Great Ormond St. National Centre for High functioning autism

[claire4274]

Hi everyone,

 

we are going to the GP on Thursday to ask for a 2nd opinion regarding our son who is 8. We have had an ADOS and ADI last year and was told that he does not presently meet the criteria for ASD, but we may want to return for another assessment later on if he doesn't 'grow out' of his behaviours. Anyway after speaking to lots of other people, we believe that it may be aspergers. Our local SALT team after speaking to them believe it needs deeper investigation. We have lost all faith in our local hospital as we feel that our concerns have not been listened to.

 

After speaking to someone on the National Autistic Society's helpline today, we have decided to ask our GP for a referral to Great Ormond Street (he already goes there for a physical condition called Ehlers Danlos Syndrome). We have also spoken to GOSH and they agree he is the sort of case that they would look at and informed us to go to our GP and ask for a referral or go through CAHMMs to get the referral.

 

Just wondering whether anyone has experience with GOSH's Centre for High functioning autism?

 

Many thanks.

 

Claire

[Sally44]

No I haven't. We tried to get a referral to Dr Tony Siramanna [think i've got his name right?] at GOSH, relating to my son's auditory processing disorder. My GP supported it and put in a request to fund the referal via the PCT.

 

The PCT got in touch with the Community OT department who said that my son's difficulties were not 'unique', and so the funding was turned down on the basis that he needs were not unique or exceptional and that other children may seek a referal to GOSH off the back of my son's referal!

 

So my GP asked the Head of the Community OT Service that IF there were such a population of children with the same condition, why was there no business case being put together by the Community OT service to meet those needs within the OT department? No reply on that point. And to ask how many children had similar co-morbid diagnosis. The OT department replied that actually there was only one other child and that child was not on the spectrum. So my son's difficulties were unique afterall!

 

But I did not follow it further as we won our appeal [as we proved that the OT service could not meet this need], and we got the placement we wanted.

 

GOSH were very keen to see him. But there is a whole web of criteria that you have to get through.

 

I found that PALS at the local hospital was helpful in pointing me in the right direction, and was my GP in asking the right questions.

 

Afterall how can you deny a referal on the grounds that it is not a unique condition, and then not provide any local services to meet that condition because the PCT does not fund it - catch 22.

 

You might have more success as he is already being seen at GOSH.

Edited May 23, 2012 by Sally44

[claire4274]

Hi,

 

we have been to see our GP this morning and explained our concerns and said that we wanted to be referred to GOSH.

 

He seemed very interested in what the school thought and what he was like at school (which he behaves perfectly). We explained that our concerns were with him out of school and the behaviour that we see. I think he wanted to send us back to our local hospital for a 2nd opinion, which we are unwilling to do. I think because we have already been seen and had the ADOS and ADI, I feel as though he wasn't too keen to refer for the 2nd opinion.

 

Anyway, after persisting he is going to speak to our local CAHMMS team and ask them what they thought. He will let us know after this. So it is just a case of wait and see. However, we are not going away as we need answers.

 

I know that after speaking to GOSH if the GP refers the PCT have to pay for the referral, however if the local CAHMMS refer him then they don't have to pay. Unfortunately it's always about money.

 

Claire