View Full Version : Diagnosed but no treatment....looking for advice


PeterD
10-13-09, 10:25 AM
Hi everybody,

I was referred to a neuropsychologist back in June and finally had my assessment last week. I was fortunate to meet an extremely conscientious psychologist who spent the entire day assessing me with a long interview, discussion with me and my partner and lots of different tests. I had somewhat dreaded the appointment after having read horror stories of doctors who don't take adult ADD patients seriously. As he talked through his assessment with me and told me that he believes that I have inattentive ADD, I was relieved and also excited about the prospect of being able to get help for something that has been a major impediment in my life.

Sadly, my happiness ended abruptly when we started talking about what can be done to help me. I had assumed that treatment wouldn't be an issue once a diagnosis was made, especially given that the assessment was at a major hospital. Wrong! The psychologist told me that I now have to go back to my GP to get a referral to a psychiatrist and that because there are no ADD--specialising psychiatrists in my area, it is likely that whoever I go to will not be willing to prescribe medications/CBT. In other words, I will have to try to convince that psychiatrist to refer me to a psychiatrist in London who specialises in ADD. It sounds ridiculous to me and no doubt will take a lot of time and effort, during which I will continue to struggle with my symptoms. I'm hoping that whoever I end up with locally will take the neuropsychologist's diagnosis and assessment seriously, but there are apparently no guarantees. Very anticlimactic!

Does anybody have any suggestions that may speed things up? I'm new to the NHS and uncertain what my options are, if there are any at all. Any advice would be greatly appreciated!

Thanks!

P.


Here is thread I started in June: http://www.addforums.com/forums/showthread.php?t=69716

Song of Mercy
10-13-09, 06:06 PM
You are not alone in your struggles negotiating the red tape and procedure in your home country. While you wait learn and share here at the boards. Medication is truly only a small part of treatment. The fact is that when you take meds, you still have to make and follow through on choices. You can practice tips and tricks for managing your symptoms here while you wait for your medical therapy to begin.


Best Wishes

Song

PeterD
10-15-09, 02:10 PM
Yes, of course there are many other aspects to treatment than medication. I guess what I want to know is what is biological and what is just learned behaviour and lack of routine because of focus problems. Once I try medication, hopefully that will become clear to me and I'll know what I need to work on. In the meantime, yes, I'll definitely be reading here and trying to practice changes in my daily (lack of) routines and structures.

What if I go privately to a psychiatrist? If prescribed a medication would I be able to get that through the NHS, or would I have to pay by myself? I'm not sure how the private and NHS sectors work together, or don't work together - does anybody know?

Thanks for good advice....

cheers,
P

Sissaphus
11-23-09, 04:08 PM
I just wanted to revive this thread in-case anyone can add to it.

I am in a similar boat. I have been diagnosed in the US, but will soon be moving to Central London. I'll qualify for NHS and may have BUPA? I'm pretty clueless about how it all works and am pretty worried about. What someone here has told me so far - I'm not including there name in reference because I don't want to misrepresent what they've said and my lack of understanding is still so great that I surely will. There is Maudsley Hospital in London that you can get referred to, but you need to be in the "right" area. Your GP reference you to a Psychiatrist for evaluation and the area you live in plays an important role in all of this.

For myself, I need to find a GP who recognized ADHD and can refer me to a Psychologist. I cannot pay out of pocket for the Dr. or the medication - I'm currently taking generic Adderall IR (which I don't even understand if you can get in the UK?), but I would like CBT in addition to medication for other issues.

Would it help if I got re-evaluated in the US by a Psychologist at a major hospital or would I need to be evaluated there no matter what?

I don't mean to hijack your thread. I hope replies will be useful to both of us and potentially many more in similar situations.

Thanks,
sissaphus

bahhhh
11-24-09, 11:16 AM
I'd find a private GP willing to prescribe adhd meds. I'm not sure why you think they won't prescribe CBT, that's pretty harmless compared to amphetamines.

Doing it all private can be affordable, maybe even under 1K/year, as some meds like Dex are very cheap. It's worth a try and I wouldn't waste a minute, as it'll fix most work issues.

Btw don't count on BUPA, they don't pay for adult adhd treatment, they're still in 18th century.

This means, you have to figure out everything by yourself, become an expert at everything related to your condition and 'teach' your GP over the months, years....

Chances are, some meds will get you an immediate boost in your career, but its a long trial-and-error process to find the right combo and dosage. Some meds will have miracle effects in the first few days/weeks, but then tolerance/side-effects kick in and you're back to square one, so you'll probably find out that very small doses work best on the long run.

