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.

Based on your assessment, it's not worth the money. Reputable diagnostic providers won't diagnose him as he appears to be functioning well. Reputable providers won't be charging £800. They are much more expensive than that. If he is diagnosed in one of those unscrupulous clinics, there may not be a shared care agreement in place meaning he will have to self-finance prescriptions costing him hundreds every month.
I would encourage him to wait for the NHS assessment and access IAPT in your local area to work on trauma.

The first thing to check is whether he has private medical insurance. Some companies include this as part of their offering so that could be an option for diagnosis.

The second thing is does it impact his day to day life? If so, then it could be worth a diagnosis because he can share that with his employer and benefit from the necessary adaptions. Without it, his character could be called into question and he could be subjected to a disciplinary unfairly.
Also, it it’s going to help him access support or things that are otherwise inaccessible - and these things would benefit his life - then it’s worth considering.
And finally, sometimes people find comfort in having a title / name / word to ‘justify’ their ways / behaviours / traits [please excuse clumsy wording] which can give them confidence. Aka - they’re not ‘stupid’, they’re just functioning in a world that was designed for people who are different to them. And again, adaptions can support them in the workplace for example.
Put more directly, is your brother achieving his full potential at the moment, irrespective of how successful he appears from the outside, or is this holding him back?

Yes it is. It has changed my life. And yes reputable providers do charge £800-£1000k. The PP is incorrect on this. My private clinician is an ex NHS lead in adult ADHD. Completely above board. This is what it costs. Don't wait for NHS assessments that never materialise.

The important thing is for him to choose a provider who is approved by the NHS and authorised to do shared care with them, so that once he stabilises on the right drugs, he can get his GP to prescribe them and pay NHS prescription rates instead of £150 a time. He'd still need a couple of check ins with the private clinic.

I work from home, for myself. the way I saw it - paying that initial £800, and then about £400 for medication while we worked out the best dose, was easily earned back when I was able to focus better and take on more work. Even if I hadn't been able to do this, generally, the quality of my life - my organisation, energy levels, focus, mood etc have all hugely improved. He deserves to live a fulfilling life and that is bloody hard with ADHD. His quality of life is worth one grand. I deeply wish I had done this years ago.

Any private company offering assessment and diagnosis for things like ADHD will diagnose anyone who pays, as it's subjective and people are paying for a diagnosis. NHS assessment isn't weighted towards diagnosing everyone as there is no reason to do this. He'd be basically purchasing a diagnosis.

If that's important to him then fine, it's his money. But it sounds like he has already decided he has ADHD regardless.

Ask his GP to refer him to Psychiatry UK. It’s NHS funded and takes around 6-8 month

For ADHD I would be cautious about private assessments - some over diagnose and you may have to pay for medication privately until you can get back on NHS sysyem
again.

Go via right to choose. The quickest available right now is 'harrow health' I've been seen within 3 months.

It is via your GP https://adhdrighttochoose.com/

Also private clinics do not over diagnose, and you're not just paying for diagnosis either. Ridiculous statements. Outright stating that medical drs are lying.

I think your DB should do some research around autistic people using ADHD medication. I don't know if there is any research out there, my experience is anecdotal. I work with Autistic people and a few of them tried ADHD medication after being diagnosed with ADHD, it did not work for them and made them feel worse. I don't know any who have both conditions who have been successfully treated with medication.

This just isn't true. If you do your research into private providers (recommended) though, you should look for those who are CQC registered, follow NICE guidelines and are NHS registered providers. Most are now available through Right to Choose, so to say they don't adhere to the same standards as NHS assessments is incorrect. We should be encouraging those who can afford it to seek private assessment to reduce pressure on the NHS. This kind of false information is harmful. Your brother should do his research, op - including asking his GP if they'll accept a shared care agreement.

Interesting. Do you know this for a fact or is it opinion? Would be interested to know the basis for this opinion.

Following with interest

@CherryPopShowerGel I'm also interested to hear where you've got this from.

I work for such a company, I can assure you thats not the case.

Thanks all, this is really helpful - have looked at this website and passed it on. I have heard there was an investigation into some private clinics and the reliability of their diagnoses, I haven't found anything concrete about them over-diagnosing but just want him to get the best outcome regardless.

I will recommend he speak to the GP about trauma, anxiety at the same time. He has essentially decided he has ADHD and that a diagnosis is inevitable, which I can't comment on, I think it will just take someone medically qualified to assess, which neither of us are. He is putting anything else like his anxiety down to ADHD so I suppose a rigorous assessment would just give him some answers either way.

