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#41 Henry G

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Posted 18 March 2009 - 05:44 AM

I've sent the letter but I've shorten it a lot.

I've cut out the "Explaining myself"

And I've also cut out the part:

I also would like to add that I have found the instructions from the different HMRC sources to be confusing.
  • The Original Officer advised me to seek my GP to email him, instead of asking me to deal with the Review Team directly which would have saved me time and energy.
  • I was confused as to what was meant by "I am not the legal owner of the package". I understand now what it means within context
I have been trying to fax you the faxed copy of the written authority as signed by mother to speed up the process but your fax number did not answer. Possibly because it is switched off after working hours. So, I will try again, tomorrow (17 March 2009)

Reason I've cut those two main parts out where .. I did not wake up very alert and couldn't revise soberly whether the letter would be effect with my complains.

And so, while still in doubt - I opt to delete them just in case, just in case it makes things worse than better.

Note: They could make things better! But I wasn't sure at the time, so had to play "safer"

My N and N-phases brings me to be:

risk-averse: When dealing with official things

risk-seeking: When not dealing with official things


So for example, when I am talking with a friend, or even posting a message to a forum - I am not risk-averse. I act first then think later.

But when am writing a letter to an authority - I act first then delete things later.

OK .. don't know if I made any sense, but it is nice not to feel so worried now.

Am pretty sleepy though. Today am finding hard to wake up. Maybe am tired of all the chasing? The saga was energy-intensive. Again hope some good comes out of it.

Hugs to you sleepless sleeper. Hope all is OK.

#42 Henry G

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Posted 18 March 2009 - 06:14 AM

I just would like to add how "scary" this is.

I think I've mention that I know the inner life and soul of search engines. And if needed, I may have to use that as my very last resort to protest my case.

My "power" (if that is an apt term) is such, that even without trying I've managed to score search results for keywords: HM Customs, medicines, amphetamines, ritalin, narcolepsy

Imagine then if I did try. I would probably get the term "HM Customs" itself on the first page.

I personally have nothing against the HMRC itself. But sometimes that one person representing and acting and meant to be serving the public can bring the Agency a very bad name.

#43 Henry G

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Posted 18 March 2009 - 06:59 AM

I have received their decision.

That before, they even allowed further documents to be received.

As I've sent the extra documents yesterday but received their decision today.

The decision was not to restore my medication.

Also that I should not import any medication in future.

#44 Henry G

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Posted 18 March 2009 - 08:05 AM

This is their reply (with my comments in black)

Dear Mr Gilbert,

Review of the decision not to restore your seized drugs


Thank you for your letter of 29 January 2009 in which you ask for a review of the decision from Customs not to restore the goods described below:



Description
________________________Quantity________Do Customs
___________________________________________________Still Have it?

_____________________________________________________________________

Ritalin tablets (methylphenidate)____120_____________Yes
Anfetamina tablets (amphetamine)_____130_____________Yes

_____________________________________________________________________

I was not involved in either the seizure or the original decision that I have now reviewed. I have treated your letter as a valid request to conduct a review in accordance with the provisions of sections 14 and 15 of, and Schedule 5 to the Finance Act 1994. The law allows me to confirm, withdraw or vary the original decision.

I have now completed my review and confirm the original decision that:

the tablets should not be restored to you.

I set out below a summary of the background to your case; Customs policy on the restoration of seized controlled drug; the reasons for my decision; and your further rights of appeal.

Background

From documents available to me, my understanding of your case is as follows: -
On 13 January 2009 at the XYZ Post Depot, a parcel from Brazil and addressed to you was intercepted. Customs Officers examined the parcel and found it to contained the goods described above.

Both Ritalin and amphetamine are class B drugs under schedule 4 part II of the Misuse of Drugs Regulation 2001 and as such as prohibited imports
to the UK.

>
OK, so a child with ADHD carrying Ritalin arriving from Switzerland should have his mother detained accordingly to your interpretation to the law!

Furthermore, a Narcoleptic - a famous one such as Harold M Ickes known to administer Amphetamines to control his Narcolepsy condition should also be detained according to you.


The parcel was therefore seized under section 139 of the Customs & Excise Management Act 1979 as liable to forfeiture under section 49 (1) b of that Act.

>
.. I am too tired, I will type in the rest complete later.
I have nothing more to say at this point.


