Has anybody had trouble accessing NHS treatment after a private autism diagnosis at Lorna Wing Centre?

Apologies for the long post title.

I'm going to have an assessment at the Lorna Wing Centre, privately funded because my GP says it won't be possible on the NHS.

My GP advised me to check whether I would still be eligible for NHS autism treatment (e.g. therapy) after a private diagnosis.

I asked the LW Centre about this, and they advised me to check with my local service providers.  I'm going to email them now, but I don't know if it will be possible to get a clear answer.  


I was just wondering if anyone else has had a private assessment there, and then had any trouble accessing NHS treatment?  I wouldn't have thought it would be an issue, given the LWC's reputation and the fact that they also accept NHS referrals, but I want to find out if I can.

Thanks in advance.

  • Hi Gerty,

    Thanks so much for this.  I will definitely look into these courses.  Have you ever taken one of them, and if so, how did you find it?

    Thanks for the kind thoughts.  It is really helpful that you've identified that trait in me: wanting things to be black and white, and looking for clear answers where they may not exist.  Now that I think about it, this is exactly what I do a lot of the time.  In fact, I think I will start a separate post on it, as I think it could be a good discussion topic.

  • https://www.autism.org.uk/what-we-do/professional-development/training-and-conferences

    Ignore that it says professional development, you can still do the courses. They are not free but not too expensive either. You can learn how people deal with daily life with autism.

    Your answers are very logical, consistent, and thorough, which is very positive and often associated with autism. You are looking for clear answers where they may not exist. Nothing wrong with looking for answers, anyone would, but part of autism is wanting things to be black and white, when the rest of society accepts grey, and getting extremely anxious as a result. Learning about the effects of autism might be a step towards tackling anxiety. You also come across as very intelligent by the way, which is nothing to do with autism but I believe it will help you eventually finding the solution.

    I am not an expert but have family and many work.colleagues on the spectrum, most undiagnosed in formal.sense.

  • Hi Gerty,


    Thanks for your message.  I am still very much learning about autism.  I was wondering what it is about my posts that comes across as autistic?  I'd be very interested to know.

    I agree with you about ASD not needing treatment - in fact I don't like the 'disorder' part of the title ASD, it sounds as though they are saying that there is something wrong with us.  I don't know how others feel about this.  I prefer to just say 'I'm autistic'.  

    But I agree with you about wanting treatment for anxiety.  In fact, late last year, before I started looking for a diagnosis, I had online therapy on the NHS for stress and anxiety.  At the end of this therapy, they told me that I clearly had deeper underlying issues, and therefore they were stepping me up to the next level of therapy (longer-term CBT) and I have been on the waiting list for this for several months.  I recently contacted my initial therapist to tell her I thought I was autistic, and asking if the CBT that I was on the waiting list for was relevant any more, or whether I should instead look for specialised therapy for autism.  She told me that they don't do specialised therapy for autism, but that the CBT offered could focus on the difficulties that I have because of autism.  So I am still on the waiting list for that.  Hopefully the therapist I eventually see will be open and accepting of the fact that I feel almost sure I'm autistic, and hopefully s/he will know something about autism and be able to help.

    Thanks so much for telling me about the training available on the NAS website.  Where on the website can I find it please?

  • Ultramarine,

    Getting diagnosis of ASD seems very complex I am no expert but just from reading your detailed posts I would hazard a guess you are somewhere on the spectrum!

    I was also wondering what 'treatment' you would expect from the NHS after diagnosis, as ASD is a part of your personality and not really something that needs treatment.

    What does need treatment is the anxiety that often accompanies ASD. The chances of getting treatment for anxiety on the NHS are  low due to overloading and current high levels of anxiety in general, but it would be possible to ask for help with the anxiety even without an ASD diagnosis.

    If.you want to know more about autism there is training available on the NAS website, it may give you strategies that might help you.

  • Hi Turtle,

    Thanks very much for this helpful post.  

    Regarding holistic approaches, I started meditating around four years ago, using the Headspace app.  This was before I knew I was probably autistic.  I think meditation is one of the most helpful things I've ever learned to do for my mental health, (regular exercise is the other one) and perhaps others might find it useful too.  It really helps me feel less anxious and has improved my sleep (I've struggled with sleep problems for almost a decade and I've heard that many autistic people have this problem).

    I've also found that talking to other autistic people and hearing what they have found to be helpful can be a very good thing to do.

  • Hi Trei,

    Thanks for your ideas.  I did start a post on this forum a few weeks ago asking about post-diagnostic support, and had some helpful replies, but haven't yet looked into it seriously because the process of applying for the assessment itself was quite draining and overwhelming, writing about my past experiences and so on.  Now that I've completed all the paperwork and am waiting to hear back from the LWC, I can start researching what support might be available.  I wonder if there is anywhere I can find some kind of help even before an official diagnosis.  I'm sure that private therapy can't be the only option.