Thank you I'll definitely suggest this as well

I’m with @JLou08 - I have also seen examples of AuDHD not doing well with ADHD medication; someone described it as, once the ADHD is medicated, it’s like the dial is turned up on the ASD side. Can result in increased anxiety as well.

Probably not worth the money unless he can afford to pay for his own care and medication in perpetuity as most NHS GP's are no longer doing shared care. At best they will put him on a multi-year waiting list for an NHS assessment.

I just took my adult DC to a private psychiatrist in December for an ADHD assessment. It cost £900 for that. The. We then to get a private prescription for Ritalin, then a medication review for £180 and another private prescription for £65.

The thing is ADHD is highly treatable with medication.

My DC is at uni and finding the ADHD extremely disabling (eg doesn't understand anything that happens in tutorials due to significant language processing issues) so I'm hoping once the dose of the medication is right, DC will cope much better.

I'm thinking of getting assessed too.

And I forgot to say, once the psychiatrist has stabilised the dose of medication, then the NHS GP will do shared care, so the prescriptions will be on the NHS.

This is not true.

I have a lot of thoughts on this but generally speaking, here is my main concern

A lot of people jump to a diagnosis and medication and never engage with any therapy. Moreso men than women but there is no pathway for therapy or CBT before going straight to assessment. Many of the private assessments are not looking at whether you have depression, PTSD or anxiety and not providing that support at all.

therapy takes longer and is very hard but it could provide a really good basis of support and tools to help your life. You can’t really know what symptom is related to what without a full assessment of your overall mental health and functioning. The ADHD assessment is one small part of a much bigger picture of complex diagnosis which could overlap with many other kinds of mental health conditions. You could go down this pathway then if it doesn’t help, consider ADHD but you will have worked on some of the issues presenting to you.

It does appear the role of private providers are being questioned by NHS professionals, just this week I sat on a board of discussion about this as many HCP are raising concern about the high prevalence diagnosis by private providers and how robust it is and a lack of a full mental health screening. I can link you articles about this for anyone doubting what I say. It’s not the quality of the assessments themselves it’s that they are in isolation and do not account for other likely diagnosis or offer any treatment, ie anxiety, depression.

Would his work pay for it? I work for the CS and have arranged for diagnostic testing through occupational health

My friend is a gp, he's had over 100 adults seek adhd diagnosis and go private last year, all but one got a diagnosis, the one that didn't got a psychosis diagnosis, not a single one was accepted for shared care because they do not meet the criteria for diagnosis under current guidelines so you would be paying privately for meds basically. Private providers give you the diagnosis you are paying for basically, he's not a fan!

There is some overlap between ADHD and Autism and anecdotally I know someone who I would bet my bottom dollar has undiagnosed ASD but they have sought out an ADHD diagnosis instead because of the perceived stigma associated with ASD. They sound like your brother, in that they have become quite obsessed with having ADHD and researched the condition thoroughly. The problem is that the ADHD assessment process isn't really robust enough to filter out people who know the 'right' answers and have convinced themselves that their quite normal behaviour is indicative of ADHD.

The assessment process relies on you having a reasonable grasp of what normal is and honestly and as objectively as possible highlighting areas of struggle. I think this is really difficult for people with autism to do. Someone that has convinced themselves that they have ADHD and researched the condition thoroughly will almost certainly get a diagnosis. I think people with ASD are more likely than most to fall into this category.

I do wonder how many people happy with private assessments have left without a diagnosis.

In my London borough, GPs are not doing shared care other than from NHS Trusts any more. People are paying for private ADHD assessments, going to the GP for meds, and then have to return to the bottom of the NHS waiting lists for initial ADHD assessments. Simply put, the NHS cannot cope with the number of referrals right now, in primary or secondary care.

DS2 is autistic and received an ADHD diagnosis from psychiatry uk whilst on NHS waiting list. After titration of meds, prescription was taken over by GP under shared care. Worth mentioning that following observation at school at age 7 by NHS specialist nurse he was informally diagnosed and trial of meds recommended. But lack of formal diagnosis put him to the back of the queue and was referred to CAMHs.

Obviously he is still autistic and still has social/communication issues but the meds are a huge help with academic learning and ability to focus. He is currently off meds (national shortage plus investigation of heart rate) and he currently spends hours each day on personal obsessions and can't refocus on academic work - first year of degree in MEng has been a challenge!