Is a private diagnosis for high functioning adult ADHD worth the cost? Long one

[ridl14]

Genuine question. My DB believes he has ADHD but the NHS backlog for diagnostic appointments may take up to eight years. The cheapest private appointments are c£800+ and often more than £1,000.

He's concerned about symptoms like losing focus, procrastinating over life admin, generalised and social anxiety, 'freezing' in his spare time. He's also been diagnosed as autistic (Asp).

He has a good professional job and works full time, lives alone. Left a long term relationship this year. Has just been able to start having some disposable income rather than living pay check to pay check. He would need to save up to afford the cost of the appointment.

He says he has always had these symptoms but thinks they got significantly worse after some family related trauma during the pandemic. He thinks the symptoms will resolve themselves primarily with medication though has recently been more open to lifestyle changes or habits I've suggested (I've tried to research useful tips and got him a couple of tools to help with organisation).

I work with children and inevitably see children with a range of SEND including ADHD and know it can present in many different ways, plus medicine is not one size fits all or necessarily for everyone. My concern is that he could be paying a lot of money for a diagnosis in the hope of resolving issues that might not be fixed with medication - I think given the family trauma there may be more pressing issues like PTSD, anxiety and that he could be helped by seeking treatment for these first on the NHS or as well as the ADHD diagnosis. And I'm unsure whether a private diagnosis is necessarily as rigorous as an NHS one but hopefully there'd be no difference.

I also feel like - though I believe what he's reporting - he seems to be becoming hypercritical of himself, frequenting ADHD forums and putting more and more quirks of his down to ADHD and saying these aspects of his personality or habits need to be solved with medication. Which can be completely understandable when they're affecting his quality of life, stress and ability to function but I worry that he's effectively put all his eggs in one expensive basket. Obviously it's a fine line between suddenly understanding yourself and wanting to help others do the same, and what might verge on almost obsessively criticising yourself and thinking all these discovered flaws will disappear with medication.

Long story short - is it worth the money or better treated with lifestyle changes and pursuing NHS treatment for anxiety, PTSD (maybe mentioning ADHD during this could also fast track an NHS diagnosis?)

I'll support him either way but don't want him to be taken advantage of. We're each other's only family support apart from my ILs.

It’s not safe to do shared care outside of the NHS due to potential lack of follow up. GP’s cannot hold responsibility for the prescribing of these drugs on their own hence the term ‘shared care’.

You can’t be in shared care with a provider who isn’t regularly seeing the patient or relies on them to pay to be followed up.

Shared care with non NHS provider stops safely existing once the diagnosis has been given as entirely dependent on the patient paying for their next follow up. The GP is meant to have a specialist partner to refer back to. How can they do that if the patient doesn’t pay? The medication then gets stopped but it’s just not the point of shared care.

People expect shared care but don’t realise what it actually means.

I think/know I have ADHD. You don't have to go through an assessment. I want to go for a diagnosis but am reluctant to ask I am nearly 40 and for me it won't really achieve anything. Od I was still on education I would pursue it more. I read that you can self identify which means he can say he has ADHD while he either waits for the assessment or doesn't have it at all.

There has been an explosion here of private providers who are willing to take money for assessments, but then won’t do the check up appointments over the year and expect GPs to prescribe. The GPs are rightly refusing to do ‘shared care’ as it’s not being shared!

Don't go near Harrow Health, they do not respond by email to any queries and don't answer their phone. Which means I can't fill in their forms, and because I can't do that, they will never offer me an assessment appointment.

I'm currently trying to change my Right to Choose company to someone else.

I strongly suspect I have ADHD, but will probably never seek a diagnosis because that's well down the list of things that are too difficult for me to get on with.

I've just bought a book because it was 99p on Kindle yesterday and have actually started reading it. It's by a well regarded adult ADHD Psychiatrist who himself has ADHD and it's looking promising so far.

https://www.amazon.co.uk/gp/product/B0CGZGM77Z/ref=ppx_yo_dt_b_d_asin_title_351_o00?ie=UTF8&psc=1

I think some of the things discussed is whether or not to seek a diagnosis and whether or not to take medication. Plus 'seven pillars' designed to build good habits over time to lessen the effects of the symptoms and effects on life/work.

