AIBU to get myself a full ADHD assessment for my birthday?

[Goshitstricky]

I am 100% convinced I have ADHD, I always have been and being an adult and a chaotic one at that I've never been less certain.

Im not going to my GP, I live in an area where there is zero support for this, my children with additional needs haven't been able to access support so I certainly won't. The anxiety around asking is enough to put me off.

So speaking to DH I said that I don't think I can go on and keep the cycle of chaos going on in my head without knowing I will one day get support for it.

I'm studying an access course and I can't see me completing it or passing without some sort of help, I'm at the brink of leaving me job because I can't cope with it but also know I can't be unemployed because I'm impulsive and will no doubt create a new drama without something to fill that gap.

So looking online I have found various places that I can get a full assessment and either a yes/no diagnosis at the end, they're all booked up until my birthday next year so I said to DH I'd like to invest in that for my birthday as I genuinely believe it would help me. It would be a lot more than the family would spend on my birthday and we can't afford it without dressing it up as a gift.

So AIBU for doing that?

Well done for taking the first steps.

In the meantime can you take some steps to help with a routine? Maybe setting an alarm on your phone to eat meals (if you're hungry you will be difficult to live with) and going to bed at the same time each night

I cannot remember the name but there is a group on FB that tells you how to get a referral privately paid for by the NHS
Its worth looking up if your GP wont help

@Teflondreams

Yes it’s so worth it and medication can be life changing. You have to tell DVLA though.

You only need to notify them IF your condition affects your driving.

Well done OP. I was diagnosed with ASD in adulthood and it was a game changer.

I don't want to hijack the thread or come across as controversial but what do you gain from a diagnosis?

I have some traits but self assessed I don't think it's significant. If someone said oh yes you have ADHD or ASD or anything else then my behaviour would still be exactly the same?

Yes, do it. But do be aware that there is far more of a cost implication to it than just the initial assessment. Medication titration is expensive and if you want to access private coaching through whichever service you use, that also costs.

FYI, I went through the ADHD centre and got my assessment within a month.

£695 for assessment.

£215 for initial medication appt, cost of private prescription (varies by pharmacy), and then £215 + private script every 3-4 weeks throughout the titration process until you’re stabilised on a suitable medication.

After that your GP may take over the prescribing via a shared care agreement, but it’s not a given, and they will only prescribe the medication and dose agreed by the psychiatrist, and monitor you during this (BP, HR and weight). If you need adjustments and changes it’s back to the private psychiatrist again.

I don’t want to be a Debbie downer, just to manage your expectations about the cost implications of it all. My diagnosis has helped me understand myself a little better and my internal voice is a little bit kinder to me now.

@DoormatBob

I don't want to hijack the thread or come across as controversial but what do you gain from a diagnosis?

I have some traits but self assessed I don't think it's significant. If someone said oh yes you have ADHD or ASD or anything else then my behaviour would still be exactly the same?

'Not significant' probably points towards not being diagnosed. Certainly for autism the criteria you have to meet must show significant deficits.

It made a huge difference to my life because of that significance. It reshaped my past into something I now understand, it has made me aware of my vulnerability when meeting new people, something that I have no idea about and often got me into danger. It has taught me if things are hard it's ok to take time, it's ok to explain I'm having trouble processing and I need 5 minutes, it's ok to ask for a different seat in a restaurant because the one they offer me makes me feel uncomfortable. It means the law is on my side and any employer has to make 'reasonable adjustments' which could be minor to them but make an absolute difference to me. Most of all I am for the first time in over 40 years comfortable with who I am instead of feeling like a 'not quite right/weirdo/outsider'.

I did it.

My life is transformed. The medication has done what years of counselling could not, and it did it overnight.

It IS expensive - I'm 200 quid a fortnight for the medication while it's titrating, which is taking longer than I'd hoped because my BP was too high. GP has agreed to give me more BP meds because I'm able to ORGNAISE myself to exercise and so I am losing weight.