#45 sleepless sleeper

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Posted 18 March 2009 - 12:11 PM

Henry, you state Imagine then if I did try. It seems that you have more than tried. I think that you've done an outstanding job ESPECIALLY considering that you don't have the right meds. I can't believe those bast3rds have done this to you. I REALLY WANT TO DO something for you, and I know that I can't. I am so sorry. THOSE BAST3RDS!!!!!!!!!!!! that man is a dillweed. D-I-L-L-W-E-E-D eating mf'er. I am SO mad for you. I swear that if I could I'd fly across the ocean for you and SPANK that b1tch.

Baby, I'm SO SORRY. I just would like to add how "scary" this is. It must be terrifying for you. Damn, I'm scared for you. Is it possible to go back to Brazilia for a while? You are in my thoughts, as usual. Much love and hugs. My heart is so yours right now. This is such an awful and debilitating disease if you don't have the right meds or if the meds don't work for you. You can have every last bit of strength and energy that I have.

#46 sleepless sleeper

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Posted 18 March 2009 - 12:13 PM

OUTRAGE

#47 sunrisemoon

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Posted 19 March 2009 - 12:31 AM

Wow, that's both disturbing and disgusting. I am angry for you.

I don't normally condone causing a scene of any kind, but you need to take this further....you don't have the energy yourself, so you need to find an advocate in parliament or on television, or somewhere you can get your voice heard.

I'm sorry you're having to go through this.

#48 Henry G

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Posted 19 March 2009 - 10:48 AM

QUOTE (sunrisemoon @ Mar 19 2009, 05:31 AM) <{POST_SNAPBACK}>
Wow, that's both disturbing and disgusting. I am angry for you.

I don't normally condone causing a scene of any kind, but you need to take this further....you don't have the energy yourself, so you need to find an advocate in parliament or on television, or somewhere you can get your voice heard.

I'm sorry you're having to go through this.


What saddens me is what seems to be happening to the UK itself.

More and more ignorant laws are being passed - that label the citizen a criminal before anything else.

It is in fact scary. And reminds me of "1984" - a very bleak sad film I watched when young. It is a book of Orson Wells which I intend to read soon.

There is however a more "comical", entertaining, you may want to watch ; it's called V for Vendetta -- and talk roughly about the same things.

"People should not be afraid of their government - it is the government that should be afraid of their people"

The way I see is this:

The State does not want you to get well, really.
Because you being well - means you are better able to "think", to "act", to "see" injustice, to "protest" accordingly.

If you are well and healthy, you are a threat to the State.
The State is better of if you are just moribund, functional but not wholly so .. not too bright, not too alert, and definitely not endowed with full human consciousness.

I may be digressing here a bit and finding how to make my jumbled thoughts more concrete and relevant.

What I am saying (or trying to say) is that:

It feels they don't want people to be completely healthy anymore.
But people should oblige only to sanctioned treatment the State can provide.
Dare not seek other channels
Because if you do - Hell will break lose.

Read the rest of the letter (Hope I have energy to type some more now). Some of the things the HM Customer Buddy writes is beyond belief.

#49 eww

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Posted 19 March 2009 - 11:09 AM

That's crap Henry. In order for it to be a proper review they need to allow you time to submit supporting documents. I know they can be particularly stupid about this sort of thing. Does the letter include a number (other than a toll free or general line) that you can contact in regards to the decision? Do you have the information about the subsection that allows you to import that class of drug with a valid prescription?

I agree about making a stink about this. YOU ARE IN THE RIGHT. Remember that. Perhaps the exact methods you were using weren't the ones exactly outlined, but the spirit of the law is with you. If you feel you've run out of options working with the system, go outside of it.

A man with a debilitating neurological condition being denied medication would be a good story in a country obsessed with the "nanny state". Just saying. wink.gif

#50 Henry G

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Posted 19 March 2009 - 11:17 AM

ps: The letter is really long. I will try and summarise it soon, or choose parts

my other alternative is to seek an independant appeal - which is truly bureacratic, I have 30 days to do that.

and the Brazilian Consulate.

To rephrase my intent:

I want to be able to secure my importation of medicine from Brazil, because I agree with them better. And so far haven't been able to receive exactly the same over here.

I need to safeguard any future importation because say I am seen by a neurologist in Brazil and am prescribed the better medicine, and I began taking them there what do I do? Do I throw them in the bin prior to entering the UK?

