Tuesday 16 May 2017

Parent support: what helped us and what might help you

The ATDT forum
I've been thinking about the support that was available for parents when my son, Ben, was sick with anorexia - because I, like most parents, was desperate for help even if that help was just a sofa, a cuppa and a friendly ear. I really hope that there is more support these days because parents really shouldn't have to go through this distressing, confusing and life-changing experience alone.

It's approximately 8 years (spring / summer 2009) since Ben first began to display signs that I now know were relatively typical of a male descending into an eating disorder: anorexia, in his case.

At the time we completely missed the signs because we didn't know that boys get eating disorders. Subjects like anorexia were about as far off our radar as you can get. In fact it was my Mother-in-Law and my sister who confirmed that my worries could be the sign of an eating disorder. My Mother-in-Law lives some distance away so it was really my sister who provided the most support as far as our family was concerned. I didn't want to worry my elderly parents, so I only told them what needed to be said at the time.

So, by the Autumn of 2009, I had my sister who was always ready to provide a shoulder to cry on.

I had Shirley, the school nurse ('Sheila' in my book) who was the person who first suggested I ask for a referral to CAMHS (Child & Adolescent Mental Health Services) and who went to provide support that went way, way, way over and above what she might be required to do as a school nurse. Support for me, as well as for Ben. In fact it makes me cry when I recall how truly wonderful she was (and still is!)

And of course there was Ben's dad who was as worried (and as ignorant of eating disorders) as I was.

I can't remember how but I also discovered a UK charity called ABC (Anorexia & Bulimia Care). I called them and they were fantastic. I remember talking to another parent who'd been through an almost carbon-copy experience to what I was going through. She also sent me a pack of free information by post which was really helpful.

Unfortunately the UK eating disorder charity B-eat wasn't as responsive. The impression I got at the time was that they only supported the eating disorder sufferer, not the parents, although I am sure this wasn't the case; I think I just spoke to a particularly unhelpful person.

At some point along the line I learned about a parent support group at a local NHS eating disorders centre. The only problem - and it was a BIG problem for me - was that they met between 6 and 7pm. My husband was working away, so there was no way I could make 6pm - 6pm was when we had our evening meal, as I imagine it was for many other parents, too. And it was imperative that I was there to ensure Ben ate some food. It always seemed a crazy time to have a meeting for parents of young people with eating disorders! So, unfortunately, that was a non-starter.

Then, later on in the process, I met my wonderful friend, Sue. Sue, who had breast cancer yet insisted on being an incredible support. Again, I feel teary when I think about Sue (who tragically passed away almost exactly five years ago).

In March 2010 I discovered the Around The Dinner Table Forum and FEAST network which supports parents of young people with eating disorders and which was a true lifesaver for me.

But, apart from the parent group that met between 6 and 7pm, I wasn't offered any support from our NHS. The GPs weren't interested. CAMHS only offered what it termed 'Parenting Sessions' with the CAMHS nurse while Ben had a one-to-one session with the psychiatrist. These sessions just made me feel more helpless as well as a little bit to blame - the 'anxious parent' and all that... And no-one seemed interested in learning about the ATDT parents' network which is kind of odd seeing as how it's so vital that parents find support in order to have the strength to support their child through this punishingly difficult time.

So if you're a parent reading this post, what would I recommend in terms of support?

Always, always, always the ATDT Forum and its parent site FEAST. I feel so very strongly about this that I almost want to frog-march parents into this network of incredible people - parents just like us, across the world, who have 'been there, got through it' yet who willingly volunteer their time to be there for other parents.

If you live in the UK then ABC (Anorexia & Bulimia Care) is also well worth a call, as is B-eat. In the States, there's the National Eating Disorders Association (NEDA). And wherever you are, the famous Kartini Clinic has a wealth of information plus a fabulous eating disorders blog. Dr Sarah Ravin's blog is well worth a read, too.

On top of this there are some superb books on evidence-based treatment for eating disorders; you can find an extensive list of resources by following this link on the FEAST website.

I hope this helps!

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