Heard Back From CAMHS

[jenk1]

well heard back from CAMHS re our complaint letter about the way the psych put dd,s toileting difficulties down to "not playing with her enough"

It seems we are to attend a meeting with the original psych and another psych,who is the Consultant Psych we havent met before.

They are "sorry" that we felt downhearted about the last appointment and due to the issues raised would like to call us to this meeting.

Definate case of arse covering me thinks.

now i dont want to go to this meeting because

a, they will try and put a spin on how we misunderstood what was being said

b, we,ve never met this consultant psych and
are wondering why shes been brought in,presumably shes the original psychs boss

c, we want them to put in writing that they will take account of dd,s sensory needs and refer her to an OT for an assessment.

anyone advise me?

thanks
xx

I think you should go, if only to clarify where they're going next with things. If necessary, write down the things you want to be discussed and send it in advance to be put on the agenda. TBH, it doesn't really matter what they've said in the past so the putting a spin on things shouldn't be necessary. It's what they will do now that they need to commit to.

part of me thinks we should go and part of me thinks look what happened last time.

when the CDC dx,d DD and withdrew it 3 days later after a chat with the ed psych,we went to the meeting with the consultant paed and a member of the executive board and they just basically fobbed us off onto CAMHS!!!!

so 14 months later CAMHS have done the same, i came away from the last meeting feeling very downhearted and made to feel that we were imagining DD,s ASD.

feel a bit confused really.

i 'm not a fan of CAMHS i have had one big battle with them trying to get them to see what we see in our DS at 5 he was dx with ADHD but i kept on at them saying it was more than that but they dismissed me every time 4 years on i haven't let it lie and i am lucky to have connections with the head psych of our area this trod on my DS's consultants toes a bit and she was rather off with me that i had got in touch with him but i told her i will do what it takes and go in other directions to get anc opinion.. before xmas i got an appology from her (yes that word is in their vocab)saying there was more to it than just ADHD and she eventually put him down for an ADOS which she wanted to do around easter. Again i went over her head and spoke to head psych and 2 weeks ago out of the blue my Ds got a cancellation(not sure if this was a genuine one or a little help was given) but i was grateful as it was a consultant we had never met and was nutral he did his ADOS and said that he strongly disagreed with my DS consultants opinion of a mild PDD-NOS and said it was more severe and said he was ASD i now have to wait to see my Ds consultant which i dont want to see but i am going as i think she owes me another apology.
Stick to your guns don't give up

What are their reasons for saying she does not have an ASD, Jenk?

CAMHS in this country don't tend to dx PDD-NOS very often. It's quite an American thing.

Here, they tend to call it autistic traits or nothing at all. If she's privately dx'd with PDD, what dx are you hoping CAMHS will give?

Their main reason for not dxing her is that she is too sociable.

she IS sociable but it all has to be on her own terms,
she has to control the game and the rules are what she says and if she doesnt "win" she gets very very upset.

They have only skimmed the surface with her,yes if you saw her in a group of children she would appear to be socialising and playing,but if you watched her you would see that she is hesitant and she imitates,then sometimes she is very controlling and likes to "police" the other children,telling them off for talking when the teacher talks etc.

She has various sensory difficulties
and she had a speech and language delay when she was younger and its hard to get her to have a conversation if its not about something that interests her.

she loves to stim and spin and she will walk around and around and she is very very hyper.

im hoping they will dx HFA.

J is also surface sociable, but only on his own terms. His autism was missed for ages, but a clever observant psych (more observant than me who had no idea ) and the ADOS test spotted the subtle traits.

Have you tried getting the DSM-IV and going through how she meets the criteria? I did it for my ILs - see my post in this thread

www.mumsnet.com/Talk?topicid=special_needs&threadid=488433-how-obvious-is-your-dcs-asd-as-to-others# 9858586

...the really really long one!

Thanks for that link,its very very helpful.

we did take the DSM IV to the meeting with had with the consultant paed and as soon as i got it out and started quoting it her attitude changed and she said CAMHS!!!!!

im going to go through it with a fine tooth comb and highlight where DD fits.

Incidentaly DS had the ADOS test,but we werent allowed to watch or see the results and the consultant psych said his scores were too low, when we subsequently wrote to her and asked for a copy of the video and an explanation of why we werent offered this,she backtracked and dx,d him with PDD

im drafting a letter asking for clarification about the meeting and if DD is still being assessed for an ASD cos no tests have been carried out and we havent been invited to a meeting to discuss the consultant psychs school visit in dec last year.

