For DS's official medical dx of ASD we are now on a witing list for a 'panel' to dx - is this the same in all areas?? Guess how long the waiting list is [hmm]

[aSilverLining]

He should get to the top of the list 'sometime around November give or take' 'and even then they may decide to delay official dx as he is so young'

Sigh. huff. puff.

He is 5, I have been pushing for this for soo long it feels. He has had all his assessments eg paediatrician, edpsych, specialist SALT, etc I understand it is better for a panel to decide than just one person but FFS, amongst all this bureaucracy is a little boy struggling and a mum pulling her hair out.

Do all areas do this panel thingy and have a long waiting list for it? I am so impatient and frustrated.

It takes 2 hours to diagnose, with an experienced and qualified professional.

Is there anyway at all you can get a private dx. I know you shouldn't have to but that will put you 6 months ahead which at such a young age is important!?

Saw a panel of 2 professionals when DS was 3. Took 9 months from referral to diagnosis appointment. They merely confirmed that he was on the spectrum but wouldn't say where on the spectrum as too young.

Well I don't know, my bank manager would say no, my mummy head says fuck it I will live on stale bread if I have to. How much is a private DX? {flinches ready for answer}

Is that just one professional then FNN? Wy is it it can be done that way but my sweet sad little boy is having to wait until at least november for someone to tell us what we already know and have grieved over. I want DX so can access help (eg earlybird) and also simply for my own sanity!

Yes, they use hide behind the panel process in this area too.

I understand why but we had a rudimentary SALT report and ten mins with a Paediatrician. My son has never seen the Ed Psych. So what difference is a panel to make.

Write to the head of the service, or the Chief Exec of the hospital or the PCT. Ask why it takes so long and when you are going to be seen

sorry about this £700 in SE

waitingforgodot - was that NHS? I am off to look when I asked GP to refer me to paed at autism centre, I know it was forever ago

We've been on waiting list for the panel since November last year. Got the letter this week for appt with panel mid June, so a wait of 7 months. And that was with them 'rushing us through' so Ds could get his diagnosis before he starts school in September (he is 4.8yrs)
I hope its worth waiting for!!

yes NHS

We had his paediatiatrician assessment appointment (our first stop on the medical merry go round) on 7th October 2008 followed by SALT, then Edpysch, then SALT specialising in ASD, etc etc.

I am naturally impatient as it is but this is ridiculous no? Do you think it is worth me putting in an offical complaint??

hell yeah

£700 no way can I afford anything in that ball park. Usually I am not fussed about being poor and happily count my blessings but knowing if I were well off DS would have his dx makes me feel a little bitter to be honest. I hope I wake up in a better mood tomorrow!

silver In that cases you'll have to use the resources you DO have and get writing and keep writing, until it is costing them more in resources to answer your letters than it is to pay the paed overtime to see you on a Saturday.

Seriously, it is possible to move yourself up the waiting list. First write and ask for a working diagnosis, then write and ask what services you will be referred to after dx so you can introduce yourself ahead of time so they are expecting you, then badger them to badger the dx people etc etc etc. You may as well start as you mean to go on.

may08 was my first foray into the SN boards discussing DS, I can't believe what a long process this is!

Well this is how I know where he is on the list, I called 'Patient advice and liason service' AKA complaints department to chase up his elusive DX and a lady called me backa nd told me what I put in OP. I think an official complaint is going to be the way to go isn't it. I do write a good complaints letter but I am tired [whine whine whine] (I really am, am waitingfor blood test results and so on).

just do it.
Will be worth the effort

If you push and push and harrass you may be able to get a 'verbal diagnosis' from just a Paed. This is what we have got for DS (5 yrs old, AS). We then got her to put it in a letter for us to keep, and in her medical advice to the LEA for SA.

He will still have to have a proper DX at some stage, but the 'verbal' has drawn down all the support he should be getting with a full, multi-disciplinary DX.

Phone the Paed's secretary and push for an appt. Say you'll go on the cancellation list, thank you very much. Google the Paed's name and get his/her email address and email them personally, making your case.

Do not accept NO for an answer.

Should add - it is only a Paed / medical doctor that can diagnose. All the rest is padding and filler.

I have the paed's report of his assessment, will dig it out as cannot remember exactly what it says. I have used it for his DLA form and I think it definately helped. Th paed did tell us verbally while we were sat in his office that DS is on the spectrum, but told us his official written dx had to come from panel not him as an individual. All the people who have seen him have told me he is n spectrum, his GARS forms showed significant ratings, there is no doubt it seems, which is why it is so frustating having to wait like this just for some offical's rubber stamp.

I will definately be gathering energy reserves to push this to it's end. I am fed up of waiting.