1. How did you find your path to parent-advocacy?
When our daughter was diagnosed in 2011 with anorexia nervosa, I was shocked to my core and confounded by how much my perception of AN differed from the reality. We received excellent evidence based treatment which supported our critical role in our daughters treatment. Nevertheless, I was extremely challenged, and a bit disappointed, by the different way we were treated by our social networks and community, and my employer, in terms of support at this difficult time. Also watching my daughter struggle with shame at being thought vain and selfish for developing this disorder also made me incensed at how the focus on the thin culture as a cause of this disorder impeded recovery for sufferers.
My professional life has involved a lot of advocacy for change in the provision of health care, and for disempowered clinician groups within the health community, so in many ways becoming involved in advocacy for EDs was a natural transition, enabling me to use knowledge and skills I had developed professionally. Being able to influence change for families following behind us, is a healing process for me and helps me to make sense of what has been the most difficult and traumatic situation our family has faced.
2. What does your advocacy work consist of/ how do you define advocacy?
From the beginning, I felt quite strongly that being open about our daughters ED (with her permission) was our first form of advocacy. Each interaction with the school, her friends, our social network, her basketball club and others has been a chance to calmly state what was wrong with our child, what caused it, that she didn’t choose this illness and what we were doing to help her to recover (FBT)- and most importantly that recovery was a realistic and expected outcome.
From this I sought out others in the ED advocacy world, starting with a coffee date with June Alexander – who then encouraged me to work with her and a couple of others to explore the idea of a conference in Australia for families and carers of those with an ED. We approached Butterfly Foundation and the Australian and New Zealand Academy of Eating Disorders to partner with FEAST in running an event which eventually happened in Brisbane in May 2013. Not only did we get close to 250 people attending, we managed to get some good media attached to the conference which gave a really strong message about the critical role of families – I was interviewed for ABC national radio which was my first foray into media about EDs.
Since then I have been involved in a range of activities: joined the FEAST board, presenting at regular FBT training sessions on the FBT experience as a carer, planning for the next family and carers conference in May 2015 in Melbourne (www.
athomewitheatingdisorders.com) , recently being employed at the Victorian Centre for Excellence in Eating Disorders as a Carer Consultant and developing a series of parent education/support groups for families in Stage 1 of FBT at the Royal Children’s Hospital. Along the way I have been used to tell our story in media interviews on television as part of Eating Disorder Awareness Week in Australia. I make a real effort to attend our ANZAED conferences to network with ED clinicians and advocate the role of families – and take up the opportunity to be involved in whatever ED events are happening. Just last week I was asked to tell our family story at the launch of our state’s first ever ED strategy.
I define advocacy as being a part of change for the better. There is loud more confrontational advocacy which is critical to shake up the establishment and get issues on the table. I am more comfortable with what I call guerrilla advocacy – being around, dropping ideas into the heads of the influencers in our sector, rationally arguing the case but also listening to their side, developing mutually respectful relationships with those that matter, establishing a credible voice etc. I have found the overwhelming majority of people I have met in our ED world in Australia to be operating from a place of good will and wanting the best for those with an ED. We have significant service gaps but increasingly we are seeing fairly rapid changes to services, especially in the under 18 services. I think this needs to be encouraged and supported, as well as continuing to argue for improved services.
I would like to see more families be comfortable with engaging with the media- whether we like it or not, this is where we can have a huge impact – presenting our stories, what EDs really look like, what we as families can do to help and that recovery is a real expectation. I know my perception prior to this was media stories I had seen of people with anorexia looking horrendous, living horrible lives and never recovering.
3. What change do you hope to affect?
My key aims are:
Get message out there that EDS are not caused by low body image or wanting to be thin – they are a complex mix of personality traits, brain malfunctions, loss of weight for whatever reason and many other factors that all seem to coalesce in our children to precipitate an ED.
Getting early diagnosis and prompt intervention. I see GPs as key to this and if they take parent concerns seriously and encourage families with concerns to go back home and require their child to eat a normal meal, they will soon know if there is a serious issue at play or not. I would love parents at this early stage to be given a pack of reading and tips to get them started while waiting for referral into specialist services. So much weight can be lost in those last few weeks.
Involvement of families to be front and centre of all treatments whether child, adolescent or adult – as I said the other day at the launch of our state ED strategy: we are committed, we are free and we are there 24/7. Not only are we critical in treatment such as FBT, we can provide a safe environment 24/7 and can be the first people to pick up early signs of relapse.
Families need peer support, not only to provide a sense that they are not alone, but experienced parents can provide ideas and knowledge it is very hard to get from clinicians. In addition, on occasion, parents can say to parents what the clinician can’t.
Service development needs to be informed by and involve families/carers input in a real and respectful sense. My latest aim is to see paid carer consultants as part of treatment teams as I feel they will contribute enormously to better outcomes and less traumatised families.
4. What are some of the challenges/frustrations inherent in this type of advocacy?
Time is a particular challenge usually but have been able to do a lot more since I broke my leg earlier this year and have reduced my usual workload! For me, advocacy can take a number of guises. I am more comfortable with a less confrontational style where I get to know the people and key players involve, develop respectful relationships which enable dialogue where I can make my points and they are heard. I respect the stronger and more outraged style of advocacy as I see this as critical at times to shake the establishment and challenge preconceptions – however, on my journey thus far I have found most clinicians and other advocates operating from a place of good intent, even if I don’t agree with their position. I do get outraged at some of the messaging about loving your body and where private services appear to be promising cures with no evidence – and am not sure what to do especially about the second. I think I am still finding my way with this.
5. Top 5 things you would share with a family facing a new diagnosis?
Only having five things is a challenge but here are my top 5 –
Trust your instinct – learn to listen to it and act on it when you think something is squirrelly, when you think your child is ready to move to the next stage of independence etc
Make an informed decision on how public you are going to be- there are pros and cons to both approaches but people often go the ‘keep it secret’ mode without thinking it through – your ability to create a safe wider environment for your child is enhanced by increasing the number of informed people available to support your child and you.
For those being treated with FBT, parental control is something you absolutely need to find within yourself and is the thing that makes the positive difference between FBT and other treatments. Fake it till you make it with this one!
You need to be stronger than the ED voice in your child’s head.
Finally – let go of all the usual cultural timelines and expectations for the time being. Health comes first and feeling compelled to complete final years of schools, particular exams, head off to university with everyone else, go to school, even perform in plays etc, can make you compromise the stand you need to take when requiring all the behaviours needed for a full recovery. Don’t let these events make you feel you have to compromise the ultimate goal- full recovery. if you can do this- ironically your child will get back on track with these timelines quicker.