Denied assessment by community mental health team

I'm very sorry to hear of your experience. 

According to the NAS: "If you have a complaint following the diagnostic assessment or at any stage in the referral or diagnosis process, you can follow the complaints procedure for your local area. Complaints should usually be made within 12 months of the issue arising or being aware of the problem."

More information and complaint-related links for various parts of the UK here:  Health services 

Hi, not sure if you'll see this but I was wondering how did it go for you? I'm in exactly the same situation as you described. I'm 44, was denied autism assessment by local NHS team earlier this year. I didn't think it was very professional from their side. But they decided after 30 min interview that I was not autistic just some other mental issues probably. Was pissed off by such attitude from them. They didn't even look into my case properly. Cu*ts! Felt stupid, neglected and blah blah blah but after some time decided to contact my GP again to ask if they can refer me through RTC pathway. I was told I had to book an appointment again for this to see my GP just to find out that I am not eligible to go RTC way as I have been assessed already by the NHS. What a load of bollox. It wasn't even an assessment. The thing that makes me most furious in all this situation is - why pretend that there's a way to get assessed/helped but actually it's just BS!!! Waste of time and very disappointing. Excuse my rage but I still don't think it was fair attitude and I am not willing to accept this. Just wonder if there's some other way around this situation legally, to complain or ask for a second opinion which I don't believe they will offer me anyway. Not sure what to do next tbh

If you live in an area where the local CCG has an iron-grip on services they may want to control your access to services.

Since 2014 the law was changed for  psychological and developmental issues: you can get your GP to refer you out-of-area to a centre of excellence/expertise where you can get a fair assessment.

The NHS webpages on 'Patient Choice' www.england.nhs.uk/patient-choice/ and this www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/  and also http://gplaw.co.uk/chapters/item/28-chapter-11-a-guide-to-the-law-on-patient-choice relates to the law.  You can also look here https://improvement.nhs.uk/home/ for NHS Improvement who will see if you are being treated fairly

Ask for a second opinion if your GP refuses to cooperate: your GP practice should be promoting 'Patient Choice' and the Surgery should have leaflets and help you in a friendly manner. www.england.nhs.uk/patient-choice/elective-care/choice-materials/  ...

Where are you in UK?

I had the same thing from the autism assessment team. There were actually things in my notes that did suggest autism, which a therapist found a couple of months after the refusal, when I was assessed for psychological therapies by the same NHS organisation. But I decided to go private for my assessment because although I could have been re-referred I couldn't trust that the service wouldn't be as prejudiced as they'd been when I was referred the first time. I was diagnosed in July after more than a decade of using mental health services that couldn't/wouldn't see my autism as being at the root of my difficulties.

Hi, you could do an online test and take it into your doctor, that's what I did anyway and I also wrote down other factors of why I thought I had it.

You certainly shouldn't feel stupid or rejected; there are lots of replies her and you have had lots from your local support group.

I strongly suggest doing a self test as described and taking the results to your GP, but often there is weeks to wait for an appointment with them!

Let us know how you get on once you’ve digested all the information.

I just watched ‘Spectrum Live’ from the NAS website section looking at getting diagnosed. The NAS helpline was mentioned a couple of times as somewhere to get advice on difficulties with accessing assessments. They discussed different scenarios and had questions from the audience about the diagnosis process. You might find it easier to look at the video then tackle all the overwhelming advice you been given:

https://www.autism.org.uk/about/diagnosis/adults.aspx

Remember you have found the right place to get advice from other people like you; people who understand your situation and can hold your hand (through cyberspace).

 Best wishes x

A quick update..

I have been in contact with a local support group which have put me in a contact with people who are in or have been in my situation. I’ve been given a lot of overwhelming information and it will take me a while to be able to process it all. 
I’ve been told that I shouldn’t give up, for myself, I feel very rejected. It was so hard for me to approach my GP in the first place. I will go back to my GP next week and will keep you all informed.

Thank you so much for all of the replies. I have to admit that receiving the letter has impacted my ability to function. Like I said, I feel stupid and rejected. 

Speaking to your GP about getting referred to an autism specialist might be easier than asking the CMHT to reconsider, as sounds like your GP is being more supportive.

My GP was similarly happy to make a referral for assessment but was uncertain about whether to refer to psychiatry or psychology - he ended up referring me to the CMHT but I was lucky in that the CMHT basically concluded they weren't the right people to make an assessment and passed it on to the appropriate team.

Yes, I fully accept as an NHS worker and service user the NHS is not perfect all of the time...sorry you’ve had a bad experience x

I suspect you do not have a good service for autism management in your area and even if diagnosed the service may be poor. 

So consider why you would want to know

Is there a local autism/aspergers self help group

May be try doing the online tests to make the diagnosis yourself

https://community.autism.org.uk/f/miscellaneous-and-chat/1295/online-tests---aq-eq-sq---from-the-arc-website

ItsMyMind said:

CCGs take patient contact seriously and will deal with your enquiry professionally

Unless their approached for a continuing health care assessment...in that case ive heard them get more than one person off the phone in a not very professional manner.  They probably think oh dear someone wants free help and its going to cost us so pass them back to social services to pay for their care (even if there obviously non social related)

Hi

I’ve worked in various parts of the NHS so have a bit of an insight into how some services are ‘commissioned’. I wonder if it would be worth your while contacting your local Clinical Commissioning Group (CCG) and asking to speak to the ‘Lead Commissioner’ or ‘Project Manager/Lead’ for Adult Mental Health. You can then ask specifically if your area has a dedicated service for adult assessment for ASD and what the correct process is for ‘accessing’ it.

