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Private Diagnosis Route.

The Riddler

Now I realise this topic has been posted before, but quite frankly I’m too lazy to find it.

So I’ve been waiting for a diagnosis for nearly a year now and the NHS, which lets face it is a shambles, first referred me to the local service. They told me it would be nearly 3 years to get seen. Therefore I told my GP there were private organisations that took NHS referrals, so I was taken off the NHS waiting list and referred to Healios. Expect 3 months later, after many emails, I discovered that the GP had completely balls’d up the referral  and I hadn’t been referred at all!

Anyway, long story short getting fed up of the constant lies and catalogue of errors, so thinking I’ll just refer myself and pay privately.

What are people’s experience and recommendations for private practices. Ideally I want to do video, not face to face. More options I have the better.

  • in reply to Desmond79

    Individual Funding Request (a form used to divert NHS patient funding to an alternative provider)

    Clinical Commissioning Group (The local area group that decides how their NHS budget is allocated)

  • in reply to The Riddler

    Sorry to hear about your dad - but in a way, it really does simplify your path forward because you don't want people muddying the water.

  • in reply to Plastic

    Sorry to hear that. My Dad has dementia, so barely remembers who I am and my Mum had left before I was 5. We saw her a few hours a month, so don’t think she’s a reliable source of information. Besides she lives in Spain now. I hope to eliminate the need for others to be involved because I think it’ll just complicate things.

  • in reply to aidie

    I also have a twin so we were always treated and referred to as 'the twins' - a composite person - which meant I always had an NT version of myself to compare and measure against practically 24/7 until we were becoming more independent as teenagers.    Being 'too different' wasn't an option - I mask on a pro-level..

  • in reply to Plastic

    yea my mum is still like that an autistic in total denial, but in a good way, she raised me as "normal" pushed me into everything and fought hand in hand with anyone who dared to deny me access or say i wasnt capable. Best mum ever. Slight smile

  • in reply to Emmy

    I was lucky(?) - my parents were both dead so there was no-one to contact for corroborating evidence which meant it was just me to talk to.        I have a feeling that my mother was undiagnosed Aspie too but was in total denial - I think she would have complicated things by giving 'normalising' answers to everything.

  • in reply to Emmy

    the cost seems to be over 1000  - 1200 quid nowadays does that match your cost ?

  • I went private with The  Lorna Wing centre and mine took about 6 months. There was a lot of back and fourth with paper work and lots of chasing information etc. It deffo could've been done quicker but that was down to me not being able to find certain paperwork and the GP messing around with my medical records. 

    All in all the experience was brilliant. Any questions I had was answered over email, my assessment was done via webcam due to the pandemic, which they did charge less for which was beneficial. Sue, the lady who did my assessment, was so lovely and did a really good job making me feel at ease, listened to and non judgmental.

    I heard and read a lot of horror stories about going through the NHS, the unbelievable waiting times and peoples incompetence with the actual process etc, just like how you've explained your experience, which is why I decided to go private. If you can afford it, I highly recommend. 

  • in reply to Catlover

    I would do a face 2 face if I had to but, the idea  of it scares me to death. Maybe that’s a good thing though, if I presented at my anxious worst!

    What was the name of the place you went to and how long ago did you go?

  • I had two approx. 2-hour-long face-to-face consultations (with my father in attendance) spaced a few weeks apart. Then it took her roughly 3 weeks to come back with my diagnosis because she was very busy. In addition, I and a couple of my family members filled out a number of questionnaires.

    Not sure about doing it by video. I should imagine it is far better for the clinician to meet you in person, but that's just my non-expert feeling.

  • in reply to Plastic

    Thanks Plastic, great personality assessment. Sheldon is the best! You’re spot on with the NHS thing. I just wish they wouldn’t treat me like I’m stupid. Tell me my IFR is being reviewed at a CCG meeting, then tell me a month later they’re in the process of filling out my IFR paperwork! Seriously people, give me some credit.

  • in reply to Plastic

    good tshirt logo - "clearly has Asperger's"  and we should get one when we are diagnosed, paid for by NHS 

  • Mine was about 12 years ago and things may be different now but it was very easy - google who is the best person in your area and then get your gp to refer you.    Simple as that.      And get your wallet out.... Smiley

    My company health insurance paid for mine so there was an intermediate step of getting approval from them.

    I got to see the very top man in the field.      My assessment was done in one, long session in the form of a casual chat - the guy obviously knew all of the standard questions by heart (I think he wrote them) so was interlacing them into our 'chat' and watching my reactions and my answers.    Being Aspie, I didn't spot what he was doing.

    I'm very, very Aspie - sort of like Sheldon Cooper meets Commander Data so if you know what you're looking for, I stand out like a sore thumb.

    The report has the phrase "clearly has Asperger's" in quite a few places.

    All this time later, I totally understand myself now and I find it really easy to spot undiagnosed Aspies.

    As far as I can work out, the current NHS system seems to be all about not bothering the consultants so you get bounced around a whole load of very junior people, filling in questionnaires after questionnaire, before waiting months for someone to bother to progress you to the next pointless hurdle.    Covid has given them a brilliant excuse to sit back and do nothing and blame everything but themselves.