10 months for camhs assesment?!?

I know this post is an old one but I stumbled across it today whilst searching for the exact same answer... renfrew camhs is still as bad! Its nearing 3 yrs now for me battling with camhs for my son's asd assessments to be done, its driving me insane, hes been through social anxiety talks to help him try communicate better but now thats came to an end too... all thats left is literally these assesments which they seem to be taking there time about...I'm sitting with phone in hand waiting for a call back once again... its already 3hrs past time I was told to expect call... I've found this yr I've had to push and pester just to get anywhere with them, my son transitions to high school this summer and I'm terrified his support network is going to fall apart.. wonder if it was theyre own children if the process would take as long? Hez hez and donnzmail I hope yous finally got those assessments done and got to move on to the nxt chapter.

I know this post is an old one but I stumbled across it today whilst searching for the exact same answer... renfrew camhs is still as bad! Its nearing 3 yrs now for me battling with camhs for my son's asd assessments to be done, its driving me insane, hes been through social anxiety talks to help him try communicate better but now thats came to an end too... all thats left is literally these assesments which they sewm to be taking there time about...I'm sitting with phone in hand waiting for a call back once again... its already 3hrs past time I was told to expect call... I've found this yr I've had to push and pester just to get anywhere with them, my son transitions to high school this summer and I'm terrified his support network is going to fall apart.. wonder if it was theyre own children if the process would take as long? Hez hez and donnzmail I hope yous finally got those assessments done and got to move on to the nxt chapter.

Aw thats fantastic news im so happy for u and thanks for the happy birthday hang on in there xxxx

I saw the GP today and I was on a mission! I have persuaded the doctor to refer us to a paediatrician in Yorkhill children's hospital! Yeeehhhh! So onwards and upwards! 

I also got myself sorted with beta-blockers and more imigram for my migranes, so all in all quite a successful day! I'm hoping that I can just relax now abit and know that we are heading in the right direction, so I may get some sleep tonight! 

Hope you are well, and happy birthday to your boy! X 

Aw thanks hunni i appreciate that and same for u , thats why i joined the forum cos of the lack of support in the health system , i needed to talk to people who really understand hope u get something sorted soon with a new paed xx

My wee one will be five in December and we are in Glasgow. 

15q13.3 duplication is a rare chromosome disorder, but it's still goin through alot of research, so may not be as rare as previously thought. It is associated with ASD disorders, learning difeculties, behaviour problems and emotional problems, and been linked to seizures and epilepsy. 

Im actually hoping that now we have this diagnosis that they might speed up his ASD assesment with camhs, the genetic doctor is going to write to them. 

Hope you get somewhere with the new paed dr, I can't believe that your son has threatened to hurt himself and nobody is bothering, it just realy makes you wonder what the criteria actually is! 

I am goin to see GP tomorrow about these migranes and see if he can do anything about getting my son a new paed doctor. Cause I feel that if I don't get someone to listen and do somethingg for me then I'm goin to have a breakdown!!! 

Thanks for listening, and I'm here to chat whenever you want to vent!! X 

Hi Hez Hez

 my son is 11 tomorrow and im from manchester where r u ? , thats awful whats happened to u hun so whats 15q13.3?? i think cahms need a kick up the back side a few yrs ago my son threatened to hurt himself with a knife cos i confiscated his playstation when he did something naughty , i was so worried about him i went to the DRs and the school about his behaviour litrally begging for help and my Dr refered him and they refused to see him and said he didnt fit the criteria to get an assessment and suggested i go on a parenting course , i am disgusted in the way they treat families

hi Donnazmail, i completely agree! At the moment my son has no paediatrician, and our GP is hopeless! My son was also diagnosed yesterday with a rare chromosome disorder called 15q13.3 duplication, and joint know where to turn next! The community paed doctor has retired and no one knows when or if she will be replaced! So I feel in total limbo! And then have to wait another 6 months for our camhs assessment! It is realy stressing me out and I have had a migrane since Friday because of all the stress! So I can totally relate to you! What age is your wee one? And where are you from? X 

I have only ever read of one person saying they had a good experience with CAMHS.  99% of people complain at how crap they are.  My local CAMHS has no autism expertise whatsoever, and just trained junior clinical staff to do the ADOS-2 like a tick-box exercise.  It's appalling.  Sadly, your experience doesn't surprise me.

