by Melanie Stevenson, F.E.A.S.T. Parent Volunteer
They say there is a silver lining to every cloud. For me, there was a very bright lining indeed to the huge black cloud cast by Covid-19: I was able to attend the FEAST of Knowledge 2020 event, because the only way to go ahead with it was to make it ‘virtual’. I have never attended a past event because of the distance and the costs involved, and so I signed up, delighted with the opportunity to purchase my virtual attendance for such a modest fee.
I am lucky in that my daughter is now fully recovered from anorexia nervosa after an eleven-year battle. I have gained a lot of knowledge and experience of eating disorders during those years. However, in terms of my advocacy and the support I can offer to other parents, I feel it is important that I keep up with current developments, especially treatment interventions, so I was particularly keen to hear the presentations on four treatments available. The one treatment with which I was not familiar is Temperament-Based Therapy with Supports (TBT-S).
In the UK, the move to adult services at the age of 18 invariably means that the patient starts a new approach in which the family is side-lined, (unless more enlightened clinicians make an effort to include them) and it is an easy point at which patients can move backwards when they are expected to start fighting the illness on their own. Stephanie Knatz-Peck’s clear explanation of how TBT-S seeks to work with the personality of the patient and encourages the patient to use the supports available, (usually a family member but it can be a friend), is an exciting development in treatment options. I expect it will take time before the clinical world will be open to it, but it seems an infinitely sensible way to move from FBT, and could facilitate the transfer between services so much more successfully because it is realistic. Other options are available, such as dietary or group support, but when a young person is still so vulnerable, why would clinicians not find ways to include the very people who love that patient the most and will do what it takes to support them to recovery? I will be campaigning in my home country of Scotland for clinicians to be educated in and to start using this approach in an adult setting.
The presentation by Lucene Wisniewski and Laura Lyster-Mensh on distress tolerance and developing the skills required to manage the behaviours which children with eating disorders present will be hugely helpful to anyone new to these illnesses, and who will need to be prepared for the proverbial marathon, not sprint, which the recovery journey involves.
My daughter is an only child, so I have not yet viewed the two presentations on helping siblings, but I am aware that they are both very moving; and again, essential viewing for thinking about those members of the family whose needs it can be very difficult to meet when the child with an eating disorder needs 24-hour care and supervision.
The other presentation which I was keen to see was Clinical Psychologist Rachel Bachner-Melman’s talk about eating disorders complicated by other diagnoses. Her comment at the beginning was striking: it is rare to see an eating disorder present without any other condition such as depression or anxiety disorders such as OCD so parents need to consider what other supports and therapies their child may need. Depression may lift with nutrition but it is not uncommon for a family member to suffer from depression, for example, so there may be a genetic factor involved, meaning that other treatments may be required. Rachel impressed me with her case studies but mainly because she understands that clinicians need to treat the whole person and not just the eating disorder or the other mental health condition (comorbid). This is particularly relevant to what is happening in the UK at the moment. An adult with an eating disorder can only be under eating disorders services, or general mental health services – but not both (editor’s note–this is not just a UK based problem) Anyone can see that this arrangement is setting the patient up to fail because he or she needs input on all levels, not just an either/or intervention. We still have a long way to go in improving approaches, but it is encouraging to know that there are clinicians such as Rachel who understand what is needed.
I wish I could mention every other speaker but I need to keep this short. Bronwen’s story of hope was hugely moving – but I want to end with Shannon Calvert’s story. Shannon is a beautiful young lady who recovered from anorexia nervosa after an illness duration of more than thirty years. Her words rang loud and true for me and I offer them as a beacon to shine in the dark for every other parent who is struggling at present. She testified to the love of her mother and how her mother never gave up hope, and stressed just how significant this love and hope were for her.
FEAST of Knowledge 2020 was such a wonderful experience, a reflection of F.E.A.S.T. Executive Director Laura Lyster-Mensh’s drive, compassion and determination in developing F.E.A.S.T initially, and of her never-ending demand for improvement in eating disorders treatment and services worldwide. And it was heart-warming to witness so many clinicians who support and share her vision.