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Refused To Assess


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#1 Windy willows

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Posted 18 September 2014 - 12:25 PM

Hi all,

 

I'm trying to get some assessments done for my youngest son who's 13 and half.

 

I guess I should start at the beginning really. Sorry this is going to be a long post.

 

Just a bit of background, my ex and I split up when the kids were 2 and half and 9 months.

 

My eldest son (now 15 and half) attends a special school and has Aspergers. It was apparent that he had issues the day he started nursery school, and from that day I worked with the school to give constant methods of managing his behaviour.

 

CAMHS refused to assess, for years blaming my ex-husband and the then ongoing court proceedings over contact.

After 3 years or so of trying to get assessment, I was given an appointment where I was told my ex-husband must be present or they would do nothing.

 

Between that time and the next appointment various assessments forms were sent to the (main-stream) school, myself and ex husband. At the next appointment these forms (for ADHD and autism (but not the connor's test)) were looked at. This appointment lasted less than an hour, and in that time, despite the consistancies between mine and the school's forms,which clearly showed ADHD and autism were present, because my ex (who said there were no issues, it was all my fault as I was a bad mother) said he experienced none of those issues, they said he didn't have ADHD or ASD. In this appointment eldest was present, the woman didn't even talk to him. They suggested cognitive assessments. These assessments were supposed to take no more than 2 one hour sessions.... they took my eldest over 14 weeks of 1 hour sessions to complete.

 

When we had a final meeting with them, they said there was nothing more they could do, the assessment results showed nothing. My ex piped up and said that there had been a lot of arguments when eldest was younger than 1. CAMHS then said oh it's that that's caused it. Goodbye.

 

I later received a letter saying he had "neuro developmental abnormalities" (uh isn't that autism?!) and mentioned nothing about what they had said in the appointments.

 

This was in total contradiction to everything that the various therapists at the special schools all said, ie that he is Aspie and that CAMHS should be offering him play therapy. It was around this time that eldest was permanently excluded from school and sent to a PRU (where he stayed for 2 years, until he was given a place at a special primary school).

 

Anyway after all that, felt it was better to just not bother with CAMHS and let the schools do what they were doing anyway. A diagnosis didn't seem to be of much use really. He has thrived in the school he is now at, without the help of CAMHS, and is now in year 11.

 

Less than a year after CAMHS had done all this, my ex husband attacked my eldest, he tried to strangle him after he stood up for his brother. He has not seen the kids since, so he hasn't seen them for the past 7 years now. Social serivces didn't even bother investigating the incident, nobody including CAMHS had cared about my warnings that he was violent up until then, and nobody except the school took it seriously.

 

In the mean time eldest has thrived and done really well.

 

It came to my attention that prehaps during all the stress and agro to get eldest assessed that youngest had been overlooked.

 

I had worked with youngest's school teachers to manage his behaviour and learning difficulties, however the school had such a high rate of teacher turn over; when one spotted the problems and start the ball rolling, they'd then leave and we'd have to start all over again with the next teacher. (In his last year at school before home ed, in the 3 months from september to jan he had had THREE class teachers come and go!) This came to a head when he was in year 5.

 

The head was going to exclude him for "non-conformity" as he would hide under tables and refuse to come out.  In that meeting she said that "he was working 2 years behind everyone else, he was not coping in year 5, would not cope in year 6, would not cope in secondary school, and he wouldn't cope in a special school as he was too sensitive". I asked her what was I supposed to do then, she just shrugged her shoulders. I asked her about his dsylexia assement and she said he had never been assessed for that and they had no intent of doing any assessments of him.

 

(Up til that poiint they had said he had dsyleixa (and been assessed for it), had been seen by an Ed psych once but only in a classsroom setting briefly while they were looking at sveral other children (that report said that he showed several extermely weak areas but the summary said he had no learning difflucilties at all (so a total contradiction there), the only person who had spent any time with him was a lady from a learning diffcuilites charity who did one to one sessions with kids who struggled, she said she thought he was ASD; though nothing further was done as he was being excluded shortly after she said that).

 

I had been looking at home ecducation around this time, but that meeting with the head really galvanised me into making the decision, I mean I couldn't do worse than the school really.

 

We have not looked back since (we left school in Jan 2011). Youngest has really come on, however there are still some issues which are glaringly obvious and so at the beginning of this year I went to the GPs to get a referal.

 

After 9 months of waiting and not hearing anything, while at the docs for something else asked him if he'd heard back from CAMHS. He hadn't, but gave me their contact details so I could chase it up.

 

(During this appointment it came to light that CAMHS had in fact given my eldest an official diagnosis of AS all those years ago, why they hadn't just said so I guess I'll never know.)

