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Macbeth
Thane of Bar and Cellar
Joined: May 28, 2007
Posts: 2191
Location: UK Doncaster
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 Posted: Wed Jul 02, 2008 8:19 am Post subject: Diagnostic route in the UK is expensive and foolish... |
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Speaking to my ex-wife today, I have learned that she is yet another victim of the utterly convoluted and retarded system of diagnosis in the UK.
She is seeking a diagnosis of Aspergers. She has two Autistic children, runs a support/paygroup for Autistic children, works for Autism Plus (local support services), has an ex with AS (yours truly) who also has a partner with AS (The fabulous LadyMacbeth). Its a fair bet that she has a good idea what AS involves. For example, she knows, as do we all, that AS is NOT a psychiatric illness. However, in infinite wisdom, her GP has forwarded her to the local Psychiatric Nurse, who will then recommend that she see a psychiatrist, where she will then be forwarded to a specialist in AS.
This is a similarly circuitous route to the one I had to take, as did LadyMacbeth, and the children. Is it really the most effective way to determine if someone has AS? To exhaustively grind through everything it is not, in order to reach a point that everybody else has already reached? Is it cost effective? Is it an efficient use of any of these peoples time, ours included?
No. So why is it done this way? Does a GP forward us to a chiropodist when we are having problems hearing, so that the chiropodist can tell us that his skills and training are useless? Would a (good) doctor recommend to a patient with broken legs that he have his arms checked and set?
Currently the diagnostic route seems to involve at least 4 people, each of whom are wasting valuable time. Surely a GP, when asked, could simply say "Very well, I shall forward you to an AS specialist, the one person who can tell you in under 30 seconds if you have AS, thus saving hours of time, money and stress. If you arent, THEN we will look into testing you for all sorts of random sh**." Is that hard? Is it illegal? Methinks not.
Or maybe they could let us organise appointments with specialists without all this f***ing about. It couldnt waste any more of their time than the current farce.
Thoughts? Suggestions? How do we change a monolithic system for the better?
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Liopleurodon
Sea Gull
Joined: Jan 17, 2008
Age: 29
Posts: 212
Location: The Tethys Sea
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| Posted: Wed Jul 02, 2008 8:52 am Post subject: |
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Heh heh heh preach it brother. I'm in a similar situation... I've seen my GP and have the appointment with the psychiatric nurse next week. Hopefully she will shuffle me on to the next link in this convoluted chain, although I have a feeling she might just try to make me go away.
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Willard
Suicide Mohel
Joined: Mar 24, 2008
Posts: 1525
Location: CSA
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| Posted: Wed Jul 02, 2008 11:29 am Post subject: |
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It is the western scientific method - that before determining whether the apparent pachyderm is indeed an elephant, we must first determine beyond doubt that it is not in fact, say, simply a rhinoceros with an extremely long and flaccid horn, or perhaps a hippopotamus with a large facial polyp. or even some new and as yet unidentified species of frog.
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craola
Deinonychus
Joined: Mar 21, 2008
Age: 21
Posts: 352
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| Posted: Wed Jul 02, 2008 11:46 am Post subject: |
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At least we get to see someone and don't have to pay.
I know its tiresome, long and I'm sure its annoying (I had a mental breakdown which led to AS being suspected) but we do get to see someone which is a lot more than others get. I hear non stop complaining from people in the mental health system but half of them don't realise how lucky they are.
I do very much agree it would be wonderful if GPs knew enough to or were able to refer straight to AS specialists and hopefully one day that is what will happen, I don't know what it is that's needed, raising awareness so more understand or just a change in the system. It was my psych who said I wasn't Rain Man so could have AS luckily my psychologist had some sense.
Do more people need to know about Autism or do the NHS need to understand its not mental health related? |
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krex
Phoenix
Joined: Jun 21, 2006
Age: 46
Posts: 5090
Location: Village of the Damned
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| Posted: Wed Jul 02, 2008 1:26 pm Post subject: |
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I thought this pattern was just the incompetence of the insurance companies in the US  , You mean we get to look forward to the same incompetence when we get socialized medicine here ? I was blaming it on the psychiatric lobbies trying to get their "middleman fees" . Their is nothing scientific in psychology. We should be referred to neurologist who specialize in autism and the common co-morbids...one stop shopping.
I did have a choice here but it would not have happened if I hadn't insisted to see a "specialist in AS" whose phone number I had with me. My GP didn't even think I should see anyone as I obvioulsy couldn't have Aspergers, since I could talk Yeah...more information is needed for the public and professionals.
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Magicfly
Snowy Owl
Joined: Mar 17, 2008
Age: 32
Posts: 143
Location: On a dust mote
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| Posted: Wed Jul 02, 2008 1:47 pm Post subject: |
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This is very interesting, and I will bare this in mind....
