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#61 Henry G

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Posted 19 March 2009 - 03:57 PM

QUOTE (eww @ Mar 19 2009, 08:39 PM) <{POST_SNAPBACK}>
I'm sorry if you thought my tongue-in-cheek suggestion was against your personal code of conduct.


No, not at all.

And in fact I like if ppl are tongue-and-cheek

I just keep re-asserting that "code of conduct" like a mantra.
Every so often it switches itself on like a tannoy announcement.
It goes on loop.
I can't help it! It's automatic .. it's a programmed mind-set.. I am getting old sad.gif

#62 Henry G

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Posted 19 March 2009 - 04:11 PM

QUOTE (eww @ Mar 19 2009, 08:39 PM) <{POST_SNAPBACK}>
You said in one of your earlier posts that your UK GP was aware of the medications from Brazil, is it possible that he can set something up with your neurologist there? So maybe your GP can act as a proxy prescriber? Or have the medications sent directly from the pharmacy in Brazil to the GPs office or a pharmacy in the UK? Then it's not a "private individual" importing.


No because NHS GPs are terrified of being sued.

So they only do things where they can cover their backs.

Also in the UK, they do not care about any medical document from any other country. A sort of arrogance. Any medical certificate abroad is basically void here.

In fact, my GP has gone to great lengths to help with this case, I believed she wouldn't help so I was surprised.
I was surprised she emailed the Officer.
I was almost sure she would refuse.
Because as said GPs are very very afraid of anything and everything.
Which is why they do not prescribe anything unless endorsed and sactioned by a Hospital or Specialist in the NHS,
They may prescribe Calpol though in extreme emergencies.

If I had money?

Oh yes, I would be OK.

A private neurologist here would can prescribe anything.

Damn, I've heard of doctors prescribing even medicinal cocaine to real addicts.
Doctors prescribing: Cocaine!
I mean ex-addicts get Methadone and stuff, those are NASTY meds.
Methadone = very close to Heroin.

But we are not drug addicts we are patients.
And need our medicines to be functional!

Damn, we DON't even get a BUZZ from our meds!
Our Narcolepsy itself doesn't allow us! So whatever "good time" people are hoping to deny us. Don't worry - we do NOT GET ANY!

Maybe some might even get Jealous???

Why should these sleepy people get DRUGS and trip all they want to their Hearts' Content?

Bad news: We don't! Scientifically proven.

We are like Cats, unable to discern sweetness in sugar.

The cost of me being seen by a private Narcolepsy Specialist is astronomical.
It is something like $10K a year.

But yes, if you pay - you get anything you want. Anything.

I would get all my meds here and no need to import ever.

Catch 22.

#63 Henry G

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Posted 19 March 2009 - 04:33 PM

Lastly I have worked with doctors. Have helped doctors, gave them invaluable advice mostly for free.

Drew medical sketches for nothing. Redrew their business cards.
Touched up on their logos. Redesigned their brochures.

Resolving their headaches of their website being constantly offline.

I went out of my way.

But should I expect people to help in return?

Nah!

They are cowards.

Sure - if they really wanted they could set up a proxy. They would know a friend that would.

But again, as said, they are cowards.

And then they all disappear, I am "radioactive" now - Henry problems with HMRC? Let's run! Let's have nothing more to do with him!

I do my bit, I don't expect anything back anymore.
I've grown almost accustomed to expect very little (in fact zero) from non-N people.

#64 sleepless sleeper

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Posted 19 March 2009 - 05:18 PM

it is a criminal offence to posses them in the UK.



sooo, does that mean that any doctor that has prescribed them will be brought up on charges? orrrr, any pharmacy, hospital that has this drug in their possession will be charged with possession with intent to sell? Or any pharmaceutical company that produces them in UK will be charged with manufacture with intent to distribute, sell, possession of drug paraphenalia, etc? Should stock holders be charged with recieving drug money? I say find a good reporter.