I understand that some believe that technically I should be receiving the treatment here in the UK and not from abroad. My previous personal experience has not been a satisfactory one. Perhaps I should have pushed the doctors here to prescribe me exactly what I respond better:

- Wellbutrin / Zyban
- Ritalin Short Acting
- Amphetamine Sulphate

What happened was that I do not like "pushing" doctors. I am not a drug pusher!!
I respect them and prefer to talk about things. But understand that here maybe it works differently.

I often oblige with a doctor saying: "Yes, but I am not acquainted with that medicine use for Narcolepsy. And besides do you believe you could get by without it's use? If you had no other option, say? ... Yes? I thought so! Ok so let's just stick with one medication - it makes life easier for us"

If I had my way, I would just free the doctors to go on attending other patients without having to disturb them every 15 months.

If there was a way to start a campaign for Narcolepsy Awareness in the UK

There is a lot of contradictions.

For example Amphetamine Sulphate is not commonly prescribed?

Why on Earth? Not?

Oh Because you see - we see it in films and in movies, you know Amphetamines = Speed = Bad. Doesn't look good, doesn't matter if it might be less harmful or even less dangerous! We care about image only - not the patient! We care about the media!

Zolpidem / Ambien .. I mean that is a nasty medicine. Why not make that illegal?
There is more evidence that it's long term usage is incredibly harmful, unsafe and dangerous.

Provigil .. I undestand some people get on by OK with that medicine. But how come not most? I would not say that medicine should be made illegal ever. But compared to Amphetamine Sulphate it appears way more toxic and damaging.

My belief is that a patient with Narcolepsy should be given as much choice as possible to juggle and control his condition.

All the medicines for Narcolepsy treats only partially one aspect of the disease.

Narcolepsy has NO cure !! NO perfect treatment.

So an array of medicine and treatments should be made available.

Trust the patient if you can (I know that can be hard for most doctors!)

Respect and trust and you will be surprised. All a N person wants to do is to function better in society.

Give the patient wider options, every N person is different, it is very possible you both discover an optimal treatment.

Neglect that and you neglect your duty in lessening suffering and empowering a citizen. A patient you never know, may one day help you even safe your own life in return.

(Apologies this time: if my thoughts are not as clear. Non-Narcoleptic persons reading this. Judge not by mode of writing or lack of cohesion. But try and capture the essence of the argument I am trying to convey)

#51 sleepless sleeper

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Posted 19 March 2009 - 11:23 AM

Can you be given an extension of time considering that our disability has a way of making some of us a bit slow to get things taken care of?

I agree about finding a representative, someone that knows the system. It'll be worth the money, headaches, sleep deprivation saved, down the road.

I will still come and spank that b1tch if need be! smile.gif

#52 Henry G

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Posted 19 March 2009 - 11:36 AM

QUOTE (sleepless sleeper @ Mar 19 2009, 04:23 PM) <{POST_SNAPBACK}>
Can you be given an extension of time considering that our disability has a way of making some of us a bit slow to get things taken care of?


We did try.
My Legal Advisors seemed to have tried.
They didn't care. In fact even acted before allowing me to fill in the form they have sent!

QUOTE
I agree about finding a representative, someone that knows the system. It'll be worth the money, headaches, sleep deprivation saved, down the road.


I have no money whatsoever. I have been receiving small donation like $100 from friends so as not to starve even.

So am that broke.

My mother has helped me by sending some money from Brazil. But I can't be asking her that all the time. She is not rich either and it makes me feel terrible.

I suffer from the classical by-products of a Narcoleptic:

- Financial Troubles
- Relationship Problems (or lack of them!)
- Outcasted from Society
- Branded a Junky
- or Branded Mad, or depressed, etc
- Inability to find work or be employed

I do not surrender to these by-products . I do not say OK fine this is what I have and now this is what I am ...

But I understand those knock on my door regularly and often enter the house and prolong their stay.

I am just trying to survive and play this game of chess which if Life to the best of my hopes and abilities.

It saddens me how humans are so very quick to judge. We all do it (maybe a brain quirk!)

But one thing I often tell people.
If I am properly cared for and my health is improved optimally, I can be highly productive. Possibly even more than most people.
But I need a chance of that - to prove myself.

If I am discarded and let to rot - then that is what is going to happen - I will rot.

It is a shame.
Because I have abilities and faculties that could be put to very good constructive use. Do not let those die forever.

