UK people - How long did your referral and diagnosis take?

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Guineapigged
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11 Oct 2011, 2:35 am

UK only please!

I saw my GP yesterday and he is going to write a letter to my psychiatrist about possible ASD.
How long should I expect before getting an appointment/response? In emergencies I can see him pretty much immediately, but obviously this isn't an emergency so I would expect to be put on some kind of waiting list.
Will my wait be quicker because I'm already heavily involved with MH services? Is ASD even diagnosed by a psychiatrist? Or will my psych have to refer me to a different specialist?
I know some of you went private for your Dx, so I should add that I don't plan to do that. Just the plain ol' NHS for me.

TL;DR - how long did you have to wait for your referral, and what kind of professional made your diagnosis?



The_Dude
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11 Oct 2011, 3:05 am

I waited 4 months to see a psychiatrist for diagnosis. Apparently this is exceptionally quick and it's more usual to see a clinical psychologist for dx. I had an urgent referral though which might explain both. Most other people I've met post dx saw a psychologist and had to wait longer, more like 6-12 months.

I think there's some pretty big regional differences to bear in mind so it's going to depend a lot where you live, even though it's not supposed to...

This long wait is reconised in the Autism Act somewhere I think and you shouldn't be denied any help you might need now because you are still waiting to see someone for a diagnosis appointment. I think it says something along those lines, you might want to check it if that sounds relevant :)



nemorosa
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11 Oct 2011, 5:03 am

I got to see a psychiatrist very quickly, but I'd just had a major incident so perhaps I was considered more at risk or in need of more immediate assistance. In any case, I had the bad luck to be seen by somebody who clearly doesn't believe in adult diagnosis nor will they refer me on to someone with more expertise. It is a long and complicated saga, but I have now exhausted all the possible avenues for progression with my GP and am now stuck in NHS limbo. Still considering going private.

From what I hear there is no standard for adults across the UK, it all very much depends on your NHS trust and the attitudes of those you meet. Best of luck to you.



ToughDiamond
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11 Oct 2011, 5:21 am

It was a good few weeks. The situation in my workplace was getting critical, so while waiting I panicked and went for a private DX, and then the NHS appointment came through a few days later. :x

If you phone the surgery, they ought to be able to tell you how long your wait is likely to be. I think in my area the maximum was supposed to be about 12 weeks.

I've heard of some people getting disappointed because when the appointment comes through, it turns out to be just a cheap, preliminary screening rather than the DX itself, then if they get through that hurdle they have to go back and wait again. I used to think the NHS did this deliberately to wear people down and avoid spending money, but the NHS doctor who dealt with my case took the trouble to write to my GP with some guidelines about dealing with Aspies, once he knew I was positive.



Keeno
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11 Oct 2011, 6:13 am

It only took a few weeks for me between first seeing my GP, and getting the diagnosis, which was by a psychiatrist. But for others it took months and months. Times to get a diagnosis seem to wildly vary in this corner of the UK.



PaoloTrep
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11 Oct 2011, 6:40 am

Collectively I would say it took me around a 8-9 months from seeing my GP to recieving final diagnosis. I had to go to my GP who referred me to a psychiatrist, who referred me to a clinical psychologist, who referred me back to my GP who then referred me to the South London and Maudsley NHS Trust.

That process took around six months bu that's because there was a f**k up with the PCT and the GP which I had to mend myself.

Three months for an appointment from that point.

Still waiting for the written full report but I consider my journey to diagnosis complete, got the aftercare bit to worry about now.



trappedinhell
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11 Oct 2011, 6:56 am

It took me 10 weeks to see a psychiatrist the first time, and 6 weeks the second time. But he was not specifically qualified in AS, and has referred me on, It should take another 5 months to see somebody qualified, and goodness knows what happens after that.



Mummy_of_Peanut
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11 Oct 2011, 7:24 am

I wish it was as quick for children. In December, the depute head at my daughter's school contacted our council's autism outreach team, who advised her to make an appointment with SALT, as this is the first step for kids. She had a SALT triage appointment at the end of June and was placed on the waiting list for a full SALT assessment, which should have happened by now, but we don't even have a date for it yet. At that time, she was also placed on the autism assessment waiting list, which is 2 years, in Greater Glasgow.


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nemorosa
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11 Oct 2011, 7:29 am

trappedinhell wrote:
It took me 10 weeks to see a psychiatrist the first time, and 6 weeks the second time. But he was not specifically qualified in AS, and has referred me on, It should take another 5 months to see somebody qualified, and goodness knows what happens after that.


Well done to him for at least acknowledging it isn't his area of expertise. The sign of a true professional is one who'll admit their own limits. Sadly so many are worried about loss of face, to the detriment of their patients.



