How long is the wait for an adult AS referral? (UK NHS)

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ToughDiamond
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06 Feb 2009, 2:16 pm

The title says it all.

I'm guessing at 12 months or more.

And is there no appreciable wait for a private diagnosis?

Thanks in advance.



Alchemy
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06 Feb 2009, 2:36 pm

I first went to my GP in October, and saw a psychiatrist in December, who (slightly reluctantly) referred me to someone who can actually diagnose ASD/Asperger's. A week ago I got a letter saying I would be assessed subject to funding. I have no idea how likely that funding is to materialise.



Dussel
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06 Feb 2009, 2:59 pm

If have a look there is an other thread regarding this issue. There are reports in this thread of up to two years. You have a look here first.



2ukenkerl
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06 Feb 2009, 3:13 pm

Dussel wrote:
If have a look there is an other thread regarding this issue. There are reports in this thread of up to two years. You have a look here first.


Yeah, you're right/wrong! The cost can be VERY expensive/free. The wait can be short/FOREVER! PICK ONE! Without more info, nobody could say!

Well, I guess older people are set in their ways, but this IS an international system. Heck, I am in the part of an airport that allows people to fly to the US, france, ireland, germany, holland, etc... and using a modem that was developed in/for germany/europe but is used all over the US.



ToughDiamond
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06 Feb 2009, 4:44 pm

Dussel wrote:
If have a look there is an other thread regarding this issue. There are reports in this thread of up to two years. You have a look here first.

Can you recall the (approx) date of that thread? And was it under "general" or "members only?" Need to narrow search criteria - I take it there's no search button on this site - haven't found one yet :(

Quote:
Yeah, you're right/wrong! The cost can be VERY expensive/free. The wait can be short/FOREVER! PICK ONE! Without more info, nobody could say!


Are you saying that if you pay, it still might take forever? When Dad paid for his hip replacement, it was done in a few days, while the NHS at the time had a waiting list of over 12 months. I'm not expecting an exact answer to how long it'll take me to get my DX. Just a rough idea. What more info would allow it to be predicted any better? Age 56 any help?
Quote:
A week ago I got a letter saying I would be assessed subject to funding. I have no idea how likely that funding is to materialise

So 3 months of waiting and they still can't even tell you whether it'll happen, let alone a date. That sucks. I feel like going private already :x



jelibean
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06 Feb 2009, 4:50 pm

I think a more appropriate question would be

"How long do you have to wait in the UK to GET A REFERRAL!" Never mind an appointment with someone!

Dr Brian Toone I believe has a minimum 12mth wait for Dx Adult ADHD, that was the last time I asked, approx 8mths ago so it may be longer by now? 8O Trouble is in the UK if you get a Private Dx the NHS don't accept it and therefore any medication or support is NOT given! Aaaaghhhh, the NHS is not geared up for us on the spectrum ONE BIT! :cry:



Dussel
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06 Feb 2009, 5:10 pm

ToughDiamond wrote:
Dussel wrote:
If have a look there is an other thread regarding this issue. There are reports in this thread of up to two years. You have a look here first.

Can you recall the (approx) date of that thread? And was it under "general" or "members only?" Need to narrow search criteria - I take it there's no search button on this site - haven't found one yet :(


You may look here: http://www.wrongplanet.net/postt724.html

Quote:
So 3 months of waiting and they still can't even tell you whether it'll happen, let alone a date.


If you are clinical depressed, or have other mental health problems, you may could accelerate this process by going not directly via AS, but via the other issues and bringing in AS as an important influencing factor. The ways the NHS works are not always direct.



Brunny
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06 Feb 2009, 7:52 pm

I noticed your age. Is there any reason you want a diagnosis now? I don't think they actually do anything for adults really.

I'm a middle-aged Aspie (probably, self-diagnosed) myself. I understand they give social skills training and whatever treatment for kids, but by our age we've already figured out everything they have to offer. Would be nice for us if they researched further but personally I don't see much point in getting a diagnosis except for curiosity.

Having said that. I am quite curious as to whether I would actually get an official diagnosis.



ToughDiamond
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07 Feb 2009, 4:54 am

Brunny wrote:
I noticed your age. Is there any reason you want a diagnosis now? I don't think they actually do anything for adults really.

I'm a middle-aged Aspie (probably, self-diagnosed) myself. I understand they give social skills training and whatever treatment for kids, but by our age we've already figured out everything they have to offer. Would be nice for us if they researched further but personally I don't see much point in getting a diagnosis except for curiosity.

Having said that. I am quite curious as to whether I would actually get an official diagnosis.

Well, the main reason is that my employer is screwing around with my livelihood, givng me more "Aspie-unfriendly" things to do, and tightening the ratchet of expectation and responsibility on me every year. It's making my working life a misery. I haven't told them yet because I don't think they'd believe me (they don't even believe people who have time off with the flu). I've seen one guy bullied right out of his job. I can't even enjoy my leisure time any more, can't seem to stop worrying about it. I manage to put it aside sometimes but mostly it's like a bogey-man, always coming back to haunt me.

