Hi, I recently went to my doctor as I have suffered with Chronic Nerve Pain for the past 12 years, and have spent the last 4 years being prescribed Methadone by my GP for the Chronic Pain condition. This has allowed me to work, however it also makes me very tired and also very angry.
I have been smoking Cannibis for the past year or so, and have managed to reduce the Methadone I am taking from 40mg per day to just 1.5mg per day and I am hoping to be off methadone completely soon.

The only way I have managed to achieve this is by smoking Cannibis and after explaining this to my doctor she agreed to refer me to a specialist to see if Sativex could be prescribed.

I received a letter today from the specialist, saying he is 'unable' to prescribe sativex. I am under the impression that this is not the truth as the licencing conditions have been changed, but if anyone could shed some light on this it would be greatly appreciated.

Why are you asking us? Does the letter state that Sativex cannot be prescribed due to licensing conditions? if not then I don't see how asking anyone on here can help

The logical step surely is to write back to the specialist and ask 'why is he unable to prescribe sativex?' for your condition

Go back to the specialist and ask why not, as it is a prescribeable drug, albeit unlicensed like many medications.

Thats what I thought. I just thought that someone on here may have experience of trying to get Sativex. Thats why I posted on here.

Theres prob a few peeps who have tried to get it and been knocked back.

Why not grow your own weed? It would prob work out cheaper in the long run to be honest, prescriptions aint cheap these days and after you setup costs you'll prob find it works out around £10 an Oz.

Can i ask what cannabis you've been smoking? Grass or soapbar?

They are if you live in Wales, they're free

Didn't know that do you know off hand how much it is in England and Scotland?

I think the last time i had to get one which was a good couple of years ago at least it was around £6

England £7.10 I think

I wonder how long one prescription of sativex lasts for

I've been trying to get hold of cannabis-based pharmaceuticals for some time, so I might be able to help.

There are a couple of reasons why your specialist may say what he said, but the first thing you should do is what Danzig said - write and ask why your specialist is unable to prescribe it.

To clarify the situation, Sativex is currently an unlicensed medicine. That doesn't mean it is not available, because British doctors are allowed to prescribe it to patients whom they think may benefit, the licensing thing is something to do with different phases of medical testing.

However, Sativex has not completed all necessary hoop-jumping for a general license. According to GW Pharmaceuticals:



Therein might be the problem. Although my GP is allowed to prescribe Sativex, she refuses because she doesn't know anything about the drug and if there are any problems, due to the restrictions GW Pharma points to in the quote above, she is personally responsible. No doctor wants to risk a lawsuit, and so will not prescribe an unknown drug for which disastrous results they cannot be indemnified against. Indeed, it's just as unreasonable to expect a doctor to accept the risk of prescribing unfamiliar and unlicensed medicines as it is to expect a plasterer to fix the plumbing.

In which case you could ask to be referred to someone who is willing to prescribe it, but the initial approach would be to require your specialist to elucidate on the decision. I can't understand why it would be preferable to keep you on something as vicious as methadone, compared to the alternative.

Ed

I smoke Bud mostly, however ive only been able to get hold of soapbar for the past few weeks. Dont know many dealers round here and have to drive 30 miles to get it, but it is good stuff when they have bud. I would guess soapbar is much worse for my health than green.

I agree with everything you say, especially the last paragraph. What I cant get my head round, is why put someone at age 18 on Methadone, when they have never taken heroin. Surely it is going to do more damage to my body long term than weed. But weed is smoked, therefore bad for my health. thats the main reason I want the spray, plus so I can use it during the day. Currently I have to have a few joints every night to get me through the day. the pain starts to build in the afternoon until it is very bad by the end of the day. Then home, joint and pain free again, so I know 100% that cannabis works for my condition.

i agree with the advice already given, that you need the specialist to give his/her reasons for being unable to prescribe.
and remember there is a big difference between CAN'T PRESCRIBE and WON'T PRESCRIBE.

