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my quest to get Sativex on the NHS

Hi All

I thought that some of you on here would be interested in my story about my quest to get Sativex and the most amazing day that I had last week in hospital.

I have been trying to get Sativex on the NHS for some time now as I wanted to see if it could help with nerve pain and spasm in PPMS. Last year I decided to get a private script and buy it from E Med and found that it really worked for me. The cost is prohibitive so I continued to look to the NHS for help and finally found a London consultant who was able to prescribe it. My GP wrote a referral over a year ago and I saw the consultant who decided that before he would consider giving me Sativex he would need to put me through all the MS diagnostic tests that I had previously with my own consultant in 2006. Anyway it was confirmed that the diagnosis was correct and last week I finally got to see him again. To my delight he wrote a prescription for Sativex out in front of me and also said that he wanted me to try LDN as well which isn’t available on the NHS but he will send me a private script for. He said that I could pick up the Sativex at the hospital pharmacy that day. I went to the pharmacy to be told that they didn’t keep it in stock and to cut a long story short I had to see the hospital MS nurse who told me that I would need a physio referral from my GP to prove that I was in need of Sativex to justify the prescription. I was amazed that a nurse could over rule the decision of a consultant.!!! My local physio service has a 10 week wait time but I’m hoping to jump in when a cancellation is made. I had the prescription in my hands for a brief moment and now I 'm back to square on with my GP again. ABSOLUTELY AMAZING!!! I still can’t believe that it happened like that!!!

When the hospital told you they didn’t have the Sativex, could you not have taken the prescription to another pharmacy. Surely once you’ve got the prescription it’s yours. Presumably they didn’t give it back.

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The prescription could only be filled at the hospital pharmacy and no I didn’t get it back. It was like a bad dream really, I’ve fought so hard to get Sativex and it was just within my grasp…or so I thought? I’m still confused even now.

Mary

Mary

Keep us informed I have PPMS , none of the drugs work except for LDN which I presently get from the NHS , but was maybe going to go down the Sativax route. ironic that the neurologoist mentioned LDN , as most of them dont support it?

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Hi Trish

I couldn’t believe my ears when he said I could have both Sativex and LDN so I’m hoping that the private script for the LDN will turn up soon at least. I will still battle on for the Sativex and will be pestering the physio dept next week for that appointment. Trouble is if you don’t keep on making a nuisance of yourself they do nothing. I’m fed up with being ignored.

Mary

I think I would go back to the consultant, don’t mean make a lengthy appointment just go to where you see him, and walk in, say sorry but the pharmacy and ms nurse overruled him, is this right, sorry to burst in but it took months to get to see you, bla bla bla.

That’s just it , I wish that I’d gone back up to the department now and made a fuss. When the pharmacy queried it I told him to ring and speak to the consultant which I assumed that he did but I was sent to see the MS nurse who told me in no uncertain terms that there was no way that I would be taking Sativex home with me that day as he had the last say so and it had to be justified by him as it’s a controlled drug. I’m feeling more and more annoyed now. Trouble is the hospital is in central London and I’m near Brighton so it’s not just like popping back in to see him. Appointments are made at least 4 months in advance and as I’ve said this has taken me over a year from start till now to get this far. I’m banking on the physio now to fast track me back there.

Mary

Take it to the PALS branch at the hospital. They should be able to sort out between the Conslutant and the MS Nurse and get you a quick decision.

Don’t delay, mail PALS today!

Geoff

I wish you well on your quest,but and it is a big BUT…If they let you have it, everybody will want it and a prescedent will have been set

Wb

So sorry you are having so much trouble getting Sativex Marya, I wonder if you’ve thought of asking the MS Society to intervene, You just need to get in touch with the campaigns team. Anyway perhaps it won’t come to that, good luck with it all,

Wendy x

Hi Mary I feel for you SO much! Yes, I should think that it must feel like one of those horrible nightmares, to have it in your hand only to have it taken away! It might be worth phoning the consultant’s secretary and saying that you REALLY need to speak to him, sometimes they will actually get back to you. Hope this gets sort soon. Teddie

Crazy as it may seem, the lesson is, I will take a photo of the prescription before I hand it to the pharmacist. So I have proof, still can’t belive nurse has undermined the consultant it makes him look stupid. If you know consultants name, find him on google then send msg he might get and not be happy, never know.

In my former life I was a Consultants Secretary and if I received a phone call from a patient with such a query I would request their notes and give them to the Consultant. They would then either write a reply or have me ring the patient up.

So like others have said as well I would get on the phone as this is really unacceptable.

Thanks for all your comments. I’ve decided to get onto the consultant’s sesretary tomorrow morning to make sure that he is aware that this has happened to me when trying to get his prescription filled. I’ll update on here when I’ve done it and got an answer.

Mary

Hope you get it I thought once the script was made they had to honour it but good luck getting it. Don