Worth a read for him?

Can you tell me how your diagnosis has affected other areas of your life wrt insurance, driving, etc?

I have undiagnosed ADHD and find at this stage in my life - just turned 50, youngish kids (also ADHD), party employed but also have own business - the wheels are finally starting to fall off so really am wondering if I'd benefit from a diagnosis but am concerned about the practicalities...

It might be worth looking at your situation holistically. Have a health check and bloods at your GP, see if any underlying health or hormones going on. Look at the support network you have, is it working for you or are you struggling as you don’t have support? You might benefit from some talking therapy or professional coaching? There are lots of options if you are unsure which way to go and might help you make up your mind

@CherryPopShowerGel I'd be really interested to know what scientific evidence this is based on please?

I payed for a private diagnosis 2 years ago - biggest waste of money ever!!! The company I used was part of the right to choose (unsure if they still are) but they were an absolute joke from start to finish.
I was diagnosed by a pharmacist!!! I tried medication for a few months but I didn't feel safe under their care. The final straw was the shared care letter they tried to send to my doctor. It was a cut and paste standard letter full of lies that I hadn't said. I didn't let them send it but I highly doubt I would have been accepted for shared care.
I'm still struggling with my mental health which I do think is adhd related (it's the best fit for symptoms I've had from early teenage years). I've decided medication isn't the answer for me. What I really need is somebody to give me a kick up the backside everyday to do all the things I need to do but put off and put off until I have to do them!!! I don't think such a thing exists and would be way out of my price range if it did exist!!! I'm thinking of a life coach for a short time but I'm scared of throwing good money after bad again.
I hope your brother finds what works for him

I think there is great worth in knowing how and why your brain is working in the way that it is. As to the amount of money that informed is worth, it would be down to the individual.

If he only wants to know to be able to drug his way to "normal", I would question what he would feel like if the medication doesn't suit him, or the side effects are too much.

ADHD medication is a quick and dirty fix for a variety of underlying issues that affect executive functioning. I’m willing to bet the trauma your brother experienced sent his nervous system into overdrive and now his sleep quality is poor and his brain has gone into survival mode.
Unfortunately it’s easier to give someone stimulants to get them functioning again than get them some decent therapy or investigate for other issues like sleep apnea or inflammation. It that respect a private diagnosis is worth it in that adhd meds will give your brother the help he needs to get back in the saddle.
Be warned that if your brother mentions the traumatic event a good specialist will suggest counselling for PTSD and not medication.

ADHD meds aren’t some panacea that fixes everything. Far from it! I find they make a very limited difference. In fact I’m not sure if I even get any benefit these days (which I’ll be talking to my psychiatrist about at my next review). Sounds like your brother would do better to invest in some good therapy as ADHD meds aren’t going to make any difference to most of what you describe.

Yes, I would also like to see the evidence of misdiagnosis when going through reputable private clinics.

The reality is that no one goes for a private diagnosis unless they are fairly certain already that they have adhd. Similarly, most dont go that route unless they really really feel they need help.

It's also worth pointing.out that ONE way in which a diagnosis can be confirmed is if the medication has the right effect. A non adhd brain given stimulants of this sort is likely to respond v differently. One of the many reasons these are controlled drugs.

The issue I see for your brother is whether or not he is adhd, even if meds do help, they are almost never a silver bullet. Yes, it absolutely helps but it won't magically erase the impact of trauma - it might make working through the trauma easier. It won't magically make him.super efficient and proactive, but it might make it easier to apply the tools everyone else does to make themselves more effective.

So if he goes this route it will be v important to find a reputable doctor and to.engage with the process. Ours insisted, for example, on a whole session yo talk through adhd and what it is (vs random shit you read on the internet) and what we can expect for ds. We also do 6 monthly reviews as standard and, for example, are a ozit to have an earlier review as medication appears to need changing again.