I told my GP I that my therapist thought I had AS (so do I after reading what it was) he said he needed me to write down why I think I have it, and he was also going try and find my old notes from being evaluated at 2.
Anyway, he said I would need to be referred to a psychiatrist.
I got the referral in last week, and I'm going to be seeing a clinical psychologist.
It says in the letter the appointment will last from 45 minutes to an hour, so I am guessing from other accounts here that this may be an actual assessment for AS?
I'm just curious as I am also in the UK (Scotland) but it appears we have a different system in place. |
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Anniemaniac
Velociraptor
Joined: Nov 04, 2006
Posts: 403
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| Posted: Wed Jul 02, 2008 1:58 pm Post subject: |
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I had a very similar experience with the GP and eventually had to go private for a diagnosis.
When I first went to see my GP, I didn't mention AS, because I didn't want her to look down on me for "self-diagnosing", so I just told her my symptoms. What did she do? Tried to send me for a HEARING test (?!) and gave me a form filled with phrases like "I don't enjoy things I used to anymore" to test for depression.
The next week, I went back to her, after filling out the form. She told me she was surprised I hadn't answered yes to more of the statements. I then mentioned AS, and she refered me to a Psychiatrist, who refused to see me, and instead sent me on to an AS specialist, who ALSO refused to see me... so yeah, the NHS system really lets you down with things like that. |
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krex
Phoenix
Joined: Jun 21, 2006
Age: 46
Posts: 5090
Location: Village of the Damned
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| Posted: Wed Jul 02, 2008 2:00 pm Post subject: |
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In the US....my appointment was 4 ,hour long sessions. I think the one hour thing would be more to "rule out" a mental illness and then refer you to an As specialist if they don't see something else going on. Problem is someone who doesn't understand As might just focus on the accompanying depression or anxiety, (or whatever their particular specialty is, ie....you "find" what you are looking for=bad science) Hope you don't get a moron.
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lotusblossom
Phoenix
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Joined: Jan 14, 2008
Posts: 1156
Location: UK
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| Posted: Wed Jul 02, 2008 2:08 pm Post subject: |
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I think the "I exist" NAS campaign is aiming to tackle this problem.
Its because ASD does not fit in with mental health or learning difficulties and why there is no after support either. I think its because the diagnoses is so new (comparatively).
I got mine private as I did not want to see lots of different doctors and most (in mental health) know nothing of autism anyway, after all there is little on it in their training. |
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liloleme
Velociraptor
Joined: Jun 09, 2008
Age: 42
Posts: 424
Location: California
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| Posted: Wed Jul 02, 2008 2:22 pm Post subject: |
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Getting a diagnosis for a kid who has reached the cut off age is even more difficult in the US. Unless of course you have money to spend. I was told my insurance will not cover my sons evaluation because he will be turning 6 next week. I will have to go though the school system or private pay. I dont entirely trust the public school to get a correct diagnosis. Seeing as how they will be paying for the childs education and therapy they are not too terribly generous. I was fortunate that my daughter was diagnosed before the age of three. You can get all early intervention services as long as your child is diagnosed before age 3. My daughter showed signs of Autism very young and was diagnosed with mild to moderate Autism. My son is showing signs of Asperger's but Im afraid its going to be difficult to get him properly assesed.
I just went to see my older kids psychiatrist....he was actually excited because I was the first adult female that he ever diagnosed with AS. |
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HarryWilliams
Sea Gull
Joined: Apr 07, 2008
Age: 111
Posts: 219
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| Posted: Wed Jul 02, 2008 2:39 pm Post subject: |
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| Macbeth, I believe in most areas of England the first port of call is a Psychiatric Nurse for triage. A lot of GP's are unhappy that they are denied direct access to psychiatrists for their patients... Quite frankly, the idea sucks, diffential diagnosis of ASD's is extremely difficult, and even a Consultant Psychiatrist is only expected to diagnose 'straightforward' cases. A nurse will most likely only see anxiety or depression and send people back to the GP for happy pills. |
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forallotherthings
Blue Jay
Joined: Jun 22, 2008
Posts: 78
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| Posted: Wed Jul 02, 2008 2:46 pm Post subject: |
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This is one of the reasons I will never seek any form of diagnosis, I can't imagine I will ever even be refferred from my GP as he already thinks I'm a hypochondriac because I have been in numerous times complaining of things he deems 'depression' and sleep problems which he thinks I am trying to get benzos for when my main problem was I wanted to be reassured there was nothing wrong with me causing the sleep issue.
Then should I ever get refferred I'd have to justify myself to loads more people and I just couldn't handle this. I can't imagine how they would react to a self diagnosis (technically I havent self diagnosed cos I'm not convinced but I would like to know cos of what other people have said), not well I would guess since he took it quite badly that I didn't agree I was depressed and I truly believe I am not depressed in the clinical sense and find taking anti-depressants futile when all I am is frustrated with myself. |
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