feeling very weepy,soft and generally down

[jenk1]

Hello, we,ve had a bad week this week,
DH is still off work and has received a letter "inviting him" to go to a meeting tomorrow which he has politely declined, DS home tutor told him the name of the school that we discussed in last weeks meeting and that he would be going there, none of us know if he will as they havent replied back to the LEA yet and this was wrong of the tutor as Ds is now very panicky and upset as he hasnt been consulted.
So DH phoned LEA to let them know we are not happy at the tutor and she didnt phone us back (SEN dept) but PP lady did and asked me to consider re-referring DS back to the psychiatrist that was as good as a chocolate teapot to DS and get him on some MEDICATION.

That freaked me out as i thought,
"What is a PP lady doing, suggesting that we medicate DS"?
Then i thought about it, they (LEA) want DS back under the care of the NHS psych who can then challenge our private psych and the LEA will listen to her like they have done with regards to DS DX.

Its all starting to get too much, how much more crap can they fling at us?

Hi sorry to hear you are having a bad time of it. I can't believe that someone suggested you put your dd on medication - I take it this person is not medically qualified? I would think about complaining abou this.

With regard to the Local authority, all they are thinking about is how to save money and fob you off. Its nothing personal to them. I know its really hard but just try and think of these people as parts of a machine when you are feeling like going mad. I find this really helps. Don't let the b grind you down remember "tomorrow is another day!!!" Take care

God, by pp do you mean Parent Partnership? I thought they were supposed to be on your side. It does sound like a lot of people dealing with your son are just not talking to eachother, which is horrible for you as you keep getting all the crap. I really hope you find someone who can do something useful for you.

yes i do mean Parent Partnership, i know its outrageous isnt it?

Makes me wonder who,s been saying things to her, because there is another situation going at the moment.

In Jan of this year Ds was referred to CAMHS, they did an ADOS test (didnt let us see the video) and said NO to AS, just like that, nothing else, no more tests, just NO, and would you like some prozac for him

So this lead us to getting in touch with NAS and we now have our wonderful expert psych who only specialises in developmental disorders and the LEA dont like it.

They seem to have a cosy relationship with CAMHS especially the boss of it and are putting pressure on us to get DS back involved with CAMHS so that CAMHS can then challenge our psych.

On top of all that at a meeting last week LEA told us that CAMHS had said in their opinion DS isnt AS.

So we have written to the CAMHS psych asking her for her report on DS DX as she didnt see fit to provide us with one, that was a week ago and we,ve heard nothing but yesterday i get a call asking me to consider meds from PP oh and "he would have to see a medical person someone like dr CAMHS".

When our statement comes we are going to write to LEA to tell them that a 45 min observation that was done almost 12 months ago cannot be used as the main dx when our psych has been involved with DS for 10 months and regularly sees him, whether they will take any notice is another thing but at least it will go on file.

CAMHS's role is mental health of young people. My own understanding onf them is that they seem particularly ill equipped to work with children on the autistic spectrum. Its not their field.

Jenk, I would stand firm against the LEA and speak again with your privately based pysch. My guess is again he will be unimpressed by the actions of the LEA and PP (crikey they are supposed to be helping you!). I would certainly also complain about the actions of PP and then consider dispensing altogether with their (PP) services.

This relationship with CAMHS and this particular LEA sounds v suspicious to me as well.

I seem to recall as well that this CAMHS person stated that he was no expert in the field of Autism.

I would also speak to the NAS again too, am certain they could hopefully advise you.

I didnt understand there was a cosy relationship between CAMHS and LEA until i spoke to other parents at a support group that i go to, (im going to it tonight).

DS first clinical consultant psych was not allowed to dx him with AS, why? i have never understood until a few weeks ago and when i questioned her she couldnt tell me the answer, the answer is that the boss of CAMHS has the say-so, DS first psych came to 3 meetings with us (before we had our private psych involved) and said that she was supporting DS having a statement, behind the scenes there were letters going complaining to her boss at CAMHS from the LEA saying its not good enough to say that a child needs a statement, you should be offering help so then CAMHS psychiatrist took over and did the ADOS, said no to AS and offered us prozac and that was that.