Meds are only a small part of the process. As you'll find in some threads on this forum, it's essential to get rid of bad habits and stop all junk food, alcohol and other self-medication stimulants. I found out what works best for me is gluten free, dairy free, no sugar, lots of water and fresh food, no alcohol except some good red wine on occasions, and lots of sleep. Daily exercise (running, swimming, ...) is also essential. Get some gadgets to make it fun, that helps (hr monitor, gps watch, whatever...), it makes it easier to persist when you can monitor your progress and feel satisfaction of improved performance...

There are also lots of supplements that help a lot, for me it's gingko biloba and DHA for memory, magnesium for energy, etc.

I wish I knew all this when I did my phd, but hey, it's never too late. What took me a while to figure out is how to keep motivated. add/I is mainly a problem with energy and motivation. energy is easy to fix (mg + dex) but motivation is tricky. ritalin helps a bit, but if you're in a job where you get enough external stimulation, you don't need it. The problem is if you're self employed or doing stuff like a phd where you need internal motivation to get on with your work, mainly to START the tasks! Once started, it's easy to use hyperfocus to keep going, but without that initial motivational kick, you get nowhere.

If I were to start a phd again, I'd schedule regular progress review meetings with my professor, and get a COACH to keep me on track, meet with him/her for a couple minutes every morning to summarise what I've done the day before and what I'm gonna do that day, and perhaps discuss some particular issues if needed... coach doesnt need to be academic, can be anyone who you feel can give you that motivational trigger.

check out this video: http://www.youtube.com/watch?v=q3d1SwUXMc0

...and this thread: http://www.addforums.com/forums/showthread.php?t=25541

There are lots of other things that really help, like, organise your task with GTD (use OmniFocus if you have a Mac), and use the pomodoro technique to help with focus and distraction, it really works for me when I need to get on with the most boring tasks I've been postponing for weeks/months/years...
http://www.pomodorotechnique.com/

also, check out the Randy Paush lecture on Time Management:
http://www.youtube.com/watch?v=oTugjssqOT0

hope this helps, good luck!

Sissaphus
11-24-09, 01:18 PM
Hi Bahhh,

Thanks for the info on BUPA. Could you recommend a GP? - if your not suppose to do that on a thread then maybe you can pm me?

We really can't afford to budget private care, but if it comes to that we will. I think I'll need weekly CBT initially, unless I can find someone good while I'm still in the US and it helps enough that I won't need it in the UK. The most important and most difficult thing has been to find someone who accepts my insurance and understands ADD and can appropriately treat comorbids accordingly. From what I understand - the approach to treatment would be different depending on if they are a result of ADHD or separate conditions. I don't need a therapist like the one I recently had who didn't take ADD into account. Her treatment was effective and appropriate for major depression but became ineffectual once I was back to my usual mildly depressed self. I have insurance but, I paid her out of pocket because I thought she could help. She simply didn't take ADD into account because she didn't know how. I don't want to pay her to 'learn' on me.

Coincidently, I just watched 'Management of ADHD' yesterday and thought it was great. I'll watch your other recommendations soon as I imagine they will also be helpful. I'm already taking some supplements including fish oil and am waiting on ordered magnesium. I need to make an effort to exercise and I don't, but you're right about that too.

Thanks again - it's really appreciated!

bahhhh
11-25-09, 11:19 AM
Sissaphus, if you're still interested, I'll PM you some more info about private GPs.

The cost of a private GP is really small compared to the whole cost of living in London, especially central London. To put things into perspective, monthly private gp appointments will cost about ₤600/year, which is less than 1 month rent for a tiny studio flat, or about the cost of a coffee/day in a coffee shop. CBT cost about ₤85/session, and much less for group sessions. The cost of a travelcard for the London underground is well over ₤1000/year and up to almost ₤2000/year if you live in the outer zones. So a good trick: get a bicycle and cycle everywhere, this way you will save a lot of money and get your daily exercise ;)

If you have other co-morbid conditions that are covered by an insurance, you could try to get a referral for that (without mentioning ADD, as it this condition doesn't officially exist in adults), but I'm not sure how you would be able to move to the UK and get an insurance to pay for treatment for a pre-existing condition. What insurance are you on?

Another way could be to find a job in a company that provides BUPA cover, which will usually pay at least ₤1000 towards your treatments (except ADD of course, but CBT for depression might be an option)

Seriously, if you can get re-evaluated in the US, do it! Don't count on the UK health system to help you out, it probably won't, unless you're very lucky, or have the patience to wait for several years for an appointment.