 

This brings us to this week, it seemed that nobody outside CAMHS had received their response to the initial referal. Having phoned them, CAMHs got back to me quickly and said they had refused to assess (their letter was less than 80 words, to my over 700), because they don't do ASD or dsylexia (well ok I accept they don't do dsylexia but as for the rest...).

 

I replied and had a phone call from the region manager this morning.

 

She said CAMHS no longer deal with ASD or single mental health issues. There had been a policy change earlier this year. She told me I would have to go private to get assessments done. Their excuses for not assessing ranged from it's the GPs fault, your son wants assessing for dsylexia, ASD isn't a mental health issue, anxiety isn't a mental health issue, nor is soiling himself a mental health issue.

 

I am due to go back to the GP tomorrow to bring him up to speed on all this.

 

Frankly I'm just too tired to have go through all that again. It is so stressful dealing with "computer says no", I just don't think I can do it again. Youngest does need assessing but I don't know where to go. I can't afford private assessments, but the alternative is unbareably frustratingly stressful!



#2 CarerQuie

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Posted 18 September 2014 - 01:37 PM

Ask for referral to the Paediatrician. They might have an alternative route at their disposal. My son's assessment wasn't via CAMHS. xx



#3 Snickas

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Posted 18 September 2014 - 05:42 PM

Your GP should be able to refer you to child developement centre to see a community paediatrician.

And yeah, CAHMs critera has drastically changed in the past 12mths and have had massive cutbacks, leaving them mainly taking on children with severe issues ie suicidal tendencies, severe anxieties, etc. Disgusting I know because, our children's difficulties CAN escalate very quickly to such desperate Heartwrenching issues :( if the had therapies early enough - it would not escalate to such severe levels :(
And yes they are turning away children with long term, life changing conditions because the therapies would be long term cases :(
It's ludicrous on the whole.

ANYWAY, all 3 of my ASD children were diagnosed via Community Paedictrician.

Hope you get your referrals ASAP.

#4 apricot

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Posted 19 September 2014 - 09:45 AM

Same here. DS diagnosed via Community Paediatrician. CAMHS don't do ASD!



#5 Windy willows

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Posted 24 October 2014 - 06:36 PM

Thanks for the help.

My local CAMHS were not pleasant to deal with, when I complained they said it was the GPs fault the referral was declined and it was also my fault for not requesting specific assessments (ie using their psych lingo!). I've escalated it as a full complaint now.

Though just a few days after this the local CAMHS was closed permanently. No notice to users, just a note on the door saying sorry we are now closed for good!! Well no wonder they turned us away! They must have known it was coming.

I still have to go back to the GP and tell him that they blame him. Last time I saw him I asked for a referral to a paediatrician but he said it no longer works that way and he doubted we would be able to go down that route. (PS we don't have any local child development centres near here).

Frankly the stress of it all is too much. I spent years going round and round in circles trying to get help for my eldest. So i'm extremely reluctant to go through this all again. Only this time around it seems it will be even harder! He turns 14 in March and I was told that once he's 16 no help will be available! I can't see us getting anywhere in 2 years... it took 6 years for my eldest!


Sorry for the quick reply above, had to rush off and drop eldest at atc.

 

From where we are now nobody wants to know. I've contacted ASD charities and organisations, both local and national, they pretty much say the same thing... they can't help.

I've contacted private psychs and they will assess but won't diagnose, saying an ASD diagnosis can only given by a multi disciplinary team now.

Where ever I turn I am told go away, we can't help or go private. Nobody will help! The school wouldn't help, CAMHS won't help, ASD organisations won't help!!

The only option I have left is to go back to the GP and explain that CAMHS blame him and want him to make yet another referral to them once he has done some "assessments" (though CAMHS would not tell me what assessments they want the GP to do!.

Having talked to other families with ASD kids they are having similar problems and are coming up against the same thing that only those with enough money to pay can get an ASD diagnosis now.

The whole thing is a sick joke.



#6 Windy willows

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Posted 07 September 2015 - 05:57 PM

Thought I would update.

 

After banging my head against a brick wall with CAMHS, I made a second complaint through PALS, and after a meeting with the regional NHS managers things actually started to happen, albeit slowly still.

 

Anyway after all that my youngest son was assessed in July and received a formal ASD diagnosis (yes from CAMHS) in late August! So we got there in there end! And hopefully by kicking up a stink with my complaints I have managed to change the system a little so future families may find it a little smoother, here's hoping.


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#7 Kadenza

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Posted 21 September 2015 - 09:24 AM

Well done for keeping going. If only these people would listen to us parents in the first place...!




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