Sign in to follow this  
Followers 0
henryg

Hm Customs

74 posts in this topic

Man, they'll say anything to keep those meds. I wonder if they've already 'disposed' of the 'evidence' personally. Hmmmm....makes you wonder, doesn't it. <_<

Share this post


Link to post
Share on other sites

Sorry they are doing this. makes me want to emigrate!

I've been pootling about for potentially useful people for if getting help feels right. I phoned up one place about human rights and disability discrimination issues, trying to ask them in a vague, hypothetical way if this area was something they covered or not, (they couldn't) I was wanting to save you awake-time by ruling out the no-use ones. But they just wanted details and I felt like I was interfering when I don't know you. So I didn't call any of these places.

Liberty

Share this post


Link to post
Share on other sites

Thanks for the support.

I will seek all channels as any energy becomes available.

I will seek the Brazilian Embassy and Consulate.

It is my right also a Brazilian citizen to receive treatment from my country of birth.

It is indiscrimenate and abhorrant to play with a patient with narcolepsy like that.

I am hoping to have strength to carry on with th e battle so that others do not suffer in silence.

I am seriously considering publishing my story to the web.

Name and shame the system

I have a domain name: narcolepsia.com.br and with my skills can easily make my story and keywords reach Google's top position

keywords: HM customs, medicine, import, confiscation, HM officers, drugs seizure, narcolepsy, ritalin .. and so on.

I just want my medicines.

I don't want the fight to get any messier.

But see am running out of alternatives.

I'll have to resort to my last weapons.

And that could mean my unmatched (sorry for my lack of humbleness) power over search engines.

hugs to you all.

Share this post


Link to post
Share on other sites

I think it's a cover up.

OK, here is my theory:

* SOmeone stole my medicines

* SO instead of avoiding legal issues, they opted to buy themselves time by creating this whole diversion

* They are protected by Bureacracy, internal collegues and the State.

* So they are orchestrating this whole facade, knowing that will be nearly impossible for me to bring them to justice. Going through courts will be a massive headache.

It makes sense.

For 6 years my medicines have never been blocked.

But there has been delays ie (possibly them inspecting)

The HM Officer (which I won't name yet) obvioulsy very very obviously have seen and dealt with my package before.

But this time when my package went missing, the HM Officer thought it would be much better if he come up with the Legal crap - blaming on me instead, buying himself time.

Once you try to sue or fight for your rights - it's years and lots of energy and not to mention money before anything get resolved (if ever)

Think about it.

You are a Customer Officer, your job is on the line and your reputation.

And by nature you care very little about other people.

Would you own up to a package (with controlled substance) gone missing?

This explains why another HM operator said packages with meds are never blocked. It is their procedure not to intervene in sensitive medical cases.

It is very obvious. He never blocked it before because he knew it would also be a headache for him

BUt owning up package went missing is a much greater headache.

Anyway just a theory. I am no Columbo really.

But I have this thing: I always find the real truth in the end.

(It just takes a bit of time)

Share this post


Link to post
Share on other sites

Yeah...I am proud too...

It's complete BS any time we have to struggle for meds that actually work.

Don't give in, Henry!

All who have helped...You all make me so proud!

-Stu

Share this post


Link to post
Share on other sites

Time is ticking and I have until the 21st of March to resend my plea.

I went to the Citizen's Advice Bureau, no meds that day - couldn't believe I made it .. anyway I did - and the lady was very nice - she then said I should (hurry up) and one of the free Legal Solicitor's at 7pm on the same day.

I apologised saying I couldn't .. and really I couldn't, I was at the C.A.B at 10am, no meds and no way would I have enough energy to seek an appointment at 7pm somewhere else in town.

Anyway, tried going next week.

The lady from the C.A.B, said that I should really try and make it at 6pm because the place gets crowded and I may not get a hearing.

Suffice to say, I arrived at 6.30am .. and guess what? The place was already full, they closed the door and was sending people home.

I walked in anyway, I was confident that I wouldn't make it anyway, at least should have a sit to rest and give up all of this - cos really too much energy. Faxes. Buying printers. Writing letters., etc

When this other lady was pushing the extra people to go home, I was about to oblige but just said: Look, could you just kindly read what they sent me. I have until the 21st March. Next week will be hard, it was lucky I made it today and next week might be a little too late. Also said I had Narcolepsy and have very little energy available during the day (I mean, i wasn't playing the poor guy, I was just saying the truth and in fact even accepting that I was going to be asked to go home anyway).

But I wasn't. And *BEEP*, I feel embarrassed saying this cos like I started to cry. But *BEEP* this been hard ya know. And the system all over against you - and you thinking why bother? But I did. Was there. And was going to be turned back home. Fine ok ...

