Stick with NHS diagnosis waiting list or go private?

Hi Everyone, 

I live in Suffolk so I am under the NSFT

I saw my GP back in mid-August about getting a diagnosis for ASD. It took about a month to see the health adviser and she made a referral to the Access Team of the NSFT in mid September. After a number of weeks later (around Halloween) I received a phone call asking if I was suicidal (I'm not), and that I should receive a letter or phone call within a few weeks with a date for my first appointment with the next team. Come the beginning of February I hadn't heard anything at all so I rang the Access Team to see what had happened and they said my referral had been passed onto the next team, but she didn't say it was the autism team she gave a different team name - which I now can't remember. She said she would contact them and tell them I am still interested in having a diagnosis and they would get in touch to confirm the referral within a week or so. Nearly another month on and I still haven't heard. 

I understand there is a long wait list for adults but it has been over six months and my referral hasn't even reached the autism diagnosis team yet it is still in the "triage" stage departments (not sure what else to call them). Is it unreasonable to expect this stage to have happened by now? 

The thing is I do have the money for a private assessment. Would this be better? I know it would be quicker but I have heard some services will only honour a NHS diagnosis and not a private one? Is this true?



  • Hi J, I think whether it is worth going private depends a lot upon why you want the diagnosis. I did go private, because by the time I got to that point I had self-diagnosed Asperger's and was having severe problems with anxiety (which is what set me off down the path of discovery in the first place). My main reason for wanting a diagnosis was confirmation that there was a reason for what was happening to me, I wasn't losing the plot or having some kind of breakdown, it was just that a lifetime of pretending to be 'normal' (whatever that is) had caught up with  me finally.

    My workplace have accepted my diagnosis and made some accommodations, although they didn't even ask to see it and just took my word for it. Maybe I was that obviously Aspie to everyone but me! I have also had assistance from an airline for travel since my diagnosis. What I can't tell you though is whether a private diagnosis will be useful if you need to access NHS or support services in connection with your autism, as I have not attempted to do this myself. I'm sure someone else with more knowledge of that side of things will come along to help you on here. 

    You don't say how old you are,  but if, like me, you are not a kid (!) you may well find that support post-diagnosis is rather lacking anyway, and there may not be very much available for you to access. In that case, if the diagnosis is more about "knowing what you're dealing with" and self-understanding, going private and knowing sooner rather than later may be worth considering.

  • I guess it depends on where you live. I saw a GP in late July last year and had my ASD diagnosis by early September. It's really unfortunate that some people need to wait for several months. I don't know for sure whether only an NHS diagnosis would be accepted, but as long as the diagnosis is made by a qualified individual, I really don't see that anyone would have a legal basis for not accepting it.

  • I was finally diagnosed by the NHS in December 2017, the whole process from visiting my GP and requesting as assessment took 14 months start to finish. I waited 7 months after seeing my GP before the assessment procedure started. My assessment was spread across 3 sessions of one hour each and the gap between the first and second of these was 4 months! I then had another 3 month wait after the final session for the psychiatrist to weigh up the results of these sessions and make a diagnosis. I found the waiting very stressful and ended up finding a private therapist with experience of autistic clients to help me through all this, but I appreciate not everyone has that as an option.

    Hope yours doesnt take as long!

  • What helped me was reading more about autism, particularly the stories of other autistic adults. this more or less crystallised my self diagnosis because so many were so close to my life story that I could have written them myself. 

    I've been pushed too and fro by the NHS for nearly 9 months now, and it's going nowhere fast, I've been sent for 2 different mental health assessments without any concrete diagnosis, the only thing they actually cared about was whether or not I was Bipolar and whether I pose any immediate risk to myself or others. My GP seems pretty convinced autism isn't a healthcare thing, the primary care trust doesn't offer any autism services, and the surgery seems to think autism is more related to the department of education. 

    My life can't wait for me to have an official diagnosis in my hand, I've followed the advise and wisdom of the sources of information on autism and it's helped me a lot with managing the stress in my life. I'm still really struggling but I refuse to go private as I'm convinced that private healthcare in the UK will force me onto a program where I'm committed to spending £100's per month on endless CBT.