Sussex MS sufferers call for drug funding

Health bosses are refusing to allow people with multiple sclerosis the use of a cannabis-based drug to ease their symptoms.

Seven patients in Sussex have asked the county's primary care trusts for funding for Sativex treatment but all the applications were thrown out.

The PCTs say they are not satisfied the drug was effective and it would not be made available unless it was for exceptional circumstances.

The decision has been criticised by MS sufferers and the MS Society, who believe patients should be allowed to have the drug if they feel it can help them.

Sativex, an oral spray designed to reduce pain, costs £125 a bottle, which works out at about £11 a day for the average user.

It has been licensed by the Medicines and Healthcare Products Regulatory Authority but has yet to be considered by the National Institute of Health and Clinical Excellence.

This means PCTs make their own decision over whether or not to offer it A spokeswoman for Sussex's four PCTs said: “Difficult choices sometimes have to be made because demand for health care is growing and there is a finite amount of money available to spend.

“The NHS in Sussex aims to spend it wisely, and will therefore only pay for those treatments that are clinically effective and offer good value for money.

“A committee of health professionals evaluated Sativex and determined that the clinical effectiveness in the longer term had not been proven.

“Consequently, it will not be available to patients with MS in Sussex, except in exceptional circumstances through the individual funding request process.”

Should the PCTs offer Sativex? Tell us what you think below.

Comments (15)

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2:46pm Sat 4 Jun 11

MegA69 says...

Let patients at least try it. If no satisfactory response after a month of using it then no more. Cost effectiveness in patients with MS is a nonsense... alleviate suffering, or let them suffer and wish them dead so dead so they don't cost money - Sussex PCT supports the latter.
Let patients at least try it. If no satisfactory response after a month of using it then no more. Cost effectiveness in patients with MS is a nonsense... alleviate suffering, or let them suffer and wish them dead so dead so they don't cost money - Sussex PCT supports the latter. MegA69

2:47pm Sat 4 Jun 11

MegA69 says...

Let patients at least try it. If no satisfactory response after a month of using it then no more. Cost effectiveness in patients with MS is a nonsense... alleviate suffering, or let them suffer and wish them dead so they don't cost money - Sussex PCT supports the latter.
Let patients at least try it. If no satisfactory response after a month of using it then no more. Cost effectiveness in patients with MS is a nonsense... alleviate suffering, or let them suffer and wish them dead so they don't cost money - Sussex PCT supports the latter. MegA69

4:11pm Sat 4 Jun 11

a person says...

What a pity that some of the people that sit on or advise the county's primary care trusts
are not people that suffer from some of these illnesses..

If they had it themselves or knew someone who did suffer, then maybe they would not be so judgmental .

I agree with MegA69 let patients try it first to see if it helps them .
What a pity that some of the people that sit on or advise the county's primary care trusts are not people that suffer from some of these illnesses.. If they had it themselves or knew someone who did suffer, then maybe they would not be so judgmental . I agree with MegA69 let patients try it first to see if it helps them . a person

4:58pm Sat 4 Jun 11

Morpheus says...

The point about drug trials is that giving it a go for a month proves nothing. The evidence to say that it not effective should be published. They could just try a placebo they seem to work as well as the drugs in somecases.
The point about drug trials is that giving it a go for a month proves nothing. The evidence to say that it not effective should be published. They could just try a placebo they seem to work as well as the drugs in somecases. Morpheus

8:19pm Sat 4 Jun 11

bassy1 says...

"Sativex, an oral spray designed to reduce pain, costs £125 a bottle, which works out at about £11 a day for the average user."

It would be much cheaper to allow them to grow it. Might be too much fun though. And we can't be having fun now can we?
"Sativex, an oral spray designed to reduce pain, costs £125 a bottle, which works out at about £11 a day for the average user." It would be much cheaper to allow them to grow it. Might be too much fun though. And we can't be having fun now can we? bassy1

3:50pm Mon 6 Jun 11

Peter-Reynolds says...

Cannabis Law Reform (CLEAR) is a UK political party working to enable the urgent provision of medicinal cannabis on a doctor's prescription.
It is commonly misunderstood that Sativex IS cannabis. It is not some pharmaceutical extract. It is made out of the whole plant but sold at an extraordinarily high price - at least 10 times even what organised crime gangs sell street cannabis for.
DO NOT BE MISLED. Sativex and cannabis are pharmacologically identical.
CLEAR is running an ACCESS SATIVEX service in conjunction with Action4MS to identify where Sativex is available. See our website for further details: www.clear-uk.org.
Or contact at info@clear-uk.org
Please see www.clear
. It is made out of te
Cannabis Law Reform (CLEAR) is a UK political party working to enable the urgent provision of medicinal cannabis on a doctor's prescription. It is commonly misunderstood that Sativex IS cannabis. It is not some pharmaceutical extract. It is made out of the whole plant but sold at an extraordinarily high price - at least 10 times even what organised crime gangs sell street cannabis for. DO NOT BE MISLED. Sativex and cannabis are pharmacologically identical. CLEAR is running an ACCESS SATIVEX service in conjunction with Action4MS to identify where Sativex is available. See our website for further details: www.clear-uk.org. Or contact at info@clear-uk.org Please see www.clear . It is made out of te Peter-Reynolds

3:58pm Mon 6 Jun 11

Mafficker says...

