UK - NHS ASC Failures: Please tell me your stories

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My GP agreed to refer me. He (on the advice of his trainer - he's a trainee GP) refereed me to CMHT. (community mental health) They screened me, told me there's a high chance I have ASC and discharged me. I found out months later that I wasn't assessed properly. He then admitted "I have no idea who can assess you". Have had to now put in a complaint about this.

Was told that there's nowhere that can assess me. GP spoke to the child development centre to see if they have any ideas and they don't.

One GP I saw refused to refer me on the basis that they know I've got ASC; (ok, my sister who is a trainee psychologist can tell you that) but because you've either got it or you haven't, they won't do anything more. Is it wrong for me to want an actual diagnosis, rather than "on the spectrum somewhere"?

My parents had to fight to get my brother diagnosed. They were told there's nothing wrong, it's their fault (they have 3 children and one turned out normal...) and that he has Schizophrenia.

OMG. Keep these stories coming guys. I'm starting to feel like petitioning someone in government.

oh it's worse than that after 2 years i finally forced them to pay for the assessment at the maudsley

which sadly for me said i was ASD

the irony now is that i can no longer get ANY help from the barnet mental health trust as i am ASD

so i have nowhere to go other than once again trying to ge my GP to hassle the main trust to pay for treatment at the Maudsley, which is never going to happen and certainly not in the short term

once again i am off work sick with the usual bullying/depression/anxiety and getting no help from anyone and that include the NAS

it's a shame as i'm good at what i do ( software ) and so a waste whilst i sit at home trying to not kill myself...

seems like the NAS now have a conflict of interest as they seem to be involved in providing services for the councils/nhs

so i wonder who in the UK is now fighting for our rights

i could be wrong as i freely admit i am not in a good place mentally and feel all are against me, which of course in many cases is true, so i could be wrong about the NAS...

bump.

Despite a life of being seen as a bit wierd and unable to maintain friendships, it never occurred to me that I could have AS. Then a couple of years ago something terrible happened and I got in a very bad state mentally. I asked for help, including turning up in A&E in what I would now identify as meltdown. I was treated as scum. I complained and received an apology eventually after following up the complaint on several occasions. My GP practise was condescending in the main but here it is very difficult to get an appointment, especially with the same GP. On one occasion I had a full blown meltdown with a GP who clearly hadn't listened to what I was telling her. On another I got very upset with a receptionist who again treated me as if I was scum. I left in tears. I even tried the Samaritains who told me I wasn't talking about how I felt (I thought I was). About 18 months after asking for help I had to see someone who was a sort of gatekeeper for counselling and then finally saw a counsellor who did not know what to do with me and offered me a place at a psychotherapy unit specialising in people with PD. I would not have gone there under any circumstances!
However, in the meantime, I was dealing with a person with AS in a professional capacity and did some research into AS to help me understand and found a list of female AS traits and it was a real thunderbolt moment.
From there everything changed. The counsellor was able to refer me direct with permission from a psychologist and I got an appointment with the specialist unit within a couple of months. Had an interview with a lovely psychologist and got a diagnosis.
I am aware, however, from the work I was doing, that there are no specialist services for adults with AS in my area depite the autism act and strategy. I have been offered specialist counselling from the unit which is a very long way from home but this is subject to funding being agreed.
If I had not met the person with AS and done my homework, I would now be adrift, having rejected what mental health services had to offer and being very upset that I could have a personality disorder.

I had no problems with the GP, he was lovely and very understanding. I had taken along a lot of test data to show him - the Aspie quiz, another online test I had done, various personality tests and my WAIS-IV that a career advice psychologist had done etc. The GP agreed to refer me straight away and even dictated the referral letter into his dictaphone while I was there in the room.

The psych at the primary care trust asked me a lot of questions in an hour long interview, and at the end of it, she told me that it looked like I was definitely on the higher functioning end of the autistic spectrum, "probably Asperger's", although she thought that I would probably need specialist testing to confirm the diagnosis and determine exactly where on the spectrum I reside. I have no complaints about her either, she admitted that she was new to the borough and didn't know exactly how things worked, and she recommended that I go back to my GP and ask for a specialist referral, which I did.

After I had phoned up and chased the GP's surgery a number of times, I suddenly got a copy of a letter from the senior consultant at the primary care trust to the GP's surgery saying that the diagnosis had been confirmed and that our health authority had no provision for ASC's as none were commissioned.

So far as diagnosis and testing is concerned I'm happy to leave it at that, as my workplace have now got what they wanted to see to refer me to the occupational health. Specialist testing would also involve my parents, and it is unlikely that they would co-operate as my mother is still strung out on this idea that my issues arose from physical damage due to childhood illness, and she thinks the doctor has made a mistake.

The NAS have been worse than useless in providing advice, possibly because the nature of my query was due to the employment law aspect rather than purely a request for information about ASC's.

I don't have anything too negative to say about the NHS, in relation to my daughter's diagnosis. The only thing that was a problem was that, after first being fobbed off by the school, I went to my GP and he said that she was just really clever. He had no intentions of following up on my concerns, but advised me to do everything via the school, if we were still concerned. So, then I went back to the school, and this time they agreed that she probably was on the spectrum (this was just a few months after the first time I spoke to them about it) and the assessment process started. Not knowing the process for assessment, I thought the GP could have helped, but, had I been relying on him, my daughter wouldn't have gotten assessed.

Since the assessment and diagnosis, there has been no services whatsoever. If we feel we need any, we have been advised to ask via our GP. So far, we've not asked for any services, but OT wouldn't go amiss, I think. So, watch this space.