good luck Mintball

I suspect that methadone was prescribed with the main concern being its comparatively low cost: less than half the cost of similarly-effective pharmaceuticals. If this is the case, then I have a serious problem with this kind of cost-cutting. Methadone is far-and-away a worse drug than heroin, in terms of toxicity and especially in terms of withdrawal. According to accounts from both heroin and methadone addicts, cold turkey isn't pleasant by any stretch, but methadone withdrawal is hell on earth. So I am very suspicious of a specialist who uses methadone as a primary pain intervention – can I ask what other analgesia was tried before methadone was prescribed? In any case, I have an intrinsic problem with the prescription of methadone to heroin addicts, when diamorphine (clinical heroin) is an significantly safer drug, albeit more expensive. A diamorphine management regime is gentler and safer, and fulfils more ‘harm-reduction’ criteria than methadone. Based on the slim evidence before me, I’d tentatively conclude that prescribing methadone to an 18 year old with no prior use of heroin, is medical GBH. However I’m not a doctor, so maybe there are solid reasons I haven't the experience or knowledge to consider.



Yes, that is certain. Methadone has a very long list of side-effects and health-risks, including the risk of overdose. In terms of direct lethality, about 100 people die of methadone every year in the UK; compared to exactly zero from cannabis.



The jury is out on exactly what risks smoked weed occasions. Some reports point to lung cancer as a potential danger, other studies indicate the in vitro reduction of tumours which would imply an anti-carcinogenic effect. If there are such risks - and you're sensible to assume there are until otherwise demonstrated - vaporised cannabis would be much better for you, eating it even more so, and sativex spray excellent in terms of harm-reduction.

But with regard to soapbar, don’t be too sure that what you are smoking is even cannabis; soapbar is notorious for containing a litany of other unknown adulterants, and some has even been reported to contain no cannabis at all. Many at UK420 would urge you to avoid it altogether, since it is impossible to say what might be in the stuff.

Here’s hoping you get some joy from your healthcare providers…

Ed

I've rattled a few cages at my recent pain management sessions.

I basically gave the nurse the website for GW, the phone number they need to call & told them about how they simply have to fill out a form, then GW assess whether they can release it, I also gave them a name of a prescribing doctor. This maybe not that simple, but I convinced the nurse at least

I phoned about a week later & amazingly got an appointment for the following week! Now, there could be two reasons why I they want to see me fast. One could be that my anethnetist can't wait to hand me a prescription? The other could be that they don't want me to get my hopes up & want to shut me up?

The positive thing was that my GP was the one that recommended I hound pain management.

Sativex is not in the latest (Nov 08) GP medicine book which lists every available medicine

Although for me Sativex/Cannabis is not enough on it's own for night time & getting to sleep (Morphine struggles too though! ) it does help significantly during the day, it relaxes me & uplifts me, I rarely suffer during the day when using cannabis, more so with Sativex & can get on with more things.

A Morphine/Sativex combo seems to work nicely for me in the short time I had to try it so I do hope I have success at next weeks appointment.

Good luck

well done mate you need applauding for getting down to 1.5ml from 40 no mean feat hope you get your script but dont go back to methadone horrible drug

I agree Methadone is horrible drug...............if your really only doing 1.5ml Id say knock it on the head....it must
be pretty much psychological at those levels.........and GET Growing.........Well done though mate Methadone is
imo much harder to kick than the drugs its supposed to save you from......I thought it was impossible to get
Methadone thru a normal GP............that old home Office thing??.....Still Good Luck mate.......M..........
P.S.................Methadone was invented in Hitlers Nazi Germany.................

really cant get my head round that they will prescribe methadone and not savitex

jeez what are they thinking about ?? not your well being thats for sure ...

my gf did a detox from methadone 5 years ago and still suffers insomnia now ..you want to be getting rid of that stuff bud thats not helping you at all .......

peppi

Actually the jury has already delivered its verdict when it comes to lung cancer risk. Several studies involving large numbers of people have concluded that smoking cannabis does not increase the risk of getting lung cancer above that of a non-smoker.

I know about those, but there are also conflicting studies claiming the opposite...

Do you have any links for those?