  • As far as I can see, from doing my own research and having read countless individual stories on this forum regarding diagnoses and post diagnoses support the options seem to be, very roughly speaking, limited to :

    NHS route :

    1. very lengthy waiting times for an assessment.

    2. very lengthy waiting times and maximum number of sessions ( 8 I think ? ) for CBT ( phone talk during covid ).

    3. Prescribed drugs.

    Private route :

    1. Expensive but much quicker assessment, possibly more tailored to the individual. 

    2. Private options of further support post diagnoses - zero - unless you or your company are prepared to pay for a Phycologist, specialising in ASD starting @ & £150 + per session (you would need to check if this is phone talk or face to face atm ).

    3. Get your private assessment and go onto the NHS waiting list for talking therapy or prescribed drugs as above.

    So your choice is very much dependent on your individual needs including your quality of life, employment, unemployability,  traits, financial situation etc etc. 

    I understand many will need a diagnoses for all different reasons but I think I am coming to the conclusion, as far as treatment is concerned, that your money and energy would be better spent on more holistic approached such as Yoga, exercise, music, dance, movement, contemplation, meditation, cold water swimming etc etc  and in general, feeling comfortable and safe in your own body. 

    I say this as I have never heard many success stories from talking therapy or prescribed drugs for ASD, Trauma, ADHD etc etc. 

    Talk is cheap these days. 

  • Hi Trei and Martin,
    The Lorna Wing Centre don't require information from someone who knew you as a child.  Here is what it says on their self-referral form (I've copied and pasted it):

    Please identify one or more adults who know a lot about you. Preferably someone who has known you since childhood like a parent or sibling and who might be able to participate in the assessment. If this is not possible another option is a current partner or friend you have known for a long time.

     The person(s) you identify should be someone you are comfortable with us contacting or joining in the assessment, if we feel this is necessary. Ideally, they would be able to provide information about your early development and/or current behaviour patterns and skills.

    Also, they gave me a separate form to give to this other person to fill in, with questions about my childhood, but on this form it said that I shouldn't worry if there's nobody I can ask to do this, because they will take time to help me talk about my early life and development at my assessment.

  • The requirement for a witness of childhood, if absolute, is effectively age discrimination. I wonder if that has ever been pointed out to them. 

  • I understand completely. Covid added a year onto my wait. I also had the same experience as you with my GP. I had to chase him up. Then I was turned down due to insufficient evidence. Turns out he hadn't sent in any of my evidence to back up the need to assess. It added at least 6 months onto my wait. 

    If getting the diagnosis is important, just to know & have confirmed what you suspect, then go to Lorna Wing. I believe they use the Disco method, which is more geared towards women. One thing I did notice, when I researched it a while ago, was it appeared they wouldn't make a full diagnosis without information from somebody who knew you as a child, which for me is not possible. I wasn't prepared to spend money on what was not a full diagnosis. It may have changed, but worth considering if this is something that also affects you.

    As far as I am aware there really is no post-diagnosis support on the NHS. It may be worth making a post to see if anyone in your area gets any kind of ASD specific support under the NHS. I'd be surprised if there is anywhere that does. Counselling is available anyway via NHS, but its limited to a certain amount of sessions & the current NHS obsession with CBT is not helpful to those with ASD. 

    You may as well get on the NHS list for ASD (& potentially ADHD too), as there is a lot of overlap. It will make it easier to get your NHS dx once you've got your private dx. They actually put you on a slightly shorter waiting list where I live if you have a private dx already. Also research private options for the sort of ongoing support you require. Nothing to stop you using that asap. Good luck.

  • thanks for this  Thumbsup

  • You'll have to look on google for your right to choose options and fill out the required forms and hand it to your GP if not they will not inform you about your right to choose options. 

  • Sorry aidie, I only just saw your message. There are various ADHD medications. I copied & pasted this from The NHS site. They are often stimulants, which have the opposite effect on people with ADHD than those without. This is why people frequently self medicate with energy drinks to help themselves focus. I always wondered why I didn't get the buzz or wake up feeling that other people speak of from coffee etc. It was interesting to find out why.

    It is possible to get a private dx of ADHD which involves shared care with your GP. Usually the private practitioner will not sign you over until you are stabilised on meds, so its not just the assessment to pay for. Its follow up & many months of private prescriptions until that happens. Hence its much cheaper via NHS. Its just the wait can be ridiculous.

    Medicine

    There are 5 types of medicine licensed for the treatment of ADHD:

    • methylphenidate
    • lisdexamfetamine
    • dexamfetamine
    • atomoxetine
    • guanfacine
  • Hi Trei,

    Thanks for warning me about this.  I need to do more research on what kinds of post-diagnostic support there might be available.

