Sativex cannabis spray clinical trial for CP? — Scope | Disability forum
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Sativex cannabis spray clinical trial for CP?

Anni
Anni Member Posts: 16 Connected
Hi. Does anyone know if there are any clinical trials for the synthesised cannabis spray Sativex for Cerebral palsy? I have chronic pain the doctors can't help with and am really struggling to cope. I wrote to Sativex several years ago asking why it is legal to treat 'pain and spasticity' in MS, but not CP. They just said there was no evidence it works, which means they hadn't done a trial.

Comments

  • Debbie_Alumni
    Debbie_Alumni Member Posts: 932 Pioneering
    Hello Anni,

    There is information about this on the NHS Choices website. You'll see that the current trials for Sativex are for children aged 8-18. http://www.nhs.uk/Conditions/Cerebral-palsy/Pages/clinical-trial.aspx?Condition=Cerebral+palsy~sativex.

    You can find out about other clinical trials using the same website and I hope that you find it useful. 

    Best wishes
    Debbie
  • Lizziew123
    Lizziew123 Member Posts: 1 Listener
    My 15yr old son has taken part in the Sativex drugs trial, through one of his Paediatricians at the QMC, nottm, we completed the trial, and stayed on the sativex during the compassionate phase, but then withdrew our son from the Sativex, as we felt the effectiveness wasn't enough, to continue with the side effects he had. 
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 932 Pioneering
    Hi Lizziew123,

    Thanks for sharing your son's experience of the Sativex trial. I would love to hear more about the trial, the positives (if any) and the negatives. 

  • Anni
    Anni Member Posts: 16 Connected
    Hi Lizzie123,

     I would be interested to know about the side effects too, if you're happy to talk about them, so I know what I might be up against if I ever managed to get on a trial.
  • Katie_G
    Katie_G Member Posts: 14
    Hi Anni,

    I work in a Research Governance Team. I review and approve clincial trials everyday. I can honestly say to give the clinical trial route ago i believe for anyone who suffers with any kind of pain in any part of their body no matter what your diagnosis maybe it would be a great place to star. You are closely monitored and the teams i work with really put the word CARE back in their J.Ds and alot of the time you hear wondeful things about medications or equipment being a success. Thumbs up for clinical trials. 

    My  boy has CP his 2 in a few weeks and we have had alot of help and advice and we have taken part in a trial which have new sleep systems to improve posture and spasms plus to make him feel hugged as im still having to rock him to sleep. We are waiting for some equipment to hopefully help with his spasms at night. 

    I wish u look in
  • Katie_G
    Katie_G Member Posts: 14
    I wish you luck in finding the right trial.

    Best wishes
    Katie x

    P.s. sorry was to eager on the last message and posted it early. 
  • Anni
    Anni Member Posts: 16 Connected
    Thanks, Katie G. I have a new specialist who has put me on his list of people who want in on a trial, so here's hoping there's one for adults soon.

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