Tuesday, 20 September 2011

Why did it take 22 weeks from the first GP visit to our first CAMHS appointment?

In the world of spiraling rapidly downhill with anorexia, 22 weeks is a heck of a long time. A heck of a lot can happen and the chasm can be a heck of a lot deeper than it was several months before. So, in theory, there's a heck of a lot further to climb back than if the issue had been addressed urgently when we first took Ben to the GP in September 2009. And meanwhile we, who were completely ignorant about anything to do with eating disorders, hadn't a clue what to do or even if we could do anything to prevent our son jet-propelling himself into a physical and emotional hell.

The more I think about it, the madder I get.

Here in the UK everyone, except the super-wealthy that can afford it, is forced to opt for state-funded NHS treatment. Even though some of us do have medical insurance (we did at the time), it often excludes mental health issues. Or (like ours) it covers you for something like a measly £500 a year. This wouldn't even buy you three sessions with many UK-based private psychiatric professionals.

And, being the NHS, there is usually a lengthy waiting list. Unless you're fast-tracked through the system because the GP believes you have something potentially life-threatening.

Hang on a minute... Don't eating disorders have the highest mortality rate of all psychiatric illnesses? Didn't I read somewhere that one in five people actually die as a result of their eating disorder?

Don't these facts alone qualify it for a teeny weeny bit of an emergency in a medical professional's eyes?

I don't doubt that in some areas across the UK and the world, this is indeed the case. Teenagers are whisked off to hospital or treatment urgently. And they do say that early intervention can lead to early recovery.

But we had a treble problem.

Firstly, our local NHS waiting list for eating disorder treatment tends to be around 18-20 weeks. Not from the first time you take your child to the GP and not even from the first time you persuade your GP to refer your child to this service (called CAMHS here in the UK). The waiting time doesn't even start once CAMHS acknowledges receipt of the referral. It starts once they write back to you to tell you that, yes, you've been accepted for the waiting list. With us, this letter came in late November 2009, over 2 months from our first GP visit.

I estimated we wouldn't be starting treatment until Easter.

Secondly, Ben's BMI wasn't dangerously low. Sure, we as parents were painfully aware that he'd lost one quarter of his body weight in three months, but the GP only had our word for it. Here in the UK, you see, children don't undergo regular medical / weight checks like they do in the States. If it had then maybe our  GP would have heard the alarm bells ringing out loud and clear, and acted then and there. Especially as I was describing a 'text-book' case of eating disorder style behaviour, compulsions, rituals and moods.

And thirdly, Ben had the disadvantage of being a boy - and, hey, surely it's girls that get eating disorders, not boys? After all, skinny boys aren't unusual. Skinny girls with all the associated behaviours, etc maybe warrant closer scrutiny, but surely not boys?

Anyway, whatever the reasons why it took so long for Ben to be referred for treatment, the fact remains that it took several return visits to the GP before anything was done.

And even then we were only referred to CAMHS at my insistence.

The GP hadn't even talked to us about what help was available; it was the school nurse that told me all about CAMHS and insisted we get referred.

Meanwhile I had to wait for another GP's appointment to become available. (At our busy local medical practice you're lucky if you can get an appointment the same week, let alone urgently.) Then I had to twist our GP's arm to get Ben referred to CAMHS. I had to make a nuisance of myself to get the referral my gut instincts cried out was essential if we were to put the brakes on this hellish decline.

In late January 2010 we got a letter from CAMHS with our first appointment: 16th February.

Between September when we first visited our GP and the arrival of that letter our family had been living in hell, watching our son's rapid mental and physical decline yet powerless to do anything about it (after we'd spent a shed-load of money on private 'stop gap' treatment which turned out to be a waste of time).

Then, shortly after we received that letter, Ben was rushed into hospital with a dangerously low pulse of 29 BPM (described on another post).

The next day I fought tooth and nail to get him an earlier CAMHS appointment. And I succeeded. By the end of the week, 22 weeks since I first took Ben to the GP, he was sitting in front of a couple of eating disorder professionals and treatment had finally begun.


  1. We took our daughter to the GP when she was still above 50 centile but - perhaps because we informed him of the diagnosis and that he needed to make a referral to CAMHS, we only had to wait 5 weeks (!). Of course, once there, the (extremely thin) Nurse therapist gave her lots of ideas for new behaviour ("Do you do hundreds of sit-ups in your room?"), then weighed her while we weren't there, without our permission, then told her her weight was good.... so life rather went downhill from there!

  2. No, no, no!! "...told her her weight was good..." which she would interpret as "...told her she was fat..." I hope things have turned themselves around since then, Red...