She said: Going to have a word with my manager just stay there.

And this is the weird thing about UK .. WEIRD. Maybe America is the same?

Like you meet bastards and biatches, you meet nasty, thick, ignorant, petty, judging, stuck-up or messed-up people and all ...

.. And then you meet angels, like beautiful angels. Maybe there is no inbetween here. Maybe a person is so incredibly wonderfully nice - or just really really nasty.

I think Brazil is composed of "averages" (save doctors, most of them are mostly very nice, ethical, good people, humane)

So this Lawyer stayed longer in the office just to see me. Like almost 1 hour. I almost felt bad robbing her of her favourite soap opera time.

She again was very nice, but tell you what, while i was waiting in the chair - I thought this - if these people are really going to go all out of their way to help me, I shouldn't drain their energy and time. So what I did: was to organize all my documents in such a way - it would become easy peasy for them to read and understand and act accordingly.

I think she appreciated that. And she moved on fast, even though it was probably an hour 45 minutes? - others stayed with them for longer sometimes - like 2 hours going on and on about their pets and mothers and fleas and bed bug bites.

She gave me the instructions, I wrote it on the paper.

Basically she said that that legalese letter really meant this:

I am not the legal owner of the medicine because the legal owner is the person who first send it. Doh!

But I needed to fill in the Agent Authority form provided. Only thing is that, the HMRC did *not* provide the form!

This form I would then fax it to my mother in Brazil. She would fill it in. Fax it to me and then send it by post to the Review (Appeal) Team and all.

I received the form by fax today. Tried to fax it to the "Review Team" and no luck - probably office was closed. I thought faxes would be on 24 hours!

Anyway am preparing now extra documents and so on. And wrote my extra letter. Thing is - I do not know if I am being reasonable in the letter or if it reads wrongly.

So would like to ask you - if you have time that is. To have a look and see if it's OK.

I am going to send it tomorrow first thing.

It's hard not to kinda get emotional when you are upset feeling you've been treated pretty unfairly and all.

Next post is my letter ok?

Thanks

HG

Share this post


Link to post
Share on other sites

The letter:

==================

Dear Mrs XYZ,

Thank you for sending me the agent authority form by post.

I've managed to get my mother to fill in the form, sign and have it faxed back to me. I also instructed her to send the original to you by post from Brazil. Kindly, allow some time for you to receive her written form. I apologise for the delay but must stress I did not receive the agent form originally. I've also found the procedure of seeking legal advice challenging since I had no medicines with me at the time. With that, I hope I am granted some leniency concerning my deadline

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

Share this post


Link to post
Share on other sites

Hi Henry,

My name is Lorrie, and it's my husband that has Narcolepsy. I don't post here on the boards very often, but I do read the messages daily. I have been following you "saga" since the beginning and have been wondering how it has been going. I'm glad things might actually be getting somewhere. I've read through your letter and found 2 things that jumped out at me.

You said:

While it took me 2 months for me to get admitted to a Hospital Sleep Lab in the UK, it took over 2 years of waiting in the queue to repeat the same tests over here

Did you actually mean to say that it was 2 months to be seen at the Sleep Lab in Brazil?

And also, at the beginning of "Explaining Myself" you make mention of being a British Citizen, then several paragraphs later, you mention being a Brazilian Citizen. If I remember correctly, from a previous post, you stated that you had dual Citizenship. You may want to clarify that to the review board, perhaps in the first paragraph where you mention your Citizenship.

I hope that you will finally get this issue resolved. They sure don't make anything easy...do they? And, yes, Henry, there are angels out there.....sadly too few and far between....but often seem to show up just when you need them the most.

Good Luck,

Lorrie

Share this post


Link to post
Share on other sites

Hi Lorrie, thanks very much for you kindness and support.

I am really touched.

And I want to thank all of you. Your messages and concern. They have meant a lot to me.

hugs to all

I hope good comes out of all this. So that others do not go through the predicament or are treating that same way.

I am of the personal opinion that HM Customs Officer should resign. What a petty stupid ignorant fellow. Playing with people like that.

Let's see what comes out from this. Now it's a question of just sitting & waiting. Although I may go to the Brazilian Consulate next.

Share this post


Link to post
Share on other sites

Henry, I can't quite focus on the entire letter, and I'm SOOO sorry. Is there anything else that I can do to help? You've got my shoulder at least. I want to do more, though, and I'm really sorry.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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. ;)

Share this post


Link to post
Share on other sites

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)

Share this post


Link to post
Share on other sites

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! :)

Share this post


Link to post
Share on other sites
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!

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.

Share this post


Link to post
Share on other sites
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. ;)

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0