How to choose somewhere for private diagnosis

Holly987

Hello,

I am 45 female and suspect I may have autism and possibly adhd.  I spoke to my GP who is doing me a referral letter, but looking into waiting lists for the NHS it looks like it will be at least 2 - 3 years.  I have funds for a private assessment but I have no idea what to look for. The GP said to look for someone that has worked for NHS too, but other than that cannot recommend or suggest anywhere.

I've heard of people having terrible experiences where they have been dismissed and not been diagnosed, only to be diagnosed later with a more lengthy thorough assessment. I have sent queires to a few places asking if they use the masking questionaire and how much experience they have with female autism.  Does anyone know any other questions I need to ask, or what to look for? Or able to recommend anywhere in the SouthEast.

Although I have the funds I've not been working for two years and don't want to waste money on somewhere that isn't up to date with female research. 

Thank you
Holly

Biblioklept

Have you heard of "right to choose" @Holly987? I'd recommend using that for ADHD assessment rather than paying privately. It's done via a private provider but on the NHS. 
https://psychiatry-uk.com/right-to-choose/ (there are lots of providers that do it, not just Psychiatry UK, just their link shows lots of usual information. ADHD 360 is another good one and ADHD UK). 

Which have you been looking at? Check if they do right to choose too.

I think you can get autism ones too but I haven't looked into that. 
 
I was diagnosed as an adult with autism and ADHD. I did right to choose for ADHD as my county will only do it via a panel. 

I considered private but something to be aware of; a lot of people find that once they've self-funded assessment and diagnosis the NHS wouldn't accept to cover prescriptions so they had to continue paying privately for ADHD prescription medication and ongoing appointments for titration and reviews. This really put me off because although I could self-fund the assessments I couldn't guarantee I'd always be able to fund the medication and reviews.

One thing I think is important to think about is why you want a diagnosis and what way it will impact your life. 
I agree about it being harder for females and needing to find someone experienced with female autism and ADHD as the diagnostic criteria is still way behind research.  

Holly987

Thank you. I had looked into Right to Choose, but the waiting lists seems long for Psychiatry UK, so then forgot about it. I also read someone went private, but because they had a referral letter, they were able to do a shared agreement thing where nhs paid for medication? I also mentioned autism to GP this morning and she was very dismissive. I'm not keen to go on medication and less concerned about ADHD than autism now.

I want a diagnosis as I think it would help with work, (I've quit so many jobs due to social difficulties) I would also like therapy that is targeted for autism/adhd - developing life skills.  I also think it would explain a lot about my life.  I have fallen out with all my family and I think 'autism' may have played a part in that and I want to get back in touch with them and I think a diagnosis might help us figure out a way to 'communicate'. 

Did you feel that a diagnosis helped you?  How have you found medication?  Did you have both adhd and autism diagnosis through Physchiatry UK - did that come under two separate assessments or could they diagnose both with 

Tori_Scope

Hi @holly987 Welcome to the community!

I'm not able to recommend anyone, but I'm wondering whether you mind find it helpful to check out the National Autistic Society. They have plenty of information on their website, including sections on diagnosis.

You may also find ADHD UK's pages on diagnosis helpful. I think they seem to have some information about how NHS and private services can link up. 

You may be able to get some support before you get a diagnosis. Have you spoken to your GP about perhaps being referred for talking therapy, if that's something you think you'd find helpful? 

Holly987

Thanks, I've actually been having counselling for last two years, which has sort of been helpful, but also not that helpful. Had various types of therapy over the years to get to the bottom of things, why I can't hold down jobs etc and I think autism would explain everything. 

Biblioklept

Holly987 said:

Thank you. I had looked into Right to Choose, but the waiting lists seems long for Psychiatry UK, so then forgot about it. I also read someone went private, but because they had a referral letter, they were able to do a shared agreement thing where nhs paid for medication? I also mentioned autism to GP this morning and she was very dismissive. I'm not keen to go on medication and less concerned about ADHD than autism now.

The problem is (at least as far as I've read) the NHS don't have to agree to shared care which is annoying. 
During lockdown referrals to Psychiatry UK and others went up massively and the lists grew to almost 2 years long, which is still shorter than NHS in my area, but it's back down to 6 months now.

I think a lot of GPs are seeing an increase in referral requests so maybe aren't taking it as serious and I think there's a real lack of understanding about how it impacts adults and why a diagnosis could help. Rather than it just being about children and support in school.

Holly987 said:

Did you feel that a diagnosis helped you?  How have you found medication?  Did you have both adhd and autism diagnosis through Physchiatry UK - did that come under two separate assessments or could they diagnose both with 

Very much so. More the ADHD than the autism because when I started looking at ADHD specific strategies to help manage my life, I actually found some things that were helpful and have made differences to me. It also helped me break out of the cycle of blaming myself and feeling guilty every day and stop telling myself I was lazy or just needed to try harder or be better. I'd give things my all and they'd never work out and I couldn't figure out why and treated myself badly as a result. But once I understood it was likely ADHD/autism it allowed me to be so much kinder to myself and my self esteem improved as a result. 
Autism diagnosis helped me in so far as I realised why people didn't always understand me and that I may not have understood them. I knew I had autism so the diagnosis wasn't as important to me because even if they said I didn't, I was so confident I did that I wouldn't have believed them. Luckily they saw it too, despite the skewed assessment criteria.

I had two separate assessments, ADHD first and autism via the NHS separately but it was a huge fight and a very long wait to get that, as it doesn't feel they like to refer for adults, whereas ADHD was straight forward because I used Right to choose. 

As for medication, it really helped. I mean I'm still me and struggle but it took away the procrastination and the multiple streams of thought were more manageable so I am able to start and finish more tasks. My problem is I don't remember to take it all the time, or I have a few good days with it and convince myself I'm "cured" and stop taking it to see if I can manage the same without (I can't) But when I do take it I have noticed big improvements in how I get through the day. It honestly feels like I was the person I was always supposed to be. The person I'd be if all the 'noise' wasn't there. 

I hope you manage to get back in touch with family and work through issues  

Holly987

Thanks, thats really helpful, especially about the medication. It's great that it makes such a difference.  it would be wierd not to procrastinate

Biblioklept

It is so weird to see something that needs doing and just doing it. Obviously it's not a perfect cure and some things are still always going to be harder but it didn't feel like I was fighting myself too. 

Good luck with what you decide and keep in touch and let us know how you get on or if you have any other questions. It's my special interest now too so could talk about autism and ADHD all day  

Holly987

Good luck with what you decide and keep in touch and let us know how you get on or if you have any other questions. It's my special interest now too so could talk about autism and ADHD all day  

Thank you so much it's been really helpful. I'm not sure it's possible to message but if it is, then I do have loads of questions and would be keen to hear all your experiences and what you know about it. But doesn't seem to be a way of messaging?

I think I'm going to bite the bullet and book an initial assessment with a provider, that offers an initial hours interiew, screening questionaires that costs £275 and they then say if they think it's worth going for the actual assessment.  I'm just fearful that they'll just tell me I'm completely mad and totally dismiss it, especially after watching a you tube video where author had a really bad experience - https://www.youtube.com/watch?v=aHHv4jI7w3Q she then found somewhere where they took a lot longer but actually asked why she had put certain answers to certain things in the questionaires, the questionaires seem really open to interpretation sometimes, somethings are easy definite yes's or no's but other things can really depend on how you look at it.  Sometimes, I'm not sure how they can diagnose in 3 hours.