I believe that I could use an official diagnosis to force them to make reasonable adjustments to my working conditions as per the Disability Discrimination Act. It should take just enough wind out of their sails to allow me to relax again. I've thought of changing jobs, but all other jobs look horrible, and I'd really found my niche in my current workplace, but they had to change it till it's all scary and horrible.

Socially I have everything I deserve, I have a wife and friends and I'm not scared of loneliness. I need a lot of solitude anyway.

The other big reason is that I just want to know. I don't entirely trust my self-diagnosis, and a confirmation would help me to move on. Self-knowledge is very important to me. Of course a negative DX would really throw me into confusion, but that's a risk I've just got to take.

And I feel I have a moral right to have my mental health problems looked at and treated by the NHS - I've paid into it all my life but they never seem to want to spend any money on me when I need their help. Just because I'm placid.

There's also this: my wife and I do have some relationship problems, though we're stable enough and reasonably happy together. Counselling with previous partners hasn't been a lot of help (though it's had its moments), but I thought it might be worth a go if we can get a counsellor with some experience with Aspies, and apparently that can be done. My wife insists that I should be diagnosed before we get the counselling, I don't know why. It's not as if she's skeptical about my having AS - she's the one who first suggested I might have it. I suspect she just wants the counselling to look at how my autism is causing trouble in our relationship, I think she's scared to examine how her own issues also cause trouble for us. But I digress.



ToughDiamond
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07 Feb 2009, 5:33 am

Dussel wrote:
ToughDiamond wrote:
Dussel wrote:
If have a look there is an other thread regarding this issue. There are reports in this thread of up to two years. You have a look here first.

Can you recall the (approx) date of that thread? And was it under "general" or "members only?" Need to narrow search criteria - I take it there's no search button on this site - haven't found one yet :(


You may look here: http://www.wrongplanet.net/postt724.html

Quote:
So 3 months of waiting and they still can't even tell you whether it'll happen, let alone a date.


If you are clinical depressed, or have other mental health problems, you may could accelerate this process by going not directly via AS, but via the other issues and bringing in AS as an important influencing factor. The ways the NHS works are not always direct.


Oh, THAT thread............I knew about that one, posted on it quite recently, it doesn't have much about waiting times. But thanks for taking the trouble to post the link.

Unfortunately, as far as I know, my head's fine apart from AS. I'm eccentric but nothing really weird or harmful. Rather prone to worrying, but take away the source of the worry and I'm fine. Possibly attention-defecit disorder, and organisational defecit. Too open to reason to be paranoid or otherwise delusional. I don't even have meltdowns, I ooze stability and good sense, I make people feel better, calmer. I have a fair bit of anger in me but I don't let myself do much damage with it. I can't honestly say that I'm a danger to myself or others.



warface
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07 Feb 2009, 10:39 am

ToughDiamond, I suggest that you go private for your Asperger's diagnosis so you can bring it to your employers' attention as soon as possible. As for support or treatment, I'm afraid you may be extremely unlikely to get it on the NHS. Asperger's simply does not figure in the priorities of mental health services. As mentioned above, only severe cases of clinical depression and psychosis get immediate attention.

(p.s. some of you may be interested to note that in my experience as a medical student, autism is only taught in the context of childhood development, while Asperger's barely gets a mention)


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ToughDiamond
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07 Feb 2009, 2:11 pm

warface wrote:
ToughDiamond, I suggest that you go private for your Asperger's diagnosis so you can bring it to your employers' attention as soon as possible. As for support or treatment, I'm afraid you may be extremely unlikely to get it on the NHS. Asperger's simply does not figure in the priorities of mental health services. As mentioned above, only severe cases of clinical depression and psychosis get immediate attention.

(p.s. some of you may be interested to note that in my experience as a medical student, autism is only taught in the context of childhood development, while Asperger's barely gets a mention)

Yes, the private route certainly looks like my best option. I know there isn't much in the way of support, but I'm OK with that. I must have been unknowingly developing coping strategies for years, and I'm not fundamentally unhappy or desperate to be shown how to overcome anything. I hope they don't charge extra for assessing possible comorbid problems.

I've noticed that there isn't much understanding of adult AS, compared with autism in kids.



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07 Feb 2009, 2:50 pm

ToughDiamond wrote:
The title says it all.

I'm guessing at 12 months or more.

And is there no appreciable wait for a private diagnosis?

Thanks in advance.

Your guess is accurate for the Maudsley or anything like it.

Private essentially has no waiting list just appointments. So maybe a month or two.


And yes kids are treated complexly different. The referral route for kids is different as are the people who see kids. It is illogical but that is the system.

However if you do have a paediatrician that is also your GP this is a good option for the referral as they have more training in PDDs.