Friday 22 March 2013

There MUST BE a united front against the eating disorder

One thing that is coming across very clearly, and it's something that seems so very, very obvious - so obvious it screams out at you - is that the entire treatment team and the parents need to present a one hundred per cent united front against the eating disorder. We parents already know this and, thankfully, so do some treatment teams. But, again, it's a postcode lottery. We don't know this until we find ourselves in front of the CAMHS team (or whatever) we've been allocated. Here in the UK we don't seem to get any choice.

It is vital that we all need to appear to be on the same page, every time we meet. Because the moment the eating disorder detects any discord or dissent in the ranks it will zoom and and exploit it. And you've lost the major advantage you've worked so hard to gain.

And once you've lost this major advantage it's not simply a case of making things a little harder for everyone, it can often f*ck things up completely. Big style and for a hell of a long time. When I say a hell of a long time it can be weeks, months or even years... or even the rest of the young person's life.

Having talked to 13 families about their experiences, I wonder: Are treatment teams aware of this fact?

It's not all bad news, though.Where families and the treatment team are working together in complete unity against the eating disorder, the eating disorder doesn't stand a chance.

Obviously it's not that simple and obviously I've only talked to a tiny proportion of UK families. And obviously, even with the most amazing treatment team in the universe, the eating disorder is going to fight tooth and nail to regain the upper hand, and doubtless it sometimes does - and recovery can take a heck of a long time. But in my mind, when there's a consistently united front, the eating disorder has essentially lost the fight. It is weakened.

On the other hand it only takes a little bit of discord, a slight disagreement, the odd thoughtless "throwaway" comment or downright triangulation... Or the parents not being listened to, not taken seriously or being seriously undermined in their sterling efforts to free their child from this hellish illness... and the eating disorder detects this.


And the moment it does, you're onto a loser.

Because it really is like a battle. Once the enemy detects a weakness they'll exploit it.

But it's not just this, it's the fact that you, as a parent, are with your child 24/7 and the clinicians see your child for 60 minutes a week or even less. Some families are fortunate enough to have more sessions, some as many as three sessions a week. But you are still with your child for the vast majority of the time, especially if you've taken them out of school school and they're not sleeping. Many parents are having to spend the entire night with their child.

So it is obvious that parents have to be the child's primary clinician as well as their carer. It is essential that they are an extension of what is going on in those 60 minutes that's spent with CAMHS or whoever.

And to do this, parents need to know what they should be doing. Not simply to be handed a diet sheet and be expected to make their child eat. After all, if they were able to feed their child then their child wouldn't be in front of the treatment team, would they? Parents need to be shown exactly what to do by clinicians who realise that parents are an invaluable and vital part of the mix. Parents can be their allies, not an annoying appendage.

Also, the moment they realised what they were dealing with, every single one of "my" families crammed up on eating disorders. They read books, they scoured the net, they talked to helplines and anyone else they could find. In a very short space of time these families became experts on eating disorders. Dare I say it, some families appear to know more than the clinicians? Especially clinicians that are multi-disciplinary, and frequently with non-mental health professionals for example A&E nurses and doctors, and some GPs.

So we aren't just "ignorant parents". We are actually pretty well clued up on eating disorders, driven by the primeval desire to save our child's life by whatever means. I always say that I never studied as hard for my university degree as I studied to find out about my son's eating disorder. And, unlike a three year degree, I had to fast-track my way through this complicated learning curve because the longer it took, the longer my child was at risk.

And, while you're waiting for treatment in those instances where the professionals don't believe the problem is as serious as it is, you - the parent - are the only one available to "treat" your child. You can't just sit there and let them fade away. Which brings me round to the question: Why aren't some clinicians recognising the eating disorder for the serious, life-threatening illness that it is?

But we parents need support. And we need to join up with the treatment team to form well-oiled machines that steamroller the eating disorder out of our children. And because it's one hell of a slog, 24 hours a day, 7 days a week, we also need serious emotional support which often isn't happening.Thank God for places like the Around  The Dinner Table Forum. All "my" families tell me it was - and is - a lifesaver.

Certainly some parents have had fantastic support from the services they've been working with and these excellent places should be viewed as benchmarks for other NHS services.

Oh, and don't go on at me about funding. If all of this was done properly the NHS would save money in the long run. And meanwhile lives would be saved, too.

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