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.

  • like all Doctors he is being careful.

    I would ask the LW for their experience/feedback from their clients

    at a guess, I think you will be fine.

  • Hi Aidie,

    Thanks for your reply.  I did ask the LWC but they asked me to ask my service providers.  I'm just emailing the last place where I had NHS therapy, hoping that they will know.  It's quite worrying and frustrating.

  • I think it ultimately depends on each provider. I know someone who hadn't been able to access certain treatment after a private diagnosis, but they moved area and suddenly they could (which could be location *or* time related, as she moved 2 years after diagnosis, so things could have changed in that time). I know that the DWP often won't accept a private diagnosis, and some educational authorities won't. There no hard and fast rule, it's a nightmare. 

  • Hi JustMe,
    Thanks for your reply.  I'm in the process of finding out who my local provider is, and who to contact.  

    If I don't have my assessment with the Lorna Wing Centre, my GP will refer me to the Maudsley Autism Clinic in South London.  They also have a good reputation but I don't know how specialised they are at assessing female presentations of autism.  I would find it worrying to wait a long time for an assessment there, not knowing whether I would be able to trust the result.  Maybe I am worrying unnecessarily, but I guess I have become very nervous from reading about the experiences of many women who have been misdiagnosed. 

    The other thing is that I don't know how long the Maudsley's waiting list is.  My GP said it was 'at least 6 months' but from reading about other people's experiences of being referred on the NHS, it sounds like it can take up to 2 years or more, and I would find that extremely difficult.  At least with the Lorna Wing Centre they tell you how long it's going to be (at the moment it takes them 6 weeks to review your application forms, then the actual wait itself is 5-6 months 'subject to change'.

    I asked my GP what would happen if I stayed on the NHS waiting list and had an assessment at both the LW Centre and the Maudsley.  If each centre gave me a different diagnosis then the NHS would be bound by the Maudsley's diagnosis.  If, for example, the LW Centre thought I was autistic and the Maudsley thought I wasn't autistic, then the NHS would trust the Maudsley's result.  But, just from talking with her about it, I realised I wouldn't be able to cope with having two assessments and getting two different diagnoses.  I wouldn't be able to adjust to it psychologically because I would forever be uncertain whether or not I was autistic.  So I think I will go with the LWC because I feel I could trust their diagnosis better than anyone else's.  I guess the reason I am so worried about whether or not the Maudsley would diagnose me is that I have had NHS counselling and therapy so many times in my life, but none of the therapists ever suspected that I might be autistic.  So I worry that I would slip through the net.  From filling in the forms for the LWC, and seeing all my autistic traits on paper, I'm getting more and more sure that I am, but I have no way of knowing what a professional's opinion would be.

    I agree with you that it is very worrying.  I thought I had done everything I need to do, and now there's another layer of uncertainty and complication.

    I'm hoping that, if I got a diagnosis from the LWC, hopefully there would be at least somewhere that would help me.  I'm not going to apply for benefits because I have always been able to work.  I just want to have therapy and counselling somewhere.

  • This is a ridiculous state of affairs, is it imaginable that a private diagnosis of heart disease or cancer would be ignored by any NHS provider? To do so for an autism diagnosis would be discrimination on the grounds of disability, and the NHS trust could be challenged on that account.

    I had a private diagnosis and the psychiatrist wrote to my GP advising a particular anti-depressant, and my GP sent me a prescription immediately.

  • Hi Martin, thanks for your reply.  I'm glad that you haven't had any trouble with this.  
    The LW Centre advised me to ask my 'service providers' if my potential diagnosis would be accepted, but the problem is that I don't know who my service providers would be.  Having never sought help for autism, I don't know who the providers of help are.  It is difficult to know the potential providers of help who I might need to contact in future, if I am diagnosed as autistic.  That's why it feels so difficult to get an answer.

    I feel like going ahead and hoping for the best, because I believe that the LWC is the best place for diagnosis, but I wish I could get a clear answer.  It would make the process calmer and less stressful.  I don't like the thought that I might not be able to get the help I need.  

  • There are various lists of independent licensed providers that are on NHS registers here: https://www.england.nhs.uk/publication/nhs-provider-directory-and-registers-of-licensed-healthcare-providers/

    Presumably, if independent health providers are licensed and used by the NHS they have to recognise their diagnoses.

    I can't seem to find a way of searching the lists, and in typical UKGOV fashion they are not alphabetical either!

  • Thanks so much, Martin.  I've found the Lorna Wing Centre on the NHS website.  I wonder if this means their private diagnoses are recognised?  (See link below)

    Overview - The Nas Lorna Wing Centre For Autism - NHS (www.nhs.uk)

    If I could just find the right person to contact, this would help.  I emailed a few people yesterday evening but I'm not sure who would know.  I'll keep looking.

  • The Lorna Wing Centre does accept NHS referrals.  I tried to get an NHS referral myself, but I would have needed to apply for an IFR (individual funding request) and my GP told me straight away that this wouldn't work because IFRs are for treatments that aren't normally available on the NHS, yet I had already been offered a referral on the NHS to the Maudsley Centre.

    But the LW Centre told me that I still needed to check that my service provider would accept a private diagnosis from there, even though the LW Centre take NHS referrals.  The problem is that I don't know who my potential future service provider will be, because I don't know anything about autism services.

    I'm going to take a time out - I'm getting quite stressed about all this.