Hi there,

if you are concerned about smoking it, buy a vaporizer. You can use it during the day as well, if you buy a wee one.

check this out. But you can't use a soapbar with this. You need nicely grinded green.

im trying to get a sativex script soon. because i to suffer from severe pain. and opiate,s make me worse.my doctor said she would refer me and just waiting to hear from them.i was adiccted to hard drugs for a long time and been clean now for 5 years thanx to the godly herb. hope we all have sum luck and get the script

Hi again AKPOG

So how did you get on with your attempts to get Sativex prescribed mate?

Just as an idea, you might try organisations that deal with GP's intimately (ie recognise those whom are sympathetic).

That might include trusts, GP organisations (the practice manager or nurse might be able to help you on that one) and also
patient trusts/orgs and not neccessarily limited to your own complaint/condition, as some patient orgs are more proactive
than others. (You might try PALS - Patient Advice Liaiason Service.)

I hope this points you in the right direction - one thing's for sure - plenty of telephone calls and leg-work!
But I wish you well.

vangraffe

I got told I cannot have it buddy

But, I did tell my Pain Management Anethnetist how he would need to go about it without issues & he is on the case for me. Last time I spoke to him was on the phone & he said he has emailed the appropriate people & is awaiting response. I really do think he is trying for me too, as he is a nice guy & if he didn't want to bother he would have said no full stop & not got my hopes up by saying he is trying for me.

Only time will tell, as they are fully aware I can halve my daytime morphene dose if I have Sativex. It does not do me for nightime, but to only have to take morphene in the night time along with Gabapentin would be a bliss.

To clarify, Sativex helps my Osteoarthritis, Morphene helps with the dull aching & severe muscle spasms & Gabapentin will hopefully soothe the nerve pain. Gabapentin is a new one for me so I won't know if that helps well enough until I've been taking it for a week or so & escalated to the required dose. I believe if I need alot of Gabapentin then they will put me on Pregabalin.

I have had Pregabalin before, but only on it's own, what I need is a concoction of Sativex, Morphene & whatever sorts the sharp agonising nerve pain everytime I try to rest.

But before anyone goes rushing off to their GP claiming they need it then I'm sad to say it won't happen, nor help your cause.

NO GP CAN PRESCRIBE SATIVEX, YOU MUST BE ON SOME KIND OF PAIN MANAGEMENT SO A HIGHER QUALIFIED SURGEON ETC CAN PRESCRIBE BASED ON YOUR REQUIREMENTS & EVEN THEN NO GUARANTEE

Sorry I shouted that but it needs to be noted

Maryjane, Danzig & Dikki are the experts regarding Sativex here on 420

:peace:

Again, thanks Akpog.
I'm using the Pregabalin (Lyrica), it's another one of those you have to ease into as well, and like any of these drugs, the help they give is only partial. But since having it, I haven't actually been completely off my feet during a flare-up, and that's been for the best part of a year now. Last summer I was even riding a push-bike for a while.
It's been bloody close though, with awful pains in the feet of all places last time, but never quite as severe as it was a while back. (Don't you dread saying these things though, in case you're simply tempting fate? )
So with luck mate, it'll be at least as effective for you. Fingers crossed anyway.
Mine's Ankylosing Spondylitis, by the way. Top and bottom of the spine, and damaged hips, shoulder and knee from motor-cycle accidents.


All the best with it Akpog.

I'm gutted for you - I'll have another look again this week and come back if that's ok?

vangraffe

Well, its been a while since I posted this topic so I thought I would update you on my progress.

I have pretty much been told by the main man at the Walton Centre that they will not prescribe sativex - it costs too much and they have been told by the PCT that they cannot prescribe it for those reasons - why am I paying my money into the national health service when they wont help my health???

I am still taking the methadone, have slipped a little and ended up going up a bit to about 5mg per day which is still much less than the 40 I was on, and just helps take the edge off the pain during the day when im working and obviously cannot smoke weed.

I wish they actually understood what it was like to be in my situation, but they dont seem to care.

My GP could if he was a good man, prescribe sativex and stop the methadone. I however have not found a GP in my area that is willing to stick their neck out and actually help me for once. I am 23 ffs, wish I could lead a normal life but at least I have something to keep my mind occupied - growing! - See my grow diary...

Is anyone else out their with a pain condition managed to get sativex?

Regards

Mint

gotta wait till june for my missus to see pain specialist as the gp told her the pct said it was too expensive, so gotta get the go ahead from pain spec. first.
got a feeling they probably say no though even tho her gp is willing to prescribe it but well see wot happens.

we have problems as well
its a game of tennis at moment between gp and specialist
latest is gp has stated they are willing to go into a joint care agreement with the specialist
so now the specialist is applying to exceptional treatments i think he called it.
once the specialist prescribes it once
the GP will happily renew the scripts

more delay

and a huge mountain climbed, not long now

I had a whole heap of hoops to jump through before I was even referred to the pain clinic. My obstacle course took the following trajectory:

Jan 2008, I had been trying to get my painkiller prescription upped for the previous two years, eventually increasing the amounts I was taking to 300mg each day, which doesn't do my liver any favours. And still the pain relief was rubbish.

I told my GP that I was now using cannabis when I could fid it, and this was useful in helping my pain and helping me to cut down the toxic pharmaceuticals. My GP was only concerned about the possibility of addiction to cannabis (not too clued in about cannabis then.) I asked her for a prescription of Sativex, but she had not heard of it so she declined to prescribe something she doesn't know.

May 2008: My grow was discovered when the wine bar down the road burned down and the police burst in to evacuate the block. My doctor was horrified when I told her, but now realised I was serious about my pain. She referred me to the pain clinic, whereas previously she had been reluctant to do so. It troubles me that I needed to go as far as to get arrested for production of cannabis before I was taken seriously.

From that point on, I visited the pain clinic several times, meeting with the pain relief specialist as well as the consultant psychiatrist attached to the pain clinic. It became swiftly obvious to them that cannabis is the right drug for me, and so within a matter of a few months I had possession of two letters recommending Sativex, one from the pain consultant, and one from the psychiatrist. The consultant declared that he would be happy to prescribe Sativex either on the NHS, or if funding was withheld, at my own expense. The psychiatrist fully supported this prescription.

My GP received the two letters a month ago, and has now sent them, along with her own agreement, to the Primary Care Trust to ask for funding.

I shall find out on Wednesday of next week whether I will be prescribed Sativex on the NHS - to pay for it myself would be prohibitive, since I am now living on disability benefits...

Fingers crossed...

Thats what they said to me. Too expensive. Would cost around £5000 per year, and they are unwilling to spend that on something they are unsure if it works. I said I know that cannabis works for my pain, so why wouldnt Sativix work? Even asked for a trial for a month to see how it goes, but they are unwilling to do that also.
I am paying for the national health service, I work, I could just as easily go on disability and not work, but I would rather work and pay my way, but to do that I have to smoke cannabis. Surely Sativex is better for me than smoking it, but not according to the docs...

Dont trust them as far as I could throw them!

what a load of complete bollocks, I wonder how much people on here pay to grow a years supply of thc, it's cant be anywhere close to £5000 ..in comparison the government and it's resources should be able to produce and supply sativex for pennies, im sure part of the pricing is to stop sativex being easily available, meanwhile they can justify court decisions against medi growers, then cover their arses with limited sativex licensing

Prof Young and Dr Boggild (head honchos @ Walton neuro centre) are certainly NOT pro-Sativex.
In fact during 2006, with regards to Sativex, I approached Dr Boggild as a private patient via The Countess of Chester Hospital which is where he seems to earn his main crust (as opposed to his NHS patients @ Walton).
The guy is a MUPPET of the highest order.

£5000/ year ?? not necessarily. Afaik my script costs under £2500/year which roughly equates to 1 bottle/week.


A change of doctor and possible out of area referral is your next step imo. this is to be repeated until you meet a care team who are more forward thinking.


best of luck dude

Prof Nurmaco was the guy I saw, not sure if the spelling is right.

He just was not a pro sativex kinda guy.

Not sure where to go now...

Will try your idea of an out of area referral. The thing is, i take 600mg pregabolin a day at the moment, and I know that is an expensive drug at about £1 per tablet, so thats not the cheapest of drugs, and methadone, surely that is bad for you too, sativex must be better than that stuff!!!

then why on earth are you poisoning yourself with all that shite they are prescribing you.

sorry for being curt mintball

no hard feelings

If it costs £2500/year for Sativex then someone is taking some extreme amount of piss.

If you needed any more proof that pharma is only interested in money...

Hi;

I have the result from my Primary Care Trust, who have refused funding for me to be prescribed Sativex.

In July of last year, the Underminister for Policing, Security and Drugs, Vernon Coaker, responded to my MP Harry Cohen, after Cohen wrote to him about my case. Coaker said:



And indeed, he is right. Under the Misuse of Drugs Act, my GP, my Pain Consultant and my Pain Clinic Psychiatrist have had no problems at all prescribing this drug to me, and will not face prosecution under the MDA for doing so. But the problem is not the MDA, it is the cash reserves of the PCT. To smooth the way for the medical profession to prescribe cannabis derivatives, but to refuse funding for those who actually need the drug, is disingenuous. It's analagous to the government telling people they can grow as much cannabis as they want providing they buy the necessary tax stamps - but then the state refuses to print any stamps.

So thanks to Mr. Coaker, I am delighted that I can have as much Sativex as I want, without getting into trouble and without my medical team getting prosecuted under the MDA. But I'd bet anyone fifty pee that Coaker knew that the PCT wouldn't pay for any of it.

Ed

I'm sorry to hear that Eddie..

Cheers Andy. On the positive side, this refusal strengthens my mitigation if I get convicted.

That is very true eddie, same for me really.

I have tried the legal route by seeing my gp, pain specialist, the works. Its all in my records so it is good mitigation in case of a bust.

I have tried legally, tried dealers, however dont want to line their pockets and get crap weed from them, so would rather not fund them by growing my own medication instead of poisoning my body with the drugs they want to prescribe me.

The nhs offers a choose and book scheme

do your own research and find a consultant willing to prescribe Sativex out of area, many have followed this model and gained sativex.

write to your mep and ask why such a diverse post code lottery?

Pct;s have no grounds for stopping finance, its about the red light scheme, after this has been resolved by the patients need etc, they should support

To be honest I can only see the that the consultants and doctors have in the above posts, fearing the pct.

Hi,

After requesting the letter from the PCT from my GP, I have received their justification for rejecting my application for Sativex.


Thoughts? Any pointers as to how I appeal this?

Ed

It would appear from the wording that they're refusing to supply on reason of cost which isn't allowed under current guidelines.

the PCT are lying Eddie

There are money pots available to cover the most expensive of medicines licensed or not.

Your consultant has to go back to pct saying its the cheaper option yadda yadda

When a consultant argues for it the PCT has no legs to stand on.

I was at my Pain Management Clinic yesterday. Very interesting. The chap was very helpful, until I spoke of Sativex. He is "Not allowed to prescribe it." Gentle pressure from me made him very uncomfortbale, I came away feeling he was under a cosh from above and that he was very unhappy with it. Mind you, he did offer me ... wait for it .... and keep in mind I am already on quite large doses of Morphine 24/7 ...... Ketamin! He also offered me an infusion of IV Lignocaine and some tranquillizer I think it was. I turned them all down, which made him smile.
He came across as a really sound chap who wanted to help. He took a lot of time with me, and went further to explain some of my symptoms than anyone else. But he was clearly under a very hefty anti-Sativex hammer. He certainly wasn't anti-cannabis per se, judging from our conversation. That's what makes me think there's a higher power doing the "no Sativex" routine.

Mad though, isn't it? I can have "K" for the asking, and even have IV infusions of local anaesthics with high-end tranqs thrown in. But Sativex? Not in a million years!

Time my MP earned his expenses account

If he's anything like mine Arnie he'll accept whatever bs the PCT give him and say there's nothing he can do.

I was horrified at the amount of Trammadol (sp) I had to refuse during my recent stay on the local surgical ward

Pharmaceutical dispensarys, where good nurses are told that "a good nurse is as bad as a bad nurse".