ToughDiamond
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11 Oct 2011, 7:47 am

Mummy_of_Peanut wrote:
I wish it was as quick for children. In December, the depute head at my daughter's school contacted our council's autism outreach team, who advised her to make an appointment with SALT, as this is the first step for kids. She had a SALT triage appointment at the end of June and was placed on the waiting list for a full SALT assessment, which should have happened by now, but we don't even have a date for it yet. At that time, she was also placed on the autism assessment waiting list, which is 2 years, in Greater Glasgow.


That's way too long. One faint ray of hope for anybody waiting a long time is that I once heard that the moment you're on the waiting list for the DX, then under English law at least, you have to be treated as if that DX was likely to turn out positive. So workplaces and schools can't ignore the condition once they know you're in the queue. It might be worth checking out what the local law says, if the school isn't making adequate adjustments already. I'm assuming you pretty much know it's AS already.



trappedinhell
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11 Oct 2011, 8:06 am

nemorosa wrote:
trappedinhell wrote:
It took me 10 weeks to see a psychiatrist the first time, and 6 weeks the second time. But he was not specifically qualified in AS, and has referred me on, It should take another 5 months to see somebody qualified, and goodness knows what happens after that.


Well done to him for at least acknowledging it isn't his area of expertise. The sign of a true professional is one who'll admit their own limits. Sadly so many are worried about loss of face, to the detriment of their patients.


Yes, it was good this time, because there is now a qualified professional in the Highlands. But the previous time (a year earlier) there was nobody qualified within hundreds of miles. I saw the same guy. And instead of referring me elsewhere (which would have cost money) he just said "I cannot say for sure but if you have any problems at work tell them to contact me." Which was less than satisfactory. But all's well that ends well I guess.



Mummy_of_Peanut
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11 Oct 2011, 8:09 am

ToughDiamond wrote:
Mummy_of_Peanut wrote:
I wish it was as quick for children. In December, the depute head at my daughter's school contacted our council's autism outreach team, who advised her to make an appointment with SALT, as this is the first step for kids. She had a SALT triage appointment at the end of June and was placed on the waiting list for a full SALT assessment, which should have happened by now, but we don't even have a date for it yet. At that time, she was also placed on the autism assessment waiting list, which is 2 years, in Greater Glasgow.


That's way too long. One faint ray of hope for anybody waiting a long time is that I once heard that the moment you're on the waiting list for the DX, then under English law at least, you have to be treated as if that DX was likely to turn out positive. So workplaces and schools can't ignore the condition once they know you're in the queue. It might be worth checking out what the local law says, if the school isn't making adequate adjustments already. I'm assuming you pretty much know it's AS already.


She's on the school's additional needs plan. The depute head told me that the diagnosis itself didn't matter so much to them as getting an assessment of her needs, which will start with SALT. However, I am concerned about the school as there's very little information coming from them, unless I initiate conversation, which isn't really encouraged. They're not deliberately evading me, it's just a really busy school, but I feel I'm in the dark a lot of the time and anxiously waiting for the parents' evening in a couple of weeks. It's almost a year after I first raised my concerns about my daughter's concentration and social skills and no ed psychs have visited her yet.

We're pretty sure it's AS. The SALT therapist was by chance an AS specialist and, although he's not able to provide a diagnosis, was speaking about her as if he could tell she had it (we and the teachers already suspected it). He even spotted things that I hadn't even associated with AS, even though I've been doing a lot of reading. He also asked about family members with social issues and gave me a knowing nod when I mentioned myself.


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Guineapigged
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11 Oct 2011, 8:21 am

Thank you for the helpful answers, it was interesting to hear people's different experiences. Like the rest NHS services, I guess it comes down to postcode lottery.
Fingers crossed I don't have to wait too long.



Aspiewordsmith
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11 Oct 2011, 8:47 am

It took me about 6 months filling in an Asperger syndrome questionnaire to me receiving a diagnosis, for which I had to go to Cambridge and I saw a clinical psychologist. The date of the diagnosis was Friday June 26th 2003. :arrow:



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11 Oct 2011, 9:18 am

Mummy_of_Peanut wrote:
It's almost a year after I first raised my concerns about my daughter's concentration and social skills and no ed psychs have visited her yet.

Sounds like the matter could have been kicked into the long grass. I'd really love to live in a society in which not only the squeaky wheels get oiled, but until then I suggest you keep squeaking and pestering. It's possible that they've quite innocently forgotten and just need a friendly reminder.



stumbelina
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11 Oct 2011, 10:37 am

Im in the process of getting a diagnosis now.. It has been very quick so far. I waited for a month from referral to see a psychologist, and Im on my third session. I am in the Manchester area by the way.