--I have a sort of personal code of conduct towards my condition. I am not allowed to ever exagerate my conditions or play them be it for a good or bad cause. Reason being: if ever I tell people look I cannot do this now I am really suffering from N. They should truly believe I am not making it up.---

You shouldn't have to make up anything. About ten years ago, there was a black panther running loose and I found it by a creek. We were only yards from each other. I called the police and they didn't believe me. I called animal control and they didn't believe me. I was really afraid because I was positive that it had gone into someone's basement. Can you imagine coming home to a large cat in your house? Anyway, no one believed me. I called the local TV station and they listened. They wanted to do a story, but I ended up backing out becuase all I could think of was a bunch of rednecks running around with rifles. Anyway, yours is a good story because it is a story of something that many others in the UK are becoming familiar with: police state medical services. hence: denial of and also regulating who and who cannot receive help. I'm spending too much time on this. Sorry. Today is not a good focus/typing day.

#65 Henry G

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Posted 19 March 2009 - 06:55 PM

I wouldn't like to be famous sad.gif

Any news report at this stage could taint my case. As I still have another appeal to go through and the consulate to try.

#66 sunrisemoon

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Posted 21 March 2009 - 02:20 AM

Hi Henry,

I'm either slow or just stupid, but it only now occurred to me that my boss is a doctor (forensic pathologist, actually, who's also studied law) who practiced in the UK. (I'm in Australia.) He's the Deputy Director of my company and Associate Professor (of forensic medicine) at a major Uni....and well connected. With your permission, I'd like to ask him if he knows of any way, or anyone who might be able to help you get heard.

What do you think?

#67 Henry G

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Posted 21 March 2009 - 05:19 AM

QUOTE (sunrisemoon @ Mar 21 2009, 07:20 AM) <{POST_SNAPBACK}>
Hi Henry,

I'm either slow or just stupid, but it only now occurred to me that my boss is a doctor (forensic pathologist, actually, who's also studied law) who practiced in the UK. (I'm in Australia.) He's the Deputy Director of my company and Associate Professor (of forensic medicine) at a major Uni....and well connected. With your permission, I'd like to ask him if he knows of any way, or anyone who might be able to help you get heard.

What do you think?


Yes, please!

That is very kind of you - thanks for the offer.

#68 eww

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Posted 21 March 2009 - 02:10 PM

Henry I know it must be hard. But there are good people out there (even doctors LOL). Keep your chin up. And I wouldn't give up on the proxy idea. It might take finagling, but I would bet that your GP would at least help hook you up with someone who could help. They sound like a good egg.

Sunrise... you're awesome.

#69 sunrisemoon

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Posted 21 March 2009 - 09:36 PM

Ok, cool. smile.gif

Whereabouts are you in the UK, Henry?....so we can try to find someone close.

#70 Henry G

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Posted 22 March 2009 - 06:18 AM

QUOTE (sunrisemoon @ Mar 22 2009, 02:36 AM) <{POST_SNAPBACK}>
Ok, cool. smile.gif

Whereabouts are you in the UK, Henry?....so we can try to find someone close.


I am in London.

#71 Henry G

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Posted 22 March 2009 - 10:23 AM

QUOTE (Henry G @ Mar 22 2009, 11:18 AM) <{POST_SNAPBACK}>
I am in London.


The medicines I want to import are as follows:

10mg Ritalin (Methylphenidate) produced by Novartis

5mg Benzidrine Extract (Amphetamine Sulfate) manufactured by a Brazilian State Hospital

150mg Wellbutrin (aka Zyban in the UK; Buproprion) manufactured by Glaxosmithkline

Although my intake fluctuates (less during Summer, more during Winter) my average dosage of the above are as follows:

4 x 10mg Ritalin - take as needed.

6 x 5mg Benzindrine - take as needed.

1 x 150mg Wellbutrin - take only one pill a day


Those medicines, I have been taking for over 6 years.

I have never suffered any short or long-term problems.
I have used them responsibily, looked after and cared for them.
I have never abused them.
I have never developed any spiral addiction or constantly increasing tolerance levels.

This proves that these have been the best safest treatment for my Narcolepsy to this very date.

Why break or deny that which has given me no harm but has helped me a lot instead?

But the alternative medicines and treatment I have been prescribed in the UK have been consistently beset with problems.

What message were those HM Officers trying to convey?
Stick with us or be damned?

What if one of these HM Officers suddenly developed a terminal illness but couldn't get their needed medicine from the NHS.
Say it was too expensive, the NHS now deny expensive drugs!
So what if they could however import from a generic from another country but at a discount price. And what if these were also scheduled drugs??

I bet beyond a doubt, they would pull exactly the same strings but in their favour - this time. Securing a better treatment for themselves or of a loved family member. Hypocrisy rules.

