Very frustrating CAMHS meeting

[cmuir]

Hi

 

My son has already been diagnosed with AS 4.5 years ago, and more recently with dysgraphia and dyspraxia - all by a highly respected ASD specialist in Scotland. Over the past few years CAMHS have raised the possibility of ADD and so R is currently being assessed. However, we had first meeting with another specialist (turns out he too is regarded as an ASD specialist). I was dismayed to find that this man was msking rather a lot of assumptions/statements/etc which I wasn't in agreement with over the space on one hour - bearing in mind for most of the hour R was extremely aggressive and abusive towards everyone and kept trying going AWOL. My concern, which I voiced, is that surely an specialist cannot make a judgement i.e. relaxed before making any judgements. Problem is that this guy appeared to be querying R's AS diagnosis. I'm worried sick - I've no doubt that AS is what R has (and nor does anyone else). Problem is that his highly respected consultant (Professor) is on leave and cannot be present at the meeting. Don't get me wrong, I don't want R diagnosed with something he doesn't have, however, here we are for a third time (at the instigation of CAMHS), R being assessed for ADD. I simply want to protect (given he gets extremely anxious/aggressive/etc) R as he's particularly fragile at the moment. I just want to ensure they make an informed decision after having spoken to a number of people (including his HT!!!) before putting this to rest. Really feel this guy was sitting back, not listening to anything I had so say, and made a host of snap judgements. He became noticeably displeased when I queried whether he'd truly seen all. I'm worried this guy could be quite damaging in the sense that he could potentially change/remove R's diagnosis - he was making statements that R's behaviour is so bad because it's been allowed to continue (something I disputed at the time, since myself and the school work very hard to discpline R appropriately). I tried to explain all of this, but he stated he wanted to call a halt to the meeting, at which point I became upset (tearful). The main even had the neck to say that it was nice to meet me again!!! I was able to continue and explained to the charge nurse, psychiatrist again stated he wanted to end meeting and I advised as I'd been asked a question by CN I would continue and answer question without holding him back. Very frustrating and very upsetting. I'm probably going to be portrayed as some kind of neurotic weak mother (in honesty, I'm more concerned about the outcome for R than concerned what's thought about me). Meeting takes place on the 24th and so it's going to be a long wait!

 

Caroline.

[dm2010]

Can you play for time and delay the meeting until you professor gets back off leave ?

[Kathryn]

Caroline,

 

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Agree with the above: when does your usual consultant get back? Can you or your son just be "ill" on the 24th?

 

K x

[cmuir]

Hi

 

Thanks.

 

Unfortunately the meeting on the 24th is for professionals only. Professor X will be two days back from leave and so cannot attend the meeting. I have however left a message to speak with her - her secretary is very good and has advised that at the very least Professor X will be able to speak with the team concerned and reinforce there's no doubt about the AS diagnosis, etc etc. That's something anyway. Very tricky given it comes to two ASD professionals which will have to sort it out!

 

C.

[Parly]

Hi

 

My son has already been diagnosed with AS 4.5 years ago, and more recently with dysgraphia and dyspraxia - all by a highly respected ASD specialist in Scotland. Over the past few years CAMHS have raised the possibility of ADD and so R is currently being assessed. However, we had first meeting with another specialist (turns out he too is regarded as an ASD specialist). I was dismayed to find that this man was msking rather a lot of assumptions/statements/etc which I wasn't in agreement with over the space on one hour - bearing in mind for most of the hour R was extremely aggressive and abusive towards everyone and kept trying going AWOL. My concern, which I voiced, is that surely an specialist cannot make a judgement i.e. relaxed before making any judgements. Problem is that this guy appeared to be querying R's AS diagnosis. I'm worried sick - I've no doubt that AS is what R has (and nor does anyone else). Problem is that his highly respected consultant (Professor) is on leave and cannot be present at the meeting. Don't get me wrong, I don't want R diagnosed with something he doesn't have, however, here we are for a third time (at the instigation of CAMHS), R being assessed for ADD. I simply want to protect (given he gets extremely anxious/aggressive/etc) R as he's particularly fragile at the moment. I just want to ensure they make an informed decision after having spoken to a number of people (including his HT!!!) before putting this to rest. Really feel this guy was sitting back, not listening to anything I had so say, and made a host of snap judgements. He became noticeably displeased when I queried whether he'd truly seen all. I'm worried this guy could be quite damaging in the sense that he could potentially change/remove R's diagnosis - he was making statements that R's behaviour is so bad because it's been allowed to continue (something I disputed at the time, since myself and the school work very hard to discpline R appropriately). I tried to explain all of this, but he stated he wanted to call a halt to the meeting, at which point I became upset (tearful). The main even had the neck to say that it was nice to meet me again!!! I was able to continue and explained to the charge nurse, psychiatrist again stated he wanted to end meeting and I advised as I'd been asked a question by CN I would continue and answer question without holding him back. Very frustrating and very upsetting. I'm probably going to be portrayed as some kind of neurotic weak mother (in honesty, I'm more concerned about the outcome for R than concerned what's thought about me). Meeting takes place on the 24th and so it's going to be a long wait!

 

Caroline.

Hi Caroline – I’m aware the date for your arranged meeting has long gone and just wondered how it went?

 

I’ve also had similar issues with CAMHS although in fairness, had the same problems with other professionals during assessment. To date, CAMHS were definitely the worst for the way they approached things and their tendency to make too many assumptions. I wasn’t entirely taken with the way they completed their assessment to be honest and like you, left the meeting feeling that was 90 mins of my life I'll never get back. It was pointless.

 

Like you, I find I sometimes become so frustrated that I’m on the verge of tears and know if I start trying to argue my case, I’ll end up bawling with my Son sat right there – the last thing I want. The CAMHS Practitioner gave me the impression she thought I might be a neurotic Mum that just wants her kids wrapping in cotton wool etc, and I think she’d made up her mind before even setting eyes on me.

 

What I tend to do is write down / type the points I need to make and emphasise key areas I think have been overlooked and need further consideration. I also point out the reasons for putting everything down on paper and I’m very upfront and honest in saying that I find it hard work to physically talk about some things and I want to avoid an emotional outburst when put on the spot. Plus, it helps if they can keep a copy and refer to it when they’re compiling reports and it allows you to get everything down without forgetting, being cut short or interrupted or just not saying what you want to because it’s upsetting.

 

Hope all went well (if it went ahead) and that if you did manage to put it off a while longer, you’re arming yourself with all the necessary ammo as we speak!

 

Parly