My reasoning about the cost of ADD treatment is that it's worth every cent. Without meds/treatment, we're useless at work, constantly forgetting/losing things, having to pay cancellation/overdraft fees, buying the same items twice because we forgot we already bought one, etc. With appropriate treatment we can outperform most non-ADD people because of our tendency to work in areas we're passionate about and our ability to hyperfocus. This means you can get a better job, be successful at it, get promoted and get pay rises... this will pay you back 1000 times what you've invested into treatment.

Re: Adderal:
You probably won't be able to get it prescribed in the UK, and if you do, it will cost you about 20-30 times more than Dexedrine. Also, I didn't think Adderal worked for ADD/I, but then again, everyone's different. Does it work for you? How much do you take? Have you tried Dex?

Sissaphus
11-25-09, 01:20 PM
Thanks again for your reply and of course I hope it's also useful to PeterD and others. PeterD have you had any luck?

If you could PM me a Doctors recommendation, that would be good. My husband had one in London, but never sent back some card that he should have.

I'm a EU citizen, but don't know if that makes a difference for insurance and I'll have BUPA through my husband who's British and works for a London based company. We'll go back to the UK permanently early next year.

Depression is the co-morbid, but I don't think insurance would know it's preexisting unless I told them? But, I could be wrong.

Up until this point - I haven't had much success finding my passion or with work, but I'm hopeful.

I was diagnosed ADD-Inattentive the first time and moderate to severe ADHD in the second diagnosis, but I don't know if that was Inattentive or Combined. I personally think I'm Combined with more Inattentive symptoms. I've only recently been fairly consistent with taking Adderall IR (instant release). I am drawn to the fact that you have the option of not taking it. I have 'experimented' with between 5mg and 20mg. I have never taken 20mg in one dose. That's the maximum amount I've taken over a day. I thought the 5mg didn't really work, 10 made me feel 'weird' and 15 was the right amount. I've reconsidered that and yesterday took 5mg at 10 am then another 5mg at 2pm. I meant to do the same thing today, but at 10 am thought I don't want to, but just changed my mind a little while ago at 12. I am going to try my best to be consistent with this for at least a week and then reflect on the week. I don't know if it works since I don't have experience with any other. It seems to help me with motivation, but I don't know yet if it helps with focus?

Once in the UK, I would be willing to try Dexedrine. It might be better for me?

bahhhh
11-26-09, 05:08 PM
Up until this point - I haven't had much success finding my passion or with work, but I'm hopeful.

I was diagnosed ADD-Inattentive the first time and moderate to severe ADHD in the second diagnosis, but I don't know if that was Inattentive or Combined. I personally think I'm Combined with more Inattentive symptoms. I've only recently been fairly consistent with taking Adderall IR (instant release). I am drawn to the fact that you have the option of not taking it. I have 'experimented' with between 5mg and 20mg. I have never taken 20mg in one dose. That's the maximum amount I've taken over a day. I thought the 5mg didn't really work, 10 made me feel 'weird' and 15 was the right amount. I've reconsidered that and yesterday took 5mg at 10 am then another 5mg at 2pm. I meant to do the same thing today, but at 10 am thought I don't want to, but just changed my mind a little while ago at 12. I am going to try my best to be consistent with this for at least a week and then reflect on the week. I don't know if it works since I don't have experience with any other. It seems to help me with motivation, but I don't know yet if it helps with focus?

Once in the UK, I would be willing to try Dexedrine. It might be better for me?

Thanks for sharing.

Chances are if you haven't been diagnosed as a child, you are ADD/I ;-)

You should be able to really 'feel' when the meds work. I'd start with finding the right dose to take in one go, then figure out how long til it wears off. It's probably more important to be consistent in 'how' you take it than 'how often' (I guess you know to avoid anything with citric acid, coffee, etc.) Also, the more often you take amphetamines, the quicker you build up tolerance, so it's usually better to not take it if you don't really need it. The effect also varies a lot depending on your levels of stress, quality and duration of sleep, the kind and quantity of food and other supplements you had, how much physical exercise, etc. A healthy lifestyle with regular exercise will give the meds a much smoother and predictable effect.

To check how it helps with focus & motivation, try doing something you'd usually find difficult/boring... if you constantly get distracted/side-tracked, ending up on the online forums instead of focusing on the task, then the meds probably don't work too well.

Re: Dex:
Only you will be able to tell if it's better for you (but probably you won't have a choice, unless you're happy to pay $10/tablet). Dex works brilliantly for me if I need energy and can afford to (ultra-hyper-)focus on work, but it does nothing for motivation. Usually 15mg in the morning lasts all day and for $10/month, worth the investment. Also being on ultra low dose avoids tolerance to build up too fast, a week off meds a couple times a year when I get the flu is enough to make it work long term.