Forum

sativex

Hiya anyone and everyone, Has anyone actually been prescribed Sativex? I live in the North West of England and asked the medics ie/ neurologists,rehab specialists,MS nurses,GP All claim my PCT’s not funding this treatment ! What’s my next step ? Showers

HI Showers, It took me seven years of nagging and getting as mutch informatoin as i could get letters from people saying they want to prescribe it but there is no funding by the PCT, get in touch with your MP, local paper,or even local radio,and any one else you can think . For me it works so i am gratful for that ,but it was hard.Even if you could talk them into trying it,it would be a start. Hope you get it soon. Tale Care , Chris.

Sorry Showers, It is me again just remember that this has side effects just like all medicatoin, you must way up the pros and cons. It helps me with spasms and a bit of pain i think. Sideffects very dry mouth,and tiredness,for me,but i think i can live with it. Chris

Hiya chriskerr, thanx for your post,I’m not surprised just disappointed at the callous response of the PCT’s who hold the purse strings ! Struggling with the condition is a battle in itself nevermind taking on the so called ‘experts’ and their total lack of guts to demand that their clients/patients get the opportunity to try any treatments available. Regards Showers p.s I’ll keep you posted

My GP prescribes Sativex for me - has done since last June 10 when it was first licensed for ms use. The cost is minimal compared to the cost of DMD’s. So for people with ppms/spms Sativex can be the answer to help with muscle pain/spasms. l do hope you get some further help soon. Do you have a MS Nurse who would help with your appeal.?

I pay over £400 for my prescription.

Hi booktig,

Sorry you have had to pay for it.

Im lucky my PCT fund it for me.Have a very good Nuro and he was puching them hard.

Why cant the MS society get more vocal about this postcode lottery.

Seen my MS nurse today and i was the first person she had seen that was given the prisciption for it.

Think you payed a little over the odds for it,there is people on this site that pay for it to, and they might point you in the right dirrection,ie the cheapest.

No wonder we get frustrated.

Take care.

Chris.

Scratch cards…If a PCT funds one individual in the North West it sets a precedent, and they have to fund all of us. My PCT is using the results from a flawed trial as the reason why I’m left in constant pain, smoking the ‘Sativex Substitute’ and drinking way more than the ‘safe unit level’ in wine every night to get some sleep.Sounds like the dream job,but it is no social event and I hate it.

My nocturnal activities(well, not all of them) are documented on all sets of my medical notes,but the doctors hands are tied. Merseyside Police aren’t helping at the moment with their recent success against some of the local horticultorists, and what are the Dutch playing at?

Wb

Just had some good reports on sativex from usa. It’s far more restricted there than here. So much for the land of the free. I’m thinking of requesting sativex from my GP with support from my MS nurse. Baclofen not working as well as it used to, especially at night. I will fight fpr this. I will see my MP and the shadow health minister, along with local media. I can’t stand postcode lotteries. I will keep all posted re result.

Still no sativex. Will continue to get a prescription. Baclofen not working and spasms leave my calf muscles very sore. Had a bad spasm episode, happens when I’m getting off the bed. Very sore. Now is the time for m.p. To be involved. Will keep you posted.