It's worth every penny. I reckon another month and I'll be on GP care.

I feel amazing. Even knowing that the vortex of chaos that I live in isn't my "fault" it's not a failing, it's just a lack of dompamine was a total game changer of how I felt about myself. Getting some medication to sort that on top feels like cherries. Good luck.

Shappi Korsandi talks about being diagnosed as an adult too, she was on the Fortunately... podcast but I'm sure she's talked elsewhere too.

(My DS, 9, has ADHD, we went private for a diagnosis but actually in some areas adult diagnosis is quicker, we paid for meds - not as much as you'd think, I think some of the short acting were around £30/month privately - but now we are on NHS care following reaching the top of the NHS waiting list. He has epilepsy which can clash with the meds too but his paeds consultant sees him for both which has been amazingly good for him).

Also OP, your low BP isn’t likely to be a significant issue to getting medicated, the ADHD meds are more likely to cause hypertension rather than hypotension. With regards heart condition, they may want cardiology approval before starting meds.

My psychiatrist has asked for the cardiologists go ahead (I have POTS) before starting meds, but cardiologist was happy to give his approval. Also have to get an ECG and some bloods done by my GP surgery and the results sent off to him, and also have to get drug tested too.

@Fluffypastelslippers thanks, that makes sense.

Does anyone have any advice when speaking to the GP tomorrow, I'm terrified that they'll just put it down to depression due to having 'a lot on my plate' as I have 4 children and one is disabled, alongside me having Elhers Danlos, they seem to just put everything on that.

My GP told me I couldn't possibly be autistic and wouldn't refer me. I had to go private.

(Elhers Danlos has a relatively high association with spectrum disorders, especially ASD).

I am prepared to be told it's deffo just stress and be given a script for antidepressants, it seems to be some of the GPs go to approach.

I have a couple private quotes if needs be.

I will also find the additional needs dept tomorrow at college and have a chat with them.

It really depends on which GP calls, some of them are lovely and some are quite dismissive.

After another disastrous day, I need to leave my job as my strategies to cope aren't allowed anymore so that's one thing I can tell the GP.

Just to update,

I was lucky enough that my econsult was sent to one of the practice partners who always gives 100% to his patients. He was lovely, so kind and understanding. He's made the referral for me, he has given me a self assessment questionnaire to fill out and generally seemed to want to help.
I also went to additional needs centre and got a pass to the LSA run open support sessions for if/when I need them and I'm not on the books for them to check in and see how I'm doing and if anymore support can be added in they will give it.

I can't believe how kind everyone was, I was expecting dismissal and eye rolls of I'm honest. Clearly I've spent too long with my sons high school senco where everything is like pulling teeth!

Thanks again for everyone's input, I have a long road to go but I feel like I've made a really great step today.

I'm so pleased for you well done for doing all that

I suppose you have to ask yourself what you'd get from a diagnosis if you don't want medication. If someone tomorrow told you you had ADHD tomo, nothing will actually change in your mind. It won't suddenly become ordered.

A lot of NHS services won't accept a private diagnosis. Private diagnosis are privately thought of by some medical professionals as 'bought' and not rigorous enough. One doctor said that it was really difficult to assess because people would massively read up and adjust their answers accordingly. They would also diagnose themselves and use semi medical language such as misophonia (it's not intentional) but people google and 'learn' what they have. It's just human nature, but makes it really difficult when people have pre-prepared answers.

You will get extra help studying but this will come down to what you diagnosis identified as issues. This could really benefit you.

You will have to tell the DVLA. They then have access to your medical notes and make an assessment on whether you can continue to drive. This is the same with or without medication. From the DVLA side, say your diagnosis says that you are impulsive and have difficulty concentrating this could have an effect on your capacity to drive safely. But medication can effect you in other ways so this will also be looked at.

But it's your money, your birthday and you should do what you like with it. But also be prepared to be disappointed. You may be told you don't have it, may be told you do have it but things don't change.