There are specific NICE guidelines explaining to CCGs how adult ASD assessment services should be arranged and implemented. There will be a specific ‘referral pathway’ which CCGs should ensure is being followed to make sure patients have equal access and fair treatment.

Once you know the pathway you’ll be in a position to judge whether your GP followed the guidelines, if the service you were referred to was the correct one (doesn’t sound like it was to me) and whether your case has been dealt with correctly.

ASD assessment is a ‘specialised service’ so unless your Community Mental Health Team have a dedicated ASD team (I might be proved wrong but it’s very doubtful they do) they can’t have been the correct service to deal with your referral.

Most ASD assessment services will be commissioned to serve a large population area because it’s so specialised (e.g. where I am there are two commissioned services to deal with adult ASD assessment depending on whether you live in the East or West of the county). The staff required to undertake the assessments are very specialised and need to be clustered together to serve the large area. It sounds like your GP might have innocently assumed the Comm MH Team was the correct service.

Try approaching this from a ‘I’m just checking’ or curiosity point of view rather than having a rant from the off. CCGs take patient contact seriously and will deal with your enquiry professionally - it doesn’t have to be a complaint at this stage.

I recently contacted my local CCG myself to get the correct process so I could pass it onto my Practice as the GP and staff had no clue how to handle my request - it was all done very amicably and now my Practice will know what to do for the next person.

I first went to my GP in July and after all the two-ing and fro-ing I just heard this week (end of Nov) that the referral as been sent to the correct service - that’s my experience as an NHS insider so I hope this gives you a bit of a short cut through NHS processes.

P.S. the reason I’ve put some phrases in inverted commas is because they are all NHS-speak which will mean things to CCG staff

Best wishes

wow great CBT team! Mine was useless, gave me a phone number for the local Autistic society and made me so anxious i had to leave the room and had a meltdown in the toilet. I never went back after that

I was originally diagnosed GAD many many moons ago when I was having a meltdown and hitting my head repeatedly on the wall and flapping my arms. The psych didnt even see me as he was too busy. Ah the NHS lol. Apparently it was one of the workers that relayed my problem to the psych over the phone. As if thats a diagnosis haha. Anyway I believed it until my 2nd huge meltdown (usually in the saftey of my room or a room that no one can see me in) but i was completly over whelmed to the max. It was then thought ah okay maybe ASD but still no diagnosis at that time. 

Someone who knows for sure will be along to confirm but I suspect you were referred to the wrong team? Autism isn't an MH condition and as far as I know MH teams aren't particularly known for spotting it. If you're up for the fight, have you looked at the NICE guidelines?

Thank you so much for that reply, the letter has got me questioning myself!

I’m not going to pass this without a fight. I’ve been dealing with anxiety all of my life! I went through CBT about ten years ago but the staff were awful towards me, one even stating that there was nothing wrong with me, even though I couldn’t get to an appointment without knowing that my other half was waiting in the reception for me! 
Im feeling quite let down, but I want the assessment, I feel it will help me to understand myself a little better.

Im glad you got the right help!

Thank you for the reply, I am currently writing a letter asking them to reconsider their decision. I feel like they should at least speak to me before making such a decision. I feel that all my years of masking are now working against me.

Im not going to give up though, I feel like getting the assessment will prove their decision wrong. I’m going back to my GP this week and will speak with her about it.

That's ridiculous, I would have thought it is impossible to tell if someone is autistic of not without having interviewed them face to face

 was diagnosed last year

I initially saw the doctor because I was suffering with long term anxiety issues.

He referred me to the NHS mental health team(Wiltshire IAPT) for CBT therapy

It was during the CBT sessions that they picked up on the probable autism as the root cause of my anxiety. I think the CBT therapists are now trained to spot autism as it is now seen as responsible for a lot of mental health conditions

They then submitted a detailed report to the specialist autism service in my area and eventually had an assesment leading to a diagnosis

If I were you I would go back to your GP and ask for CBT therapy (I think the NICE guideline is to see patients within 6 weeks) and follow the route I took

sorry to hear you're having problems. its no surprise though.sometimes seems to me that professionals prefer to label people mental than autistic. Possibly because they already have a protocol to deal with adults with mental health issues but nothing setup to help people with autism.

If your GP was willing to send you for assessment they probably had one or two reasons to do so. I would get in contact with them and ask. People that haven't met you couldn't make an informed opinion or assess you. Even with GP input that would be near impossible.

If they have suggested you go see a shrink and get treated for anxiety and depression you could consider agreeing to an appointment IF and only IF the shrink has had autism training and is knowledgeable. That way they may refer you to someone for diagnosis...or if you are confident that their not just useless narcissistic know nothing know all's. Then maybe they will help with any anxiety and low mood you experience AND maybe you will think OKAY autistic or not i feel alright now