"Medication for parkinsons"

About: NHS Borders

(as the patient),

I wonder if someone could answer my query regarding prescribing guidelines. I have had Parkinson's for 12 years now and the current meds available are not having much effect now.

I heard from someone with MS that they have good control of their symptoms with a drug called sativex which is prescribed. I believe only for MS despite the fact that Parkinson's is also a movement disorder. I asked my gp about this and was told they would need permission to prescribe it to me.

Can you tell me who would be responsible for authorising this? It seems to me to be a bit unethical not to treat someone, who is suffering, with a drug that could give relieve symptoms. Is it perhaps the cost of this medication or the fact that its been given the unfortunate name by some people as medical marijuana? I would appreciate your comments.

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Response from Stephen Bermingham, NHS Borders

Dear bellingham72

I am very sorry to hear that the medication for the treatment of your Parkinson’s disease is not effectively controlling your symptoms. I have liaised with medical, nursing and pharmacy staff in relation to the use of Sativex for the treatment of Parkinson’s.

Sativex is licensed for the treatment of spasticity in MS that is resistant to conventional therapies. However, Parkinson’s disease causes rigidity which is very different from spasticity. Sativex is not licensed nor approved by the Scottish Medicines Consortium and for these reasons it is not possible for it to be prescribed for the treatment of Parkinson’s.

If your current medication is not working you should review this with your GP and look at other medications or treatments that may be more effective. I am sorry if you find this response disappointing but please don’t hesitate to call me on 01896 826034 if you would like to discuss this further.

Diane Keddie

Associate Director of Nursing for Acute services

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Update posted by bellingham72 (the patient)

Thank you for your response to my story, whilst I appreciate you looking into this matter I have had PD for almost 12 years now and in that time I have gained a great deal of knowledge on the subject,(some people take the opposite option).

Can I just correct something, PD isn't just about rigidity, it also causes spasticity, slowness of movement, tremor, dyskinesia to name but a few.

It also causes a lot of non motor symptoms which aren't widely known,therefore a number of these symptoms are also present in MS. I've had my medication reviewed extensively without any improvement in that time.

I've also consulted 5 neurologist and I,m probably down to my last treatment option which is DBS (deep brain surgery),this is a drastic last option and I find it extremely unethical that I have to go through that particular option when I know for a fact that sativex could help but from your reply it seems I wont get the chance to find out.

I plan on fighting this as far as I can take it, it is also my personal opinion that no person has the right to deny someone who is suffering a medication that could help. I also know that some people have also got relief from smoking cannabis but I wouldn't go down that road because it is illegal, sativex is not.

Updates, changes and questions related to this story