@Sunat45degrees its not misdiagnosis as such, it’s usually the same assessment tool.

You can research how to game the process if you really wanted to.

It’s over diagnosis that people are concerned about as one thing as the symptoms can be very similar to other MH conditions and these are NOT being assessed. Patients are not being offered support for trauma, anxiety, depression and PTSD via this route - all of which may play a major factor in someone’s mental health and wellbeing

The trauma is often related to the undiagnosed ND though. The mental health conditions such as anxiety and depression are symptoms of unrecognised and undiagnosed ND.

I agree with pp that those seeking private diagnosis are often older and desperate for answers to their struggles after being misdiagnosed or brushed off for years. Of course they are more likely to be diagnosed because your average person with no struggles in these areas is not going to be seeking diagnosis.

Attitudes like those on this thread and others like it is why the ND board is hidden and why many people don't seek diagnosis because after decades of judgement they get judged for having an official diagnosis.

Okay, fair enough. However, while the potential for gaming the system is one I accept, realistically, they could do the same once they hit the NHS. IN fact, now that you mention it, a version of this is happening with a woman I know who is trying to get her son diagnosed more quickly via the NHS.

The lack of attention paid to the wider issues is one that I'd say is as much a problem in the NHS as in private care and at least in private care you are usually given a bit more time to discuss these issues with the doctor. It's a general failing with the medical professions that a holistic view is not necessarily taken anfd i nmy experience, this is x1000 with the NHS. The closest the NHS comes to this is to insist on doing x first before y. But I don't think that's any more helpful than getting an ADHD diagnosis without assessing the other issues alongside. So the NHS will want to rule out 500 things before it even starts to address the ADHD and that si not particularly helpful either, especially as ADHD is likely to cause other issues such as trama and depression to be worse or to present differently.

The trauma is often related to the undiagnosed ND though. The mental health conditions such as anxiety and depression are symptoms of unrecognised and undiagnosed ND.

100% this. My brother has been medicated for depression for years. I'm almost positive that if they switched to ADHD medication, he'd either rbe able to stop depression meds or reduce them significantly.

Thank you! I'll take a read.

This just isn’t true.

Your GP friend sounds rather cynical. I heard on radio 4 a week or two ago that 50% of GPs will accept shared care for ADHD.

I'd watch the panorama expose on adhd privste online diagnosis before considering that option.

I had it done privately. In all honesty - no. Not worth it. It cost £750, frankly I wasn't convinced by the testing process (there was nobody they could really talk to about my childhood so they just....didn't) and although the end result was that I do have ADHD, I'm still not 100% sure that I actually do. And you can't use the private referral to get referred onto the NHS any more, so unless you want to pay £300 a month to get the drugs privately or whatever they charge for counselling, it all feels a bit like it's just a pointless way of extracting money from people.

investigating other avenues or causes of symptoms to rule out conditions is the cornerstone of medicine especially in general practice or psychiatry. If is differential diagnosis and that’s meant to be a bit more complex as it means that person really does get what they need by eliminating other possible causes.

GP’s are out there on their own now with this as MH services have crumbled.

What we have now is a large volume of adults and children completely bypassing these broader assessments by self diagnosing ADHD (without any professional assessments at all) or seeking a diagnosis and medication without ever taking any other avenues of support. Here, local NHS paediatric services offer OT support (groups/workshops) to parents and children to try to help with some of the most common challenges they are facing - the RTC route never offers this. I do think every person who is referred to mental health services should have a mental health assessment to identify if there are other possible factors. Medication can’t treat trauma alone.

Anyone can game any system for a paper based self reporting assessment like ADHD or even anxiety, or pain. It’s not limited to private providers but surely you can see that people are less likely to game something that is harder or longer to access, the ease of access of RTC provides more people who would usually attempt it via the NHS.

There isn’t enough funding for the people who do need it but diagnostics is not the only answer is what I am trying to say. Therapy should be a major part of people’s journeys and it isn’t

I've been fine with them. All forms completed and awaiting appointment.