They were never exercising fairness or justice.
But they protect their own, all members of a private club.

#72 Henry G

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Posted 22 March 2009 - 10:44 AM

ps: to others reading, it has been quite a testing time for me, and I want to apologise any offence I may have committed unduly. Again, I have been pretty stress and under those times we are even more likely to be stupid ourselves. I don't want to offend anyone who is unrelated to all this. If you have felt offended by my harsh comments on a previous post, please forgive me. I don't like to be pushed to a worse side of me. I just want to be well and relaxed again. And can't wait for the day all this is over. So I can spend my better time and energy on more positive constructive things.

#73 dogdreams

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Posted 22 March 2009 - 05:15 PM

None of your replies have sounded harsh or offensive to me.

#74 eww

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Posted 22 March 2009 - 09:50 PM

I don't think any of your responses have been cause for offense for anyone other than those involved in denying you your meds. And in any case, were you to be a little harsh, I think everyone here could definitely understand a little bit of irritability under the circumstances. biggrin.gif

#75 sunrisemoon

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Posted 24 March 2009 - 07:02 PM

Hi Henry,

I spoke with my boss, but unfortunately, he doesn't know anyone specifically who might be able to help you out. He said you really need to be dealing with a neuro or respiratory specialist (although they're more inclined to be more knowledgable with sleep apnoea et al). He knows the trouble I had getting a doc to really listen to me and, like you, modafinil was baaaaaaad for me and Dex (or in your case, Ritalin) is the only thing that truly helps, so he's pretty understanding of your predicament in that respect.

He did say he's not surprised they confiscated your meds. It's silly, really.....you can take this class of drugs with you if you visit a country and it's prescribed to you, but you can't have them sent to you if you're already in the country.

So...having said that, I go back to my previous suggestion of getting some public figure to help your cause. Write an open letter in the paper (we can help keep it concise etc if you like), or get an interview with a paper, write to your local government member, news stations, anyone who'll listen.

Someone has to be out there who is able to go into bat for you when you have no energy to do so yourself.

#76 Henry G

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Posted 26 March 2009 - 10:40 PM

QUOTE (sunrisemoon @ Mar 25 2009, 12:02 AM) <{POST_SNAPBACK}>
Hi Henry,

I spoke with my boss, but unfortunately, he doesn't know anyone specifically who might be able to help you out. He said you really need to be dealing with a neuro or respiratory specialist (although they're more inclined to be more knowledgable with sleep apnoea et al). He knows the trouble I had getting a doc to really listen to me and, like you, modafinil was baaaaaaad for me and Dex (or in your case, Ritalin) is the only thing that truly helps, so he's pretty understanding of your predicament in that respect.


Ritalin XL was also pretty bad for me too.

But I seemed to have secured repeat prescriptions for Ritalin in the UK indefinitely.
That is my bare minimum medicine requirement for survival.

My other medicines would in fact be "boosters"

Wellbutrin / Zyban / Buproprion is a medium anti-depressant and mild-stimulant. It helps to a certain extent fight off depression brought by extreme fatigue and sleep-deprivation (ie bad sleep)

Amphetamine Sulphate is a mild-stimulant. Which helped me top up energy levels, without me having to resort to more Ritalin. The mode of action was also different. Also having two different stimulants meant that my body wouldn't get too used to just one.

I would like in future, the Hospital Doctor here in London, to put me on Dexedrine - to see if it helps.

Also would like them to put me on Wellbutrin.

And once that is done, finito.
I won't bother anyone anymore, no HM Customs, no free Legal Advice Centre, no Citizen Advice Bureau .. and my GP won't see me for a very long time.


QUOTE
He did say he's not surprised they confiscated your meds. It's silly, really.....you can take this class of drugs with you if you visit a country and it's prescribed to you, but you can't have them sent to you if you're already in the country.


The way it was played out looked very suspicious.

I've just been going over my letters. Even the very first letter talks about an attached form - which was NOT included.

It makes you wonder if it wasn't really planned, a conspiracy. But I will give them the element of the doubt and attribute it to downright incompetence.

You know .. 6 years of receiving medications from Brazil. Oh sorry "Class B Drugs!!" (as the HM Officer carry on insisting) .. and receiving those packages bi-monthly.