    When I asked my GP how long the waiting list would be at the Maudsley, she said 'they said the waiting list is really, really long' and when I asked if she could say specifically, she said 'at least six months'.  But I suspect it could be a year or more, because of the pandemic and from reading about other people's experiences.  I really want to get an assessment as soon as possible if I can.  I don't like the idea of an indefinite wait, without any indication of how long.  The other thing is that when I emailed in my completed application forms to my GP, I waited three weeks for her to reply, and then when I contacted her, it turned out she hadn't seen the email.  I just don't like the feeling of being disempowered and dependent on people who don't see the situation as urgent as I do.  

    Maybe I'm worrying unnecessarily, but I just feel that I want to get the best diagnosis I can from people who know a lot about diagnosing women.   I guess it's a personal choice for everyone, depending on financial resources and many other factors.  

  • Hi Blue,

    Thanks for your reply and thoughts on what would be the best thing to do.

    I can understand the possible benefit of staying on the NHS waiting list, but I don't want to do this in case I get two different diagnoses.  For example, if LWC says I am autistic, but the NHS assessors say I'm not.  That would leave me forever in doubt about whether or not I'm autistic, which psychologically I would find very difficult.

    The Lorna Wing Centre sent me this information:  

    "Please note that the Lorna Wing Centre does not hold a block NHS contract with your local Clinical Commission Group (CCG) and therefore we will not be one of the service options under Patient Choice. You will therefore need to discuss a referral to our service with your GP.

     If your GP agrees to refer you to our service we would need a completed referral form from yourself and a referral letter from your GP which needs to state clearly that they support the referral and will apply for an Individual Funding Request (IFR) through your local CCG.   Your referral will then be reviewed by our clinical team and we will confirm acceptance of the referral to you and your GP, if it is appropriate for our service and provide the costings.  Your GP will then be required to apply for an Individual Funding Request (IFR) on your behalf through the CCG.  If funding is agreed by the CCG we will require confirmation in writing from them before we can proceed with providing an assessment for you."

    I went through this process and asked my GP if they would refer me to the LWC through the NHS, but my GP said that individual funding requests are extremely hard to get for anyone, and in my case it wouldn't work because I had already been offered the option of being referred for an NHS assessment elsewhere.

    Thanks again for your thoughts.

  • Stay on the NHS waiting list while perusing other options. In the case you get a private diagnosis that is not accepted by your local authority and other establishments. you'll still be on the waiting list for the NHS one. If you do come across the barrier where the professional diagnosing you isn't taking you seriously you can request a second opinion. But i do recommend bringing family or close friend who can support you during the assessment as male professionals are less likely to take you seriously because of the gender gap. 

    You doctor has lied to you about other option. Their are right to choose options in your area. your doctor often doesn't spend enough time finding the information out.        

  • I can understand wanting to go private. Where I live the waiting list is incredibly long. I've already waited heading towards 2 years on the list for both ASD & ADHD assessments. I believe the ASD list is marginally shorter. 6 months is amazingly quick. You have nothing to lose by going on that list & going private if it doesn't work out.

    In an ideal world, we'd all like the types of support you describe post dx and they'd be available on the NHS. Unfortunately, unless you live in one of those rare areas where there is post dx support, then you're better off spending the money you'd spend at Lorna Wing on private therapy & getting the NHS referral at Maudsley, who I believe also have quite a good reputation.

    When my youngest was dx she was discharged with a few badly photocopied incomplete information sheets. No follow up whatsoever. My eldest was 18 at dx & got a far more comprehensive report, which I thought was quite funny as I'd already done all the legwork by then. Again, no follow up whatsoever. She eventually went on meds for anxiety but could have done that regardless of dx. 

    I would suggest you research what, if anything, is available on the NHS post dx, because chances are its nothing & you'll end up paying privately anyway.  


  • Hello Trei,
    I hope that your ADHD assessment goes well.

    I guess what I'm hoping for is some kind of therapy or counselling to help me understand the different ways that autism has affected my life and relationships, then hopefully to help me to improve these things.  For example, I find relationships difficult and very anxiety-provoking.  Just some kind of help with that, and other things.

    I know that the Lorna Wing Centre give people a "comprehensive post-diagnostic report with detailed recommendations based on identified needs".  So hopefully, the assessment process would do part of the work, identifying the main problems and then helping me to know what I can do about them, and perhaps also where to go to get that help.

  • can i ask what they give you for ADHD because i am thinkin' of getting a diagnosis?  I know you could take meds for ADHD. Maybe your ADHD is particularly severe.

  • What type of treatment are you hoping to access post-diagnosis? In my experience, there is no post dx treatment or therapies for ASD. If you were talking ADHD I could understand it. I'm awaiting an ADHD assessment myself as my private dx isn't compatible so can't get prescribed ADHD meds on NHS. This is not an issue for ASD.