When our private psych got involved he couldnt believe the story we were telling him, he also couldnt understand why the first psych hadnt dx,d M with AS and he telephoned her and had a long long chat with her about M.
She told him that her hands were tied, that she couldnt/wouldnt go above her boss and that her boss had the final say, she also told him that she had asked her boss to re-test M again using another diagnostic test but that she had refused, after then she asked us could she discharge M into our private psych,s care and we said yes.
It is a good thing that CAMHS are not involved as they (LEA) seem to have influence over CAMHS and they would be pressurising us.

Sorry for the long rambling message..

Oh i also forgot to add that the child psychiatrist at CAMHS said "when M is back in school then we can look at asessing him again"

I really feel for you, theres no reason I can see for this being so comlicated. if theyre looking to save money, theyre not going to with ll this toing and froing are they? Im not sure what role CAMHS round here have with AS, but a lot of kids come through the CDC and only ever see a paed and Psych, and they seem perfectly able to diagnose AS.

It all sounds very political doesnt it?

you're having a hard time. Best wishes

Received a letter from the CAMHS psychiatrist that M saw for 45mins in Jan.

RE: report for Education Dept for M XXXXX........
I was asked by VXXXX WXXXXXX clinical psychologist to see M to complete an ADOS (Autism Diagnostic Observation schedule). I saw him on 26th Jan 2006. I met with his parents on 3rd Feb 06 to report my findings. I explained that M scored well below the threshold for a diagnosis of ASD, however, he did at that time have a lot of symptoms of anxiety and some obsessive compulsive behaviours. VXXXX WXXXXXX and I met M and his parents again on 14th Feb when it was decided that VXXXX WXXXXXX would provide the follow up appointment.

So thats her view on the matter, a 45 minute test of which we were not shown the video and it was myself and my mum that saw her and the other consultant cos i asked my mum to come along to back up what i was saying about M,s behaviour.

And this letter is what the LEA are using as their "main source of M,s difficulties".

Just out of interest, did you sign a consent form to have the video done? If not, they shoyuld not have the video, if yes, then it is part of your sons medical records and you can make a request to see it. (This has to be done formally in writing.) You could also try writing to the chair of the trust that camhs is part of - its usually the community trust - and ask for an nhs second opinion on the grounds that you have no faith in the diagnosis you have been given, as it does not tally with advice you have been given by the other professionals.

Why do they think prozac is the answer? Even with adults there is a move away from ADs and towards counselling etc, so why do the want to stick a child on it without proper discussion with you?

What does your GP think?

Sorry, I still don't know a lot and don't know who CAMHS are. I think it sounds outrageous and can;t really offer advice but hope you get it sorted soon. I can believe they have suggested prozac to a child - is this common.

Just remembered that M had an asessment done by a paedatrician last month as part of the evidence for statementing.
The paediatrician said he was including our private psychs report of AS in his evidence, he also said that he agreed that M has a "social and communication disorder" but that he could not put AS down as he has not asessed him for AS properly.

I am just waiting on the papers from the statement to see what all the professionals have said and then i think we are going to write to the NHS trust and tell them that we are not happy.
The other thing is i dont really want to put M through any more asessments, he has been seen by 4 psychs, 2 psychiatrists and a paediatrician and he gets stressed out by it.

As for the video i cant remember if i signed for a video to be done, we were never offered one to see so i dont think that we did, does this mean that the test was not carried out properly?

If you didnt sign for a video to be done then they should not have done it - all pictoral records including photos and videos need your signed consent and permission to use outside the actual records.

Good luck!

Sent the copy of the CAMHS letter to our psych this weekend, today he has sent us an email saying that "her letter is incomplete and appalling at the lack of information it contains and it does not at all meet the code of practice requirements meant for a medical report".

He also said that in any asessment of an ASD the ADOS only forms a part of it and to hang everything on it is just plain wrong.

He has advised us to write to the Primary Care Trust of the hospital and complain about the Dr.

Im just waiting for the proposed statement to see what other medical evidence there is and then we are definately complaining but there is now a delay in that, but thats another story, ill try and post about that later

Your psych sounds very sensible! Sadly few people have the courage to tell consultants that they are crap because they hold too much power.