But I can only be constructive and help other people and even contribute to society. If my health and condition is properly looked after.

Otherwise it is too much to ask for me. I often fail even the most basic tasks. And spiral downwards. It is a shame. Because I could do so much, visionary - stuff beyond people's most fantastic dreams.

#53 Henry G

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Posted 19 March 2009 - 11:45 AM

QUOTE (eww @ Mar 19 2009, 04:09 PM) <{POST_SNAPBACK}>
That's crap Henry. In order for it to be a proper review they need to allow you time to submit supporting documents. I know they can be particularly stupid about this sort of thing. Does the letter include a number (other than a toll free or general line) that you can contact in regards to the decision? Do you have the information about the subsection that allows you to import that class of drug with a valid prescription?

I agree about making a stink about this. YOU ARE IN THE RIGHT. Remember that. Perhaps the exact methods you were using weren't the ones exactly outlined, but the spirit of the law is with you. If you feel you've run out of options working with the system, go outside of it.

A man with a debilitating neurological condition being denied medication would be a good story in a country obsessed with the "nanny state". Just saying. wink.gif


English people are heading for trouble.

It soon will become a "Police State"

Scary

Also really wish I could type the whole letter. I may do - if I get bouts of energy.

People must read the prententiousness of the guy - basically saying they are protecting me since: what if the tablets are fake?

God how I wish I had my better meds now. I would have typed the entire (very long) letter

#54 Henry G

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Posted 19 March 2009 - 11:55 AM

excerpt:

The Commissioners' general policy is that such items should not normally be restored. Each case is examined on its merits to determine whether or not restoration may be offered exceptionally, however, it would be extremely unlikely for such drugs would be restored, especially as it is a criminal offence to posses them in the UK. Furthermore, there is no guarantee that foreign drugs conform to UK standards or indeed that they are not fakes.


See?

Firstly - if you are a Narcoleptic - you are a CRIMINAL !! ok?

And if you receive medicines from a foreign but STATE-OWNED Hospital abroad (as it is in my case) - they need to protect you.

You know STATE-OWNED HOSPITALS from other countries do not match UK Stardands. [see link]

All other countries are likely to produce LOWER-STANDARD Medicines and perhaps even FAKES!

WHat a JOKer

#55 eww

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Posted 19 March 2009 - 01:40 PM

I love the bit about addiction. Research has shown that the same hypocretin that narcoleptics are low on (or without) attributes to pleasure-seeking actions in addiction. Meaning that without hypocretin, people are far less likely to suffer from addiction. So... yeah. That explains why pwn are able to use highly addictive substances like amphetamines with addiction only being a rare problem.

And I would think that they would have less of a problem that your PROPERLY PRESCRIBED MEDICATION came from Brazil than if you were reliant on the NHS. The the UK government would have to pay not only for all the diagnostic tests that the new drs would no doubt want to do but the prescription as well. So... you getting treatment in Brazil actually saves them money. Plus, it's not like those drugs aren't allowed to be prescribed in the UK. I believe (I could be wrong) that there are pwn in the UK that have used those medications. There is nothing on that list outside the bounds of reasonable treatment options for pwn all over the world.

That last excerpt is obviously a form letter with no connection or understanding of your specific circumstances. It's not taking into account that it's not illegal to have them if they are prescribed and the fact that they came in their original packaging (I'm assuming your mum didn't just dump all the pills into a big box and send it lol) from a hospital pharmacy sent by your mother (like she's going to rip you off for your meds lol) means the issue of them being fakes is ridiculous. Clearly when it states "Each case is examined on its merits to determine whether or not restoration may be offered" they are not referring to this case. Because obviously they haven't. If they had you'd have your meds back by now.


I would be just infuriated enough to make a "discrimination against disability" claim or threaten to until they had someone in a position to help sit down and discuss the issue with me. And I don't mean a jr officer with no power at all who would explain the reasons, I mean someone who had the ability to change the decision.


As a side note, last night I was at a local bookstore and was looking through a "Complete Guide to Drugs in Canada" or somesuch, which basically is supposed to have detailed information on all prescription and non-prescription drugs in the country. I was extremely frustrated to find the "information" about Modafinil pretty much said "used in the treatment of narcolepsy". That's it. One line. Half a sentence. Xyrem (or GHB or Sodium Oxybate) wasn't even in the book and the part on amphetamines was basically discussing speed and meth. Nothing about N. To add to my ire, I did find detailed information on all of the above in a book called "Buzzed" a book about drug use and abuse. Nothing like looking up your presciption to discover you're either a tweaker or a "smart drug" user. Although I gotta say, Modafinil doesn't make me very smart.

