Our response to NICE’s draft medicinal cannabis guidance
In their draft guidance, NICE refused to recommend cannabis for pain and spasticity in MS, and wouldn’t recommend a medicine called Sativex for wider use on the NHS.
Talking to people with MS and health professionals
Over 300 of you responded to our call for stories. This is the largest response we’ve ever received on any NICE consultation.
We also held focus groups with people living with MS and spoke with