"A committee of health professionals evaluated Sativex and determined that the clinical effectiveness in the longer term had not been proven."

They could have looked at the scientifically reviewed clinical evidence, which proves the case for cannabis beyond any doubt.

They cannot mean what they say. There is no controversy about cannabis' effectiveness. Therefore, only reason this committee can have convened is to reject the provision of Sativex.

This was a political decision to bolster the government's attacks on vulnerable people in the UK.
"A committee of health professionals evaluated Sativex and determined that the clinical effectiveness in the longer term had not been proven." They could have looked at the scientifically reviewed clinical evidence, which proves the case for cannabis beyond any doubt. They cannot mean what they say. There is no controversy about cannabis' effectiveness. Therefore, only reason this committee can have convened is to reject the provision of Sativex. This was a political decision to bolster the government's attacks on vulnerable people in the UK. Mafficker

4:09pm Mon 6 Jun 11

Stuart Thomson says...

I asked my doctor for Sativex, he said "no" and offered me morphine for pain relief...(I have MS). The main sticking point that i see is that if Sativex gets prescribes as a matter of course, then the government's arguments about the harm that cannabis causes will start to unravel and the general public might just get the chance to see what cannabis is capable of. There are large forces though, with vested interests trying to make sure that sativex doesn't get off the ground in this country.
I asked my doctor for Sativex, he said "no" and offered me morphine for pain relief...(I have MS). The main sticking point that i see is that if Sativex gets prescribes as a matter of course, then the government's arguments about the harm that cannabis causes will start to unravel and the general public might just get the chance to see what cannabis is capable of. There are large forces though, with vested interests trying to make sure that sativex doesn't get off the ground in this country. Stuart Thomson

4:10pm Mon 6 Jun 11

Stuart Thomson says...

ps: I live in West Sussex
ps: I live in West Sussex Stuart Thomson

4:42pm Mon 6 Jun 11

Peter-Reynolds says...

The extraordinary deception that the government is engaged in over cannabis is well illustrated by the fact that there is no warning about a danger of psychosis in the Sativex SPC, prescribing or patient information. There is a warning that it should not be used by anyone with symptoms of psychosis or mental illness but if, as David Cameron says, cannabis "leads to severe mental health problems", you would expect a prominent warning on the Sativex pack wouldn't you?
The extraordinary deception that the government is engaged in over cannabis is well illustrated by the fact that there is no warning about a danger of psychosis in the Sativex SPC, prescribing or patient information. There is a warning that it should not be used by anyone with symptoms of psychosis or mental illness but if, as David Cameron says, cannabis "leads to severe mental health problems", you would expect a prominent warning on the Sativex pack wouldn't you? Peter-Reynolds

4:49pm Mon 6 Jun 11

Dan-Bognor says...

It is despicable that people who are suffering are not allowed effective medication. The high price of Sativex is, I believe, simply an excuse to withhold this medication. The real problem is the deep rooted prejudice against cannabis fostered by nearly a hundred years of negative propaganda. Medical users should be allowed to grow some for themselves, that way it would save the N.H.S. a great deal of money, and many of the patients would be able to go out, maybe even do a job, instead og being house-bound.
It is despicable that people who are suffering are not allowed effective medication. The high price of Sativex is, I believe, simply an excuse to withhold this medication. The real problem is the deep rooted prejudice against cannabis fostered by nearly a hundred years of negative propaganda. Medical users should be allowed to grow some for themselves, that way it would save the N.H.S. a great deal of money, and many of the patients would be able to go out, maybe even do a job, instead og being house-bound. Dan-Bognor

5:04pm Mon 6 Jun 11

ravehat says...

