many people around the world.