Complain to NHS PALS if your CAMHS won't play ball, but first give them the opportunity to rectify the situation by putting everything you want in writing and pointing out their shortcomings.  Address is to the manager of CAMHS, call to find out his/her name.

The NHS is a disgrace.  Even our local CDC who diagnosed my youngest, said to me whilst I was in the depths of despair with her behaviour "what is it you think you are going to get once you get a diagnosis?".  That just about sums it up.

I think the NAS should specifically address CAMHS failings UK-wide as a priority.  All CAMHS clinicians and managers should be made to compulsorily attend ASC training and be made to keep up-to-date on research and developments to maintain ASC awareness of the variety of presentations.

hi im new here i needed some where to turn while im waiting for a diagnosis as no one seems to be able to support me or my son in the mean time i waited about 2 yrs for camhs to take me seriously and give me a first assesment appointment i was concerned my son had ADHD but after being seen they suspect he has ASD he has been refered to one of the DRs that seen him that day i think she is a pediatrician and camhs have discharged him , the pediatrician seeing him is annoyed at camhs for discharging him as the had no right my next appointment with this DR is in 3 months but what the hell are we supposed to do in the mean time???? I think the NHS is a discrace the way its leaving children and families waiting so long with out support.

Thanks for the links, I've been reading up all afternoon, but can't find any specific waiting time for Scotland unlike Nice! So more research to be done! Thanks again x 

This might be useful for Scotland regarding their autism strategy: 

http://www.scotland.gov.uk/News/Releases/2011/11/02132002

NHS NICE Guidelines state assessment should take place within 3 months of referral:

http://www.nice.org.uk/cg128

"1.5 Autism diagnostic assessment for children and young people

1.5.1 Start the autism diagnostic assessment within 3 months of the referral to the autism team."

If your CAMHS is contravening those Guidelines you should challenge them, making it very clear you are aware of the law and how they are failing it.  He who shouts loudest gets heard.  I am not sure if these apply in Scotland however.

T1llyp0t said:

Hi Hez Hez

I know how you are feeling, it such a long process it ridiculous! my son has been going through this process for 6months now and has not completed his diagnostic assessment yet, the secretatary can get quite cross whenever I telephone to ask and was informed some families can wait up to 8-9months before their first appointment. Then once in the process you have to be assessed by the team which can include Speech and language assessments as part of it and their waiting can be long. it so frustrating, how we dont end up with a break down I just dont know? I have now written to my local MP as the process is so long meanwhile my son has to wait for the right education until proven otherwise. If we dont do this for them then who does?thats what I say to keep me going. I have ven requested cancellation appointments but they said that they didnt do this but they may by you? x

I know exactly how you feel! Im lucky that my son was spotted early by the nursery and he was given extra support at a pre-school unit, so he got seen weekly from salt there. He started school in August and has a 50/50 split placement of mainstream and special school, so there is obvious issues! That is why I don't know why it's taking soo long? Camhs have received all the reports from all the professionals that are involved, so I just don't get it, on the educational side, my boy is getting help, but on the medical side, I'm getting nowhere fast! Camhs said they would call me back on Friday but no another let down, will be tomorrow now!  I just feel sooo let down by the whole diagnosis process, I've got issues with our GP and the paed doctor, and just don't know where to turn next! 

I will ask them when they finally get back in touch if they could put me on a list for cancelations, but with the way things are goin I doubt they will! X 

Hi Hez Hez

I know how you are feeling, it such a long process it ridiculous! my son has been going through this process for 6months now and has not completed his diagnostic assessment yet, the secretatary can get quite cross whenever I telephone to ask and was informed some families can wait up to 8-9months before their first appointment. Then once in the process you have to be assessed by the team which can include Speech and language assessments as part of it and their waiting can be long. it so frustrating, how we dont end up with a break down I just dont know? I have now written to my local MP as the process is so long meanwhile my son has to wait for the right education until proven otherwise. If we dont do this for them then who does?thats what I say to keep me going. I have ven requested cancellation appointments but they said that they didnt do this but they may by you? x