So tell me, over 36 packages have been sent to my address containing scheduled substances .. why not a single one was intercepted before?

With fear of terrorism, and suspicious packages, etc ... Why wasn't these CLEARLY LABELLED with RITALIN / AMPHETAMINE on the outside not intercepted?

And if the packages are sent by registered post. Aren't the contents clearly labelled electronically also? Don't the Officers read on their monitors: Package contains X and Y?

So again, why was a blind eye turned then but not now?

Tricky question?

The first Officer told me on the phone it was because I was "very lucky"!

Nah. He is very lucky. Because he won't have to face an INTERNAL INVESTIGATION.
Either due to serious incompetence or to the possibility that in fact my package was violated and it's content stolen by one of the staff.

The way the whole thing played out - makes things look very very suspicious.

And if a junkie staff member did steal my medicines, poor chap, will have a *BEEP*ty time. You cannot get high on 5mg of Amphetamines.

You'd probably have to munch 200 of these pills or melt your nostrils in a futile attempt.

These are not street drugs. They are MEDICATION. Big difference.

QUOTE
So...having said that, I go back to my previous suggestion of getting some public figure to help your cause. Write an open letter in the paper (we can help keep it concise etc if you like), or get an interview with a paper, write to your local government member, news stations, anyone who'll listen.


I don't have a strong motive anymore. In fact, the second Officer did a good move by sending me a second letter. I received today:

I have examined all of the documents that you sent me but must confirm my conclusion that it is just not possible to restore class B drugs to you.

That basically voids one of the motives for my second appeal. That the Officer acted before reviewing documents that they were told would be sent by the post. The Officer also acted before receiving a Letter of Authority from my mother.

But since he acted now, before I posted my application for second appeal, I am left with a weaker case.

QUOTE
Someone has to be out there who is able to go into bat for you when you have no energy to do so yourself.


The energy they stole from me could warm a village of Inuits for a whole month.

I have other urgent priorities to meet now. I haven't decided my next step - what to do though.

If Narcolepsy in London was better funded or managed by the NHS, I wouldn't need to import my medication from Brazil. Why give my own mother the hassle?

The Officers must understand, that by being prescribed these "Class B Drugs" now in the UK - I was legitimatelly entitled to the package all along.

#77 eww

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Posted 26 March 2009 - 11:33 PM

I have to admit that it had occurred to me that your package got "lost" hence the adamant refusal to return the legitimately prescribed medication. And I would also pose those serious questions to the review board about the fact that clearly labeled amphetamines were delivered to you for such a long time before it was declared illegal.

#78 sunrisemoon

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Posted 26 March 2009 - 11:45 PM

"And if a junkie staff member did steal my medicines, poor chap, will have a *BEEP*ty time. You cannot get high on 5mg of Amphetamines.

You'd probably have to munch 200 of these pills or melt your nostrils in a futile attempt."


You're right about this. The lady at the N help line here told me it would take about 220+ pills to have the same effect as the street stuff. That's an awful lot of effort for a short high. Oh, and imagine the dry mouth you'd have! Ick!

Hey, I giggled out loud at your Inuit village comment. biggrin.gif

#79 Henry G

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Posted 30 March 2009 - 07:32 AM

The Generic Ritalin being prescribed in the UK is messing me up - so what to do?

Why don't they give me the real Ritalin by Novartis?

Is it worth arguing now?

Why everything the UK does, in terms of medical care .. is so cheap and *BEEP*ty?

They won't help me here .... I am too much of a bother now.

If only I could find a private doctor and pay for the real medicine.
I would pay for the real Ritalin.

At first I thought, maybe it's my imagination since "rationally" it doesn't make sense since Ritalin is Ritalin - be it generic or trademark.

And that is what they would argue also. You know "lazy thinking" or "blame the patient making things up" attitude.

But that is not so,
I searched the internet and saw lot's of people complaining.

http://www.nickh.org/add/addopin4.html

http://www.wrongplan...postt91824.html

http://learningdisab...bbs-ld/601.html

I am getting severe lower abdominal pains, at first I thought it was because it was the Extended-Release Version .. so after much effort got that change .. and it is wasn't just that, but the Generic Ritalin itself messes you up.

Note: If you do take Generic Ritalin, try the normal Ritalin by Novartis, ie the original one, and see if you feel better or not. Mind you it is weaker but at least more gentle to the system