Brilliant update, OP - bloody well done 👏👏👏

@Thatsjustwhatithink

You don’t have to tell the DVLA about a diagnosis alone. Only if you’re medicated and that medication effects your driving.

Also, all this about the private diagnosis. Who do you think is doing these assessments? They’re NHS consultant psychiatrists working privately in their own time, not a set of rogue clown psychiatrists who didn’t go to medical school and don’t have to answer to the GMC.

If someone saw a private cardiologist, would your find their diagnosis of a problem any less credible or rigorous than if they’d seen the same guy in an NHS building? No, because his registration and reputation is at risk no matter where he consults with patients.

I suppose you have to ask yourself what you'd get from a diagnosis if you don't want medication. If someone tomorrow told you you had ADHD tomo, nothing will actually change in your mind. It won't suddenly become ordered.

Actually a lot will change in someone's mind after being diagnosed with a condition such as ADHD. My Autism diagnosis changed my entire outlook.

Private diagnosis are privately thought of by some medical professionals as 'bought' and not rigorous enough.

Bollocks.

One doctor said that it was really difficult to assess because people would massively read up and adjust their answers accordingly.

This applies for both NHS and private assessments and for a whole range of medical conditions. It's up to the professionals to know the difference.

You will have to tell the DVLA. They then have access to your medical notes and make an assessment on whether you can continue to drive. This is the same with or without medication.

More bollocks, which has been covered ages ago.

But it's your money, your birthday and you should do what you like with it. But also be prepared to be disappointed. You may be told you don't have it, may be told you do have it but things don't change.

Things DO change: that's the whole point

Great news op.

I was diagnosed as an adult after all of my children. I feel a fraud though as for me it was a huge bonus. It explains my slight madness. I don't think like other people. I struggle with boredom but love excitement have taken insane risk and just think that's normal. . I could never have done what I did in my life without it and see it as a blessing. As really I'm shy. That said I do take meds to keep me calm but they have nor changed me just take the edge of the constant need for dopamine. I am prone to over do things become overwhelmed and that can lead to trouble sleeping.
Many women are misdiagnosed thinking it's depression.
Of course you want to know and undergo assessment. Dr's understand its a difference in brain chemistry not just a reductive label for naughty boys . It's no longer just boys throwing chairs in classrooms. It's those good girls that stared out of the window or chewed their pens looking at clouds.

Make sure your factor in the cost of medication and titration which can be way more than the assessment. Prices differ significantly.

I also wouldn't go with psychiatry U.K. who have been victims of their or own success and there is now a huge long wait between diagnosis and starting titration.

OP, that's a brilliant update, well done!!!

Private diagnosis are privately thought of by some medical professionals as 'bought' and not rigorous enough

I'd clarify that by saying unfortunately, there are private diagnoses of varying standards and some medics are rightly pointing out all is not good on the private circuit.

The best way to get around that is to be diagnosed privately by someone/a team that also works part-time for the NHS. There's a lot of it about.

No-one in the NHS or other organisations can argue with a private diagnosis provided by someone who also works part-time for the NHS.

@pianolessons1

Go for it but be aware that as GPs we can usually only safely share care for prescribing with an NHS consultant. So if you are started on treatment privately you will usually have to have all private prescriptions until we can get you seen on the NHS.

That's not true at all. Many private ADHD patients have NHS GPs agree to shared care. Some GPs won't, and some are happy to.

Some private providers now have local NHS Contracts to provide assessments so going privately or via the NHS shouldn't be any different in terms of shared care as it's the same psychiatrists providing the same assessments in the same way.

@Goshitstricky

There is nothing at all locally, even for children with severe life effecting neuro diversity, we're in an area very well known for lack of services.

Medication would be tricky I think because I have a mild heart condition and really low BP so I'm not sure I'd even be suitable.

I have to make a list of things to ask.

They will discuss this with you. Plus you have to have an ECG before stating meds and take regular pulse and BP.

If your condition means that stimulants aren't suitable for you, there are non stimulants available.