Friday 14 January 2011

Anorexia from a parent's perspective - what helped most?

When anorexia first became obvious in our lives, I knew NOTHING about this horrible mental illness. So, back in Autumn 2009 I began the biggest learning curve of my life. But if you're a parent of a new anorexia sufferer who's arrived at this stage, where do you start?

Below I list the 4 steps which, looking back, I believe could have 'fast-tracked' our own learning curve of anorexia and even accelerated our own family-based support for Ben at this early stage. But first, here's how it was for us...

We started with a visit to our GP, however they seemed to have little experience or knowledge of anorexia. Also, because Ben's BMI wasn't particularly low at the time, the GP didn't seem to think it was much of a problem. Although the alarm bells were ringing loud and clear in my head, they weren't in our GP's head. They should have been.

After fobbing us off on several occasions, I had to put my foot down and get our GP to refer us to CAMHS (the UK NHS-run Child and Adolescent Mental Health Services). Note: the only reason I discovered that CAMHS existed was because the school nurse told me about it, not the GP!

Naively I assumed we'd get an appointment with CAMHS virtually straight away. In practice, we had to go through various administrative stages (letters to and fro... signing this and that...) before we were offered our first appointment... on some unspecified date which could be as early as... Easter 2010!!!

Horror! Panic! What on earth were we to do between now and then? Ben was deteriorating at a rate of knots, physically and mentally, and we had ZERO support, practically no knowledge of anorexia and no immediate treatment planned out.

I checked our private health insurance which offered £500-worth of psychiatric cover. Then I found out that a first appointment with a private psychiatrist could cost £250-plus - so that was half of that gone already.

This period of the anorexia is particularly murky as we spent our money on private 'stop-gap' treatment (psychiatric assessment followed by some CBT sessions with a CBT specialilst). Looking back, none of these sessions were any use and the private psychiatrist was positively scary!

Naively I assumed it might only take a finite series of, say, 12 appointments and - hey presto! - Ben would be cured. Just like taking medication for a physical illness.

Meanwhile I was in a state of complete and utter panic. Worse, nothing I said or did seemed to make any difference to Ben's thought processes, weight loss or his behavior around food. I couldn't understand why he seemed unable to 'get it' - that he didn't need to lose weight to be popular and that the fact that he was getting more and more reclusive and depressed certainly wasn't going to work in his favor in the peer popularity stakes. I almost expected Ben to suddenly 'get it' and say: "OK, I'll start eating again" and everything would be fine.

But unfortunately anorexia doesn't work like that. You need proper treatment from professionals highly skilled in the latest thinking on anorexia and other eating disorders.

The bad news is that if you live in the UK there is little you can do about the NHS / CAMHS waiting list. But what you can do is keep reminding them that you are there and things are getting increasingly urgent. Don't do nothing.

As I said above, our personal experience of private treatment was useless, but I do know parents who have found it very useful, even swapping free CAMHS treatment for private treatment in some cases.

I also know parents that have 'gone it alone' with the support of a very understanding, supportive and knowledgeable GP.

But, even so, where do you start if anorexia and eating disorders are about as alien to you as life on Mars? Is there a way to 'fast-track' the learning curve? (Sorry, but as a parent of an anorexia sufferer you have no choice but to go through this learning curve...)

OK, here's my advice...

1. First see your GP and don't let them fob you off with weeks of 'Go away, eat more and come back next week'. If your gut feeling says your son or daughter is spiraling into anorexia or another eating disorder, trust your instinct. If in doubt and you need good, sound, speedy advice on what to do next, post up a message on the FEAST forum mentioned in point 3 below.

2. Next, get hold of 2 very good books and read them from cover to cover - then read them again. Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method is by Janet Treasure (et al) - one of the most respected eating disorder experts in the UK. Help Your Teenager Beat an Eating Disorder is by James Lock and Daniel Le Grange, two leading US experts on anorexia and other eating disorders. As a starting point, these are probably the only books you will need and are recommended by many parents of teenagers with anorexia and other eating disorders.

3. Join FEAST and their online forum Around The Dinner (Here's what FEAST says about their (free) support>>) Personally FEAST and Around The Dinner Table have been lifelines in our family's battle with anorexia. Through the forum I have met some incredibly supportive parents, across the world. We even keep in touch on Facebook and I've met up with a number of the UK-based parents. Just talking to someone else who is going through the same or similar experience as you is incredibly empowering. Many of these parents' teenagers have now recovered or nearly recovered which makes it even more helpful.

4. Read blogs like this one. Also, Laura (Collins) Lyster-Mensh of FEAST (above) has a brilliant blog which includes a list of other parent-related anorexia / eating disorder blogs which she recommends. Another good blog is EdBites by a recovering anorexic.

All of the above is an excellent starting point if you want to 'fast-track' your anorexia recovery learning curve without spending a fortune on books you don't need or which may be out of date - and without spending days trawling around the Internet for conflicting or out-of-date advice.

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