#56 eww

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Posted 19 March 2009 - 01:43 PM

I would be tempted to just go to a newspaper or television station and fall asleep on someone. Once I woke up and they asked what the hell, I would simply say that I have N and was getting treatment from abroad but the government confiscated my medication and won't give them back. Then fall asleep again. It's a poor news source that couldn't make a story with that. tongue.gif

#57 Henry G

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Posted 19 March 2009 - 02:41 PM

QUOTE (eww @ Mar 19 2009, 06:43 PM) <{POST_SNAPBACK}>
I would be tempted to just go to a newspaper or television station and fall asleep on someone. Once I woke up and they asked what the hell, I would simply say that I have N and was getting treatment from abroad but the government confiscated my medication and won't give them back. Then fall asleep again. It's a poor news source that couldn't make a story with that. tongue.gif


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.

I have traced the second idiot who peer-reviewed my case.

He is a retired pensioner, that often works part-time. I suppose it is cheaper for the HM Review team to use a retired pensioner part-time than hiring a fresh young mind.

Note the person who also blocked my medicine, also seemed to be losing his faculties due to old age.

I have no problem with older people (soon I will be one myself .. ok not soon, but in time) .. But what happens in old age (and to anyone!) you become inflexible with a petrified (hopefully not putrified) mind-set: this is it, that is that, never different - and nothing else matters. They should make these grumpy old Officers retire earlier and definitely never keep them around

The letter carries on:

There are no circumstances in which prohibited class B drugs may be imported into the UK by private individuals.

I cannot believe that is true. But maybe it is and people don't know?

Again the case of a mother carrying her child's prescription of Ritalin.
Or the Narcoleptic ambassador entering the UK with a stash of prescribed medical amphetamines.

As to both HM Officers; retired or soon-to-be retired, I wish you this:

May your ignorance and obstinancy haunt you on an operating table in an NHS hospital theatre. May you be lab rats for clueless Junior Doctors.

May you both be prescribed medicines that conform to UK standards.

And when that day come (and it sure will) - may they be prolonged just like mine have been. When that day come ... Just think of me wink.gif

#58 eww

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Posted 19 March 2009 - 03:39 PM

I'm sorry if you thought my tongue-in-cheek suggestion was against your personal code of conduct. I didn't mean you should exaggerate or play up your symptoms. I don't know where you are in London, but getting anywhere in London is exhausting and for me it would be highly likely that I would require a nap once I got to my destination. I would imagine one of the issues customs has about your meds is the negative association with those drugs in particular. Even if intellectually they realize it is treatment for a condition, emotionally they are still stuck in the "you don't NEED them" mindset. My point wasn't to over exaggerate the symptoms for attention or pity, it was to show your symptoms as they are for exactly the reason you said. You will be saying to people "look I cannot do this now I am really suffering from N". I probably wouldn't do this myself if I were in your position though because I'd be looking for the next plane to Brazil. lol.

It is not true that no class B drug can be imported. True, it is a general rule that they can't be imported, but there are exceptions, prescriptions being one of them.

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.


#59 eww

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Posted 19 March 2009 - 03:41 PM

And I would say the issue with the people who denied your case is less with them being close to retirement and old age and more to do with simply not caring. You may be surprised how many young people are rigid in their beliefs and actions, especially if it was a new job or they fear being fired. lol.

#60 Henry G

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Posted 19 March 2009 - 03:54 PM

QUOTE (eww @ Mar 19 2009, 08:41 PM) <{POST_SNAPBACK}>
And I would say the issue with the people who denied your case is less with them being close to retirement and old age and more to do with simply not caring. You may be surprised how many young people are rigid in their beliefs and actions, especially if it was a new job or they fear being fired. lol.


My experience with the HM has been like this so far: if the person is young they would be polite and helping, otherwise they wouldn't be!

I think my observing the old-age thing - is because I will head there soon, I am soon to be 40!!

And I want to understand I myself will start becoming rigid and set on my own ways and views.

I do not know if it is possible to guard against that but I hope so . Because I don't want to make the same mistakes . I would hate myself.

The Officers are aged around 60 to 70s. A guess from a photo of one.