OMG-do you have the same CAMHS team that we do? Our old psych. also put our 2sons difficulties down to not playing with them-one was already dx with ADHD and the other has since been dx with Dyspraxia-he also had toileting difficulties(soiling).Son with ADHD dx with Aspergers last year,(by different Health Board), and other son also in process of dx of ASD.Surprise, surprise, nothing to do with not playing with children- which we always have done, and psych. had no basis on which to base this.Trouble is, cos letters she writes signed by Psych. other professionals put great weight to it.I do not know your full story, but how old is your daughter?What is DD-developmental delay or developmental dyspraxia? As for ed psych. dont get me started-my son with ADHD went through nearly the whole of primary school with him insisting he had no problems and basically inferring we were the problem. Grrrrrr.This would be the same ed psych. who never saw my son in class(till primary 7 and the Head had got the Educ. Dept. involved). How dare ed psych feel ok to pass comment or disagree with your daughters dx-education profess. certainly do not like other agencies having an opinion on how best to educate someone-ive seen this in action with my son.Have faith in your convictions-you are the expert in your child, and probably are NOT imagining DD,S ASD.Consult. psych probably there cos you complained and there to represent CAMHS team(or hold original psychs hand).Insist there was not a misunderstanding of what was said-you are not there for an assessment, neither do you have a hearing problem or a communication difficulty-be blunt and dont let them flannel you.If your DD has sensory difficul. ask them WHY she has not been referred to an OT-an OT can do a sensory profile and also dx Dyspraxia independently of CAMHS.Say, you want all copies of minutes, reports from now on-you are entitled to this.Lastly, many children with ASD have toileting difficulties and sensory issues.Go to the meeting and dont be fobbed off-good luck and let us know how you get on.

I would ask for an ADOS - to be done by someone who has not met dd before so they can be totally impartial.

trouble is most of them in our authority and the next one HAVE met DD and have fobbed her off to the next one.

i dont know how a child can go through a thorough 3 day CDC asessment and the outcome is that she presents with

delayed language skills
minimal social reciprocity
interaction difficulties

all these are indicative of an ASD but time will be needed to clarify dx.

so they dx her and 3 days later when the ed psych phones to vehemently disagree they withdraw,we complain to executive director of NHS trust,a meeting is held and we are sent to CAMHS who havent done an ADOS, CAMHS dont like us cos of all the uproar we caused over DS 3 years ago.

SIGHHHHHHHH.

i could ask them to refer her to lorna wings place or Prof elizabeth newsome in nottingham i suppose,but i know wot they will say.

I doubt they'd have any reason to refuse to give her an ADOS, given the fact that she has so many traits.

I think you need to be very clear and factual with them - we'd like x because of y and we'd like it done by z.

Have heard awful things about our local CAMHS too.

Seems that some of the practitioners take the 'parents are to blame' approach in every case. They used to do that in psychiatry - schizophrenia was the parent's fault - but it is now generally recognised as a condition with possibly genetic rather than environmental causes. Too late for those poor parents who were labelled so cruelly.

Whatever you do, I would try to keep very calm and present your case very clearly, so you avoid running the risk of being labelled as hysterical 'problem' parents and ask that someone sends you notes from the meeting that you pick through with a fine toothcomb. That sort of label gathers momentum as it is passed from one professional to another.

I ask again, how can it be an ed psych can over-rule a Health decision?? Do the NHS have so little faith in their clinicians decision making-if so, why are they paying them huge salaries? The whole situation just beggars belief. Have you got a copy of the CDC assessment-if not, get one. I would also seriously think about accessing all your daughters health files and education files-in them, all telephone conversations and correspondance should be logged-be interesting to read what the ed psch objected to so strongly.You will also be able to see what their opinion is of you as parents-may go some way to explain lack of progress in dd,s case.

To donkeyderby,have you been reading our sons files?(are you his original psych-how embarrasing-and if you are, yes,it is personal).:O

To donkeyderby-again-the above is a joke,(sure you know that)but have just re-read above and didnt want to cause offence.

sorry you are still going through the mill with CAHMS and the toilet training. hope you kick their arses at the meeting!

We were due to go to a tribunal for DD to get her assessed.

The Ed psych telephoned CDC and i dont know what she said but the phone call we got the paed said "she doesnt see ANY ASD traits or agree with us" i asked had they peformed their assessment of DD incorrectly then and he said well you are being referred to CAMHS now so take it up with them.

This Ed Psych was so unprofessional and went in to see DD 3 times at nursery,she wouldnt return our calls or go through her reports with us, and we ended up writing to the executive director to say that we refused permission for her to work with another one of our children again.

yes ive been thinking about accessing DD,s records and i think im going to do that,something has gone on and i want to get to the bottom of it.

Also the uproar over DS,CAMHS were NOT happy that they had to dx him with AS,they only did because we wrote asking for a copy of the ADOS video/notes.

im not confident about going to a meeting with CAMHS unless our private psych is with us,because i know how they can twist things and also i have a bad temper when im being accused of not being a good parent, i emailed him and hes advised us NOT to go to ANY meeting but to get everything down in writing off them,we have already asked to look at DD,s CAMHS notes and im going to write and formally request them.