“Difficult choices sometimes have to be made because demand for health care is growing"
am i the only one that is sick of hearing this every time sativex is required as a prescription.
would it not make sense to allow people who require it to grow it? do you think the law makes any difference if your in total pain? it would be far cheaper and basically the same thing just in different proportions. why is it when patients try to empower themselves then the medical world stamps its foot down?
notice 'A spokeswoman for Sussex's four PCTs" was used not the actual people/person who made the desicion had the guts to defend themselves. how cowardly an act is this. you have some people in medical world that get very offended when bring new info to the table. they seem to let there egos take control and make things as hard as humanly possible. with the stigma that surrounds sativax and cannabis based thearapy and the weakness of people in pain. certain medical proffessionals who are in control then hide behind this mask and use the procces to bully. this is an example of this. and it makes me sick. not only will refuse to issue the medicine, by refusing you continue the myth that it is not medicine. what is more important. helping those who are in need no matter how you feel or leaving people to live in pain just so you follow the status quo. could you not even just offer a 1 month trial to see if it helps and benifits the patient?
“Difficult choices sometimes have to be made because demand for health care is growing" am i the only one that is sick of hearing this every time sativex is required as a prescription. would it not make sense to allow people who require it to grow it? do you think the law makes any difference if your in total pain? it would be far cheaper and basically the same thing just in different proportions. why is it when patients try to empower themselves then the medical world stamps its foot down? notice 'A spokeswoman for Sussex's four PCTs" was used not the actual people/person who made the desicion had the guts to defend themselves. how cowardly an act is this. you have some people in medical world that get very offended when bring new info to the table. they seem to let there egos take control and make things as hard as humanly possible. with the stigma that surrounds sativax and cannabis based thearapy and the weakness of people in pain. certain medical proffessionals who are in control then hide behind this mask and use the procces to bully. this is an example of this. and it makes me sick. not only will refuse to issue the medicine, by refusing you continue the myth that it is not medicine. what is more important. helping those who are in need no matter how you feel or leaving people to live in pain just so you follow the status quo. could you not even just offer a 1 month trial to see if it helps and benifits the patient? ravehat

8:47pm Mon 6 Jun 11

chrisbb says...

How disgusting this Health Authority is denying people in pain a medicine that can alleviate their suffering.

I'm sure the real reason they are not allowing Sativex is because they know it is nothing more than a tincture of cannabis and they don't want to admit how effective herbal cannabis is as a medicine.
How disgusting this Health Authority is denying people in pain a medicine that can alleviate their suffering. I'm sure the real reason they are not allowing Sativex is because they know it is nothing more than a tincture of cannabis and they don't want to admit how effective herbal cannabis is as a medicine. chrisbb

6:27pm Wed 8 Jun 11

CannabisCure.co.uk says...

This is utterly outragous! I am sad that my own PCT is denying MS sufferers a medication that is effective and does work for their illness.

If they are certain of the fact that Sativex is not effective they should prescribe it to those 7 people and let them, in a month or agreed lenth of time tell the PCT that they were right and that Sativex does not work - dispite being Authorised in Canada since 2005 and also recently been granted authorisation in Australia, Middle East, North Africa and 6 countries in Europe such as Italy, Spain, Belgium and Germany.

Many of these European countries now have Herbal Medical Cannabis prescribable to patients suffereing from a wide range of illness like my own, Crohn's Disease where without Cannabis I spend my days couched over or on a a toilet throwing up or passing acid, blood, mucas and everything else that comes out each end. That is not a life and at times the thought that death may be less painful infiltrates the mind.

Cannabis IS medicine and has been used for 5,000 years at least which we know through well documented medical journals and pharmocopieas.

The Future of Cannabis is Clear
http://clear-uk.org/
access-sativex/
This is utterly outragous! I am sad that my own PCT is denying MS sufferers a medication that is effective and does work for their illness. If they are certain of the fact that Sativex is not effective they should prescribe it to those 7 people and let them, in a month or agreed lenth of time tell the PCT that they were right and that Sativex does not work - dispite being Authorised in Canada since 2005 and also recently been granted authorisation in Australia, Middle East, North Africa and 6 countries in Europe such as Italy, Spain, Belgium and Germany. Many of these European countries now have Herbal Medical Cannabis prescribable to patients suffereing from a wide range of illness like my own, Crohn's Disease where without Cannabis I spend my days couched over or on a a toilet throwing up or passing acid, blood, mucas and everything else that comes out each end. That is not a life and at times the thought that death may be less painful infiltrates the mind. Cannabis IS medicine and has been used for 5,000 years at least which we know through well documented medical journals and pharmocopieas. The Future of Cannabis is Clear http://clear-uk.org/ access-sativex/ CannabisCure.co.uk

11:39pm Fri 10 Jun 11

cannajan says...

People should not have to suffer when the remedy for their pain is available.
Sativex is expensive because the company have a monopoly on the only licensed cannabis medicine, they can charge what they like, its so easy when any competition is arrested as a criminal
People should not have to suffer when the remedy for their pain is available. Sativex is expensive because the company have a monopoly on the only licensed cannabis medicine, they can charge what they like, its so easy when any competition is arrested as a criminal cannajan

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