recent diagnosis.. and lost...

[YMo7]

Found out about a week and a half ago that DD has Ataxic CP... (after 6 years of waiting for answers)... anyway... The spastic centre told me to apply for carers payments, make catholic ed aware and apply for help a continence clinic.

problem: everyone wants letter of diagnosis and i didnt get one from the neurologist. (didn't even get a diagnosis from the neurologist actually - found out through a letter that he sent the spastic centre and the neurologist writing the diagnosis on an eeg request form.....

we dont see the neurologist for another year so how do i get a letter of diagnosis?

I have a report from the spastic centre that says that they have received a letter from him stating her disability several times... is this enough? or is it enough to take to her gp and get them to write a letter of diagnosis? is a letter from the gp enough for these places?

sorry all the questions... we are at the beginning of all this and unfortunately too many of you have been doing this for alot longer than my family so i thought some of you might be able to help...

TIA..
S.:hugs:

[Nowhere]

Hey there

Now that she is under the Spastic Centre you get them to do your letter and stuff for proof of DX they will atatch the leter from the neuro and add there bits that wil be enough for careers payment ad for schools pluss.

HUGS i know what the long road to a DX is like Dd is 4 and a half and has hypotonic CP, and lots of other issues and we stil dont have a full DX that causes it all

[YMo7]

Thanks MM, but the Spastic Centre are saying they cant attach a copy of the letter and they have done all they can in terms of letters because the Dr wrote something on it that they haven't seen much before... apparentyl he wrote on the bottom that it is intended for the addressee only and if they wanted to "share" to with anyone else, they would need to contact the Dr for written permission... As far as the stupid Dr goes - he still doesn't know that we know the diagnosis...

[chopper19]

You should double check I would defenately say you are allowed to see any letter the doctors have written about your child under the 'freedom of information act'.

[mummyof9kids]

If your child is being seen by a pead then they are the best people to go to for letters and things because places like centrelink need a pead to sign there forms .And in most cases if you ring your childs nuro and ask for a letter then they should send you one.all the best.

[SpottySocks]

Who referred you to the neurologist? Generally the referring Dr should get a letter back from the neuro.

I know my DD has been referred to a neuro and orthopedic surgeon and rehab specialist doctor at various times and each time we didn't get anything in writing but the paed had letters from them at our next appointments. When we got a diagnosis from a Geneticist it was our paediatrician who signed off on the paperwork for the Carers Allowance.

Goodluck, it is all a bit daunting to start with and seems every state is slightly different which doesn't help!