Post by mobilephone on Mar 27, 2017 15:10:27 GMT
I requested my full medical record, both out of curiosity and also because I feel like I'm getting nowhere with my treatment options and am considering going private.
For nearly the past decade I have fought so hard.
It was a long arduous road to diagnosis, but since then treatment has been even harder:
- Saw a family therapist, they talked down to me and told me I was too smart to have ADHD. The note on the system is that he believes it's unlikely that I had ADHD because of very good academic performance at GCSE... How somebody with absolutely no training on the matter (his words) could make such an assertion is beyond me.
- Further, this therapist named somebody else in my class that was more likely to have it. They actually named somebody I knew and shared with me information that he was another one of his patients... At this point I stopped trusting this individual and refused to see him any more. I sorta wish I reported this at the time.
- I paid to see one of the Maudsley consultants privately. Received a diagnosis, interviewed my parent too, and initial prescription of Methylphenidate. I was 18 at the time, working part-time for £7 per hour and trying to balance my studies with commuting 15 miles away for school. I basically used all the money I saved since I was 12 to afford this (my family could not otherwise afford)
- My GP obviously refused to prescribe as they didn't recognise adult ADHD, and I have no obvious history of attention problems as a child. (More on this in a mo)
- Had to wait 6 months to see the psychiatrist. They initially agreed to prescribe Concerta (Methylphenidate XR). Medical records suggests psychiatrist 'feels I have ADHD'. (That's something, I guess)
- I didn't really get on with the Concerta - it worked when I needed it for my studies, but it numbed me. It really dampens my creativity and reduces my vocabulary to that of a 10 year old. I love being able to use different words when I speak, but on Concerta I always find myself feeling numbed and floundering to find even the most basic words. Not being able to express myself on Concerta is a seriously damaging side effect, far more than the on-edge feeling.
- Multiple times I have started, stopped, and re-started Concerta. Each time was a struggle, and each time the same side effects put me off. This happened over the course of about 3 years.
- Recently, I asked my GP to refer me back to the psychiatrist to see about getting a different treatment option.
- The Psychiatrist refused the referral. 'All ADHD medications give the same side effects'... We will not be offering the patient an appointment.
I am livid.
Could you imagine if you applied that logic to anti-depressants? (Which they keep trying to put me back on after trying 4 unsucessfully). All anti-depressants give similar side effects, so we shouldn't try for another.
So, I requested my medical record and found something from when I was aged 3. (I had delayed speech and language development, including speech therapy as a child - this is very evident in my record, but was never considered to be part of ADHD because I also had dozens of ear infections, grommets etc. and their assumption has obviously been that these speech and development problems were due to not being able to hear.
"attention span reduced and language skills up to a year delayed"
Right there in my file, aged nearly 3 years old.
The majority of my audiology tests (when I did not have an ear infection) came back as being fine. So what on earth could have been causing the speech and language development delays?! I wonder...
I am so angry. For years they've been fobbing me off that I couldn't possibly have Adult ADHD, and there has been at least some significant evidence of it on the system in the records the entire time.
Things that have been (potentially/casually) linked to ADHD by research, that I have had noted in my report:
- Ear infections (glue ear)
- Bed wetting (up to aged 11ish)
- Speech and language development delays
- "Reduced attention span"
- Insomnia
- Anxiety & Depression (co-morbid?)
Probably going to go private again, and start the battle to get the NHS to prescribe whatever gets sorted there. I've tried Dexedrine before (illegally sourced), and it is far better than Concerta. It doesn't make me feel on edge, it doesn't affect my ability to think creatively, and it does help my attention symptoms.
I'm so desperate I've even considered sourcing amphetamine salts, testing them via a harm-reduction lab (WEDINOS), and then making my own capsules for about 10p each. Because this way would be about £750 cheaper (before private prescription costs) than going down the private referral route.
/rant
For nearly the past decade I have fought so hard.
It was a long arduous road to diagnosis, but since then treatment has been even harder:
- Saw a family therapist, they talked down to me and told me I was too smart to have ADHD. The note on the system is that he believes it's unlikely that I had ADHD because of very good academic performance at GCSE... How somebody with absolutely no training on the matter (his words) could make such an assertion is beyond me.
- Further, this therapist named somebody else in my class that was more likely to have it. They actually named somebody I knew and shared with me information that he was another one of his patients... At this point I stopped trusting this individual and refused to see him any more. I sorta wish I reported this at the time.
- I paid to see one of the Maudsley consultants privately. Received a diagnosis, interviewed my parent too, and initial prescription of Methylphenidate. I was 18 at the time, working part-time for £7 per hour and trying to balance my studies with commuting 15 miles away for school. I basically used all the money I saved since I was 12 to afford this (my family could not otherwise afford)
- My GP obviously refused to prescribe as they didn't recognise adult ADHD, and I have no obvious history of attention problems as a child. (More on this in a mo)
- Had to wait 6 months to see the psychiatrist. They initially agreed to prescribe Concerta (Methylphenidate XR). Medical records suggests psychiatrist 'feels I have ADHD'. (That's something, I guess)
- I didn't really get on with the Concerta - it worked when I needed it for my studies, but it numbed me. It really dampens my creativity and reduces my vocabulary to that of a 10 year old. I love being able to use different words when I speak, but on Concerta I always find myself feeling numbed and floundering to find even the most basic words. Not being able to express myself on Concerta is a seriously damaging side effect, far more than the on-edge feeling.
- Multiple times I have started, stopped, and re-started Concerta. Each time was a struggle, and each time the same side effects put me off. This happened over the course of about 3 years.
- Recently, I asked my GP to refer me back to the psychiatrist to see about getting a different treatment option.
- The Psychiatrist refused the referral. 'All ADHD medications give the same side effects'... We will not be offering the patient an appointment.
I am livid.
Could you imagine if you applied that logic to anti-depressants? (Which they keep trying to put me back on after trying 4 unsucessfully). All anti-depressants give similar side effects, so we shouldn't try for another.
So, I requested my medical record and found something from when I was aged 3. (I had delayed speech and language development, including speech therapy as a child - this is very evident in my record, but was never considered to be part of ADHD because I also had dozens of ear infections, grommets etc. and their assumption has obviously been that these speech and development problems were due to not being able to hear.
"attention span reduced and language skills up to a year delayed"
Right there in my file, aged nearly 3 years old.
The majority of my audiology tests (when I did not have an ear infection) came back as being fine. So what on earth could have been causing the speech and language development delays?! I wonder...
I am so angry. For years they've been fobbing me off that I couldn't possibly have Adult ADHD, and there has been at least some significant evidence of it on the system in the records the entire time.
Things that have been (potentially/casually) linked to ADHD by research, that I have had noted in my report:
- Ear infections (glue ear)
- Bed wetting (up to aged 11ish)
- Speech and language development delays
- "Reduced attention span"
- Insomnia
- Anxiety & Depression (co-morbid?)
Probably going to go private again, and start the battle to get the NHS to prescribe whatever gets sorted there. I've tried Dexedrine before (illegally sourced), and it is far better than Concerta. It doesn't make me feel on edge, it doesn't affect my ability to think creatively, and it does help my attention symptoms.
I'm so desperate I've even considered sourcing amphetamine salts, testing them via a harm-reduction lab (WEDINOS), and then making my own capsules for about 10p each. Because this way would be about £750 cheaper (before private prescription costs) than going down the private referral route.
/rant