UK - NHS ASC Failures: Please tell me your stories

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I'm particularly interested in stories of failures involving your assessment.

Scenarios might be any of the following (but this is not exhaustive):

Did you have a fight to get your GP to agree to refer you?
Did you get sent to the wrong department - e.g. general mental health services not qualified to assess?
Did you see a clinician who told you there is no way you could have an ASC for ridiculous reasons?
Were you misdiagnosed?
Did you face resistance to being given a diagnosis for any reason?
Did the clinician ignore bone fide supportive evidence you gave?
Did you get a failed diagnosis and have to invoke a complaint?

Edited to add another possible scenario: Were you a female that was told you couldn't have AS because of being female/female presentation characteristics were ignored and you were told you didn't meet the diagnostic criteria?

Hi, i'm not sure if i'm welcome to answer this, as I did not self-diagnose before my assessment, and think the NHS handled my assessment well, but I was just interested to see a thread about the UK/NHS. I hope you don't mind.

I wasn't referred by a GP, and did not ask to be referred, as I didn't know I had/might have an ASC/D.
I was assessed by someone from general mental health services, but they were qualified.
No.
No.
No.

Overall, I think my assessment and diagnosis were very well handled, especially as I/my relatives etc. did not suspect ASC/D beforehand, it was 'detected' while I was being seen by mental health services for other conditions.

I hope that not too many people feel they have been failed by the NHS in this respect, and i'm sorry for people who have.

Thanks for your reply, everyone is welcome to reply - although I am specifically looking for response where people did have a problem. It doesn't matter if people self-diagnosed before they went to the NHS or not, believing you have or might have a condition isn't necessarily the same as self-diagnosing.

The questions were just to give an idea of the different type of scenario that might prompt people to respond, not intended as a checklist to respond to. I will tweak the wording to ensure everyone understands.

Thanks for your input.

Answers in chronological order?

No.
Yes.
Yes.
Yes.
Yes.
Yes.
Yes.

Fortunately though, my complaint was eventually heeded. I sent a brief letter to the mental health unit I was referred to stating that I didn't agree with the conclusion the first psychiatrist came to, and asked to be seen by a different clinician.

The second clinician agreed to refer me to the N.A.S., and when I finally did get diagnosed I was told by Judith Gould and Lorna Wing that they were in no doubt at all that I had AS, and that my case was typical. Adding insult to injury, when I did finally get a referral the NHS botched it and referred me to two separate specialists at once! Nonetheless, having my AS confirmed by two specialists rather than one did add weight to my case somewhat.

Mind you, this was after having to re-register with a GP in the village where my parents live after being refused a referral in London by three psychiatrists in a row - none of whom even knew what AS was, but nonetheless still seemed to think they were qualified to tell me I didn't have it.

Fortunately the GP I'm registered with now is part of a small practise in a village with a population of around 4,000 - so they can afford to devote time to individual cases. My complete lack of success in getting a referral when I was registered with a GP in London left me with the feeling that if you live in a large city in this country and you have a mental health issue, you're well and truly up s**t creek without a paddle.

Did you have a fight to get your GP to agree to refer you? I wouldn't say I had a fight but I had to have several people advocate on my behalf.
Did you get sent to the wrong department - e.g. general mental health services not qualified to assess? For the actual AS referral I got referred to the right place, but before they started to consider AS as a possibility I was passed around between MH services for several years.
Did you see a clinician who told you there is no way you could have an ASC for ridiculous reasons? When I was a teenager I asked my GP about AS. He told me that if I had it I would have been diagnosed as a child and that on the list of possibilities it was very low down.
Were you misdiagnosed? Not in the AS assessment, but before the AS diagnosis I had the generic "anxiety and depression" combo.
Did you face resistance to being given a diagnosis for any reason? I don't think so.
Did the clinician ignore bone fide supportive evidence you gave? No.
Did you get a failed diagnosis and have to invoke a complaint? No.

To sum up, I first went to my GP at the age of about 17 with concerns about AS but was dismissed and put on medication and referred to counselling. I felt like a failure, a terrible person, and couldn't understand why I wasn't "getting better". I knew deep down that I wasn't sick but nobody seemed to care.
After several years of failed therapy and ineffective medication, I got passed to a new psychiatrist who asked if I'd ever been tested for AS. He referred me to a testing service, I finally got an appointment, and was diagnosed with AS. In light of the diagnosis I was discharged from MH services and am nearly completely off the medication.

Did you have a fight to get your GP to agree to refer you?
Previous GP's -
Yes, not only for AS but for many things.
My first GP was great for treating colds but didn't take womens problems or mental health seriously. As a result I went 7 years with endomitriosis/cystic ovary symptoms before it was looked into. He would just give me paracetamol despite my saying that it didn't work. My inquiries about possible bi-polar at the time where met with being sent to blood counts, and I was told that I was not depressed despite clearly being depressed because I hadn't stopped eating.
That GP then deleted my medical records before my next GP received them. The next GP never received them, so I've had to start from scratch.
Next GP, this is when people around me started opening up about my possible ASD. Despite having experience with it he couldn't provide me with any useful contacts or get me any help or diagnosis. Also no help for depression.
Moved to a different area. First GP I saw listened to my request for a referral and said nothing, and did nothing about it, seen a different GP since.

Major hospital fail! Ran away during a meltdown in just a t-shirt and thin trousers. Came out of meltdown very scared and depressed, and hoped to freeze to death in a pub garden. (It can't have been more that 1c that night)
Was talked round the next morning by the cleaner, went to the hospital. did they check my health? NO. They sat me in an isolated room for ages then took me to a ward on the other side of town, where they told me the couldn't do anything for me and I have to walk the 3 miles home.

Did you get sent to the wrong department - Various times to the Pathology lab for a blood count (childhood GP)

Did you see a clinician who told you there is no way you could have an ASC for ridiculous reasons?
The same person who told me that I did not qualify for NHS Counseling because trying to freeze to death doesn't count as suicide. (Post-Meltdown incident) Lucky he wasn't diagnosing me.

Were you misdiagnosed?
No

Did you face resistance to being given a diagnosis for any reason?
My current GP sent my referral but the department responsible did not act on it, then claimed that they had lost it months later. They never attempted to contact me despite her complaints to them about the lack of contact I was getting from them. They often lied to her that they had contacted me.
Eventually it took being threatened with a serious complaint to the primary care trust to get them to act on my referral.

Did the clinician ignore bone fide supportive evidence you gave? no

Did you get a failed diagnosis and have to invoke a complaint? no

My current GP and the diagnostic specialist I am seeing know of my past bad experiences with the NHS, and seem to be doing a very good job of proving to me that some of them can actually do their job properly, even if they are a rarity.
I'm incredibly thankful for their support and am currently waiting for the formal paperwork since my DISCO interview (I have been assured that I definitely have Aspergers)

Did you have a fight to get your GP to agree to refer you?
Yes. I had to insist.

Did you get sent to the wrong department - e.g. general mental health services not qualified to assess?
I was sent to the correct Department but to someone who had no experience of diagnosis of adults. At the initial consultation she said she didn’t know of any tests for adults so settled on applying one designed for children. Despite me telling her that tests for adults existed and she could find one to use before the assessment appointment took place, I was assesed with a test designed for children alongside her taking my personal history.

Did you see a clinician who told you there is no way you could have an ASC for ridiculous reasons?
When I returned to my GP practice to ask for a second assessment on the basis that I thought I did have some Aspergers traits and I wanted to be assessed by someone able to diagnose adults the GP said
“I’ve had 20 years’ experience and I can see at once you are not Autistic”.
He also said I should "stop looking for excuses and try to make the best of the diagnosis I had been given".
After that I did not mention I was severly depressed but instead decided to get another appointment with a different GP to address my needs.

Were you misdiagnosed?
I believe lack of experience caused the initial Assessor to fail to consider that a person with Aspergers (I suspect) does not clearly have all the criteria for childhood Autism, by which I was judged. I was told I had some understanding of theory of mind and of metaphor and so could not be considered AS. I felt other evidence I presented was dismissed too easily.

Did you face resistance to being given a diagnosis for any reason?
Yes. The assessor felt since I was coping well enough to live (semi)independently a diagnosis would bring me no benefit, as I didn’t qualify for any further help (funding had just been cut).

Did the clinician ignore bone fide supportive evidence you gave?
She did not consider that I had learned some social graces over time and had been able to develop a “normal” façade, though I explained how exhausting it was to maintain. She attributed my social difficulties as a result of my family history. She attributed depression and low self-esteem to unemployment rather than my argument that my underemployment and depression were due to social difficulties caused by Aspergers traits. She passed over the results of the online tests I had done which all showed a high degree of AS.

Did you get a failed diagnosis and have to invoke a complaint?
Last November I asked for a second assessment. The first time I asked the GP interrupted and shouted me down. The second GP promised a referral but then “forgot”. I was then told that a referral would be made but nothing was done. However, I did get a course of CBT offered through which I hope to be referred on to the appropriate Department. If my request is turned down then I am considering a complaint.

Edited to add another possible scenario: Were you a female that was told you couldn't have AS because of being female/female presentation characteristics were ignored and you were told you didn't meet the diagnostic criteria?
I was initially assessed by someone unskilled in diagnosing adults. I very much doubt they had the knowledge to comprehend the difference in presentation between male and female adults, though it was not explicitly stated that I could not be AS due to being female.

Wow dunya, you poor thing. You do have the right to an assessment, and you certainly could complain on the basis of all that.

yes : Did you have a fight to get your GP to agree to refer you?
yes : Did you get sent to the wrong department - e.g. general mental health services not qualified to assess?
yes : Did you see a clinician who told you there is no way you could have an ASC for ridiculous reasons?
yes : Were you misdiagnosed?
yes : Did you face resistance to being given a diagnosis for any reason?
yes : Did the clinician ignore bone fide supportive evidence you gave?
no : Did you get a failed diagnosis and have to invoke a complaint?

worst thing is that having gone through all of that to get a diagnosis, barnet mental health trust say that they will no longer deal/help people with ASD, so i am on my own again and even though in crisis i'm expected to harass my gp to then harass the main trust to get funding to go to the maudsley, i am lost....

My answer would be 'no' to all of those.

One of the GPs at my local practice referred me to a psychologist at the local mental health dept. I had two sessions with her and some standard tests. She then referred me to an Adult Aspergers Unit that was just being set up in the county (Worcestershire). I had two lengthy sessions with the psychologist there (attached to a specialist autism unit in Sheffield) before being diagnosed two years ago. There was even a post-diagnostic session. All of this took about 18 months. There was a wait before the Adult Aspergers Unit was up and running.

I was never sent the wrong way or had to fight for anything. Perhaps I was very lucky to seek a diagnosis in the right place at the right time. Last time I spoke to them the unit had diagnosed over 200 adults in Worcestershire, about 80% of those referred to them.