Providing care ‘around the table’

Today I am thanking my dear friend, June Alexander, for her passionate advocacy and generous invitation to share my current work in her diary. Late last year I started something new, something energizing, and something I hope will be helpful to our common cause of better outcomes for eating disorder sufferers: my new company, Circum Mensam.

Through the eyes of parents

Are you familiar with the noted autism advocate, Temple Grandin? She has a special skill and empathy with animals that has allowed her to interpret the world of animal care from the point of view of the animals themselves. Well, I like to think I perform a similar function, but I see the world of eating disorder care through the eyes of parents. That point of view isn’t just of what happens in family therapy sessions but includes what we hear on the phone when we call treatment providers, what we hear in the offices of treatment providers, what we read online, and what we take in from the eating disorder advocacy world.

Focus is success for both patient and family

Treatment providers are busy people. They have a lot of responsibilities and are using their training and their experience to help patients. Providers don’t usually have time to learn what goes on in other treatment environments and they are not able to see what happens when families fail to come back, or after discharge. I know these families. I know that parents are holding back much of what they observe and how they feel because their interest is the patient’s success, not helping the providers improve their practice. Parents are scared, too, of feeding myths about parent over-involvement, or of burning bridges that may need to be used again. Parents do not share their experience with other providers with new ones, or new ones with former providers. Most parents are not interested in being right or proving points: they want their son or daughter to be well and they want the whole family to move forward together without “ED” as the centerpiece.

Bringing providers to the collaborative table

At the same time I hear complaints from providers about being misunderstood, misinterpreted, and criticized. I know the burnout, and financial pressures, and frustration with families and health systems that treatment providers deal with every day.

My mission – my passion — with Circum Mensam is to support providers by helping them collaborate with families toward their mutual goal: better treatment results. Providers can often benefit from that special parent point of view, and after many years of knowing families and providers I bring the experience of many to the table.

Inclusion brings benefits for all

Circum Mensam is Latin for “around the table.” I mean that literally and figuratively. We all need to be around the table: facing one another and sharing, just as we would around a meal. When providers get what they need from families, and families get what they need from providers, the one who benefits is the patient. I am seeing a growing movement toward collaboration that is helping patients but also keeping families resilient and providers enabled in better work satisfaction and effectiveness.

So, after many years as a parent advocate I am in this new work able to provide consultation on family-inclusive collaboration, join educational events to teach strategies, review educational materials from a parent viewpoint, and help troubleshoot common situations involving families. I also do private consultations with families as they learn and make decisions around treatment.

‘You can do this!’

I also have a project to allow friends and family, and providers, to send a package of inspiration and information to families at first diagnosis. I have designed the contents to be a bright, encouraging, and informative gift that sends the message: you can do this! They are called Starfish Packages, and anyone can pay for them to be provided to specified families or to those who request one free. I think of what our family would have wanted, and I put it in that box!

Taking advocacy to the next level

All this is new for me. I’m used to being a parent advocate, and have spent many years doing advocacy in the nonprofit charity space. Doing this work as a consultant means being able to devote myself full-time and to get more work done for families. My mission remains the same: improving the lives of those with eating disorders and their families.

My relationships, with fellow advocates and the marvelous researchers and clinicians out there, are my most important resources. I learn from and benefit from the feedback from people like you, June, and the work and advocacy you do so well!

Laura Collins Lyster-Mensh

June Alexander

About June Alexander

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.

All articles by June Alexander

One Response

  1. Karyn Braveheart says:

    Hi, I think what you are doing is a wonderful thing, so needed when parents are at their wits’ end with what to do and the fear of doing the wrong thing, as often to the sufferer it is the wrong thing to try and make normal what is not with high expectations. It takes a long time, but anyone can learn as my son and his girlfriend learnt how to be my support and took on this challenge which so often meant tears all round, fears of ‘Is mum going to die? We are meant to be helping her’, and for me so hard being the mother but feeling like the helpless child. But my family were amazing; they learnt how I thought, they knew what not to say and what was helpful, the little things, like ‘remember to breathe’, as l went off to my day program, feeling scared stiff.
    Engaging in distractions with me after meals, and loving me even when they hated me, my children’s love showed through during my long, life-threatening part of my illness journey. There were many times when I didn’t have any hope apart from what they had learnt to say (often, the opposite to what I said); they stayed strong in their faith that I would get better, and spoke to one another about what a difficult time I was giving them.
    Eating disorders are cruel to the ones we love so I love that you are doing this work and bringing people together to sit around the scary table of eating and being watched long enough to learn that being around the table can also be about sharing, and comfort, and laughter, and being sociable and being who we are with no expectations. A long comment for a passionate subject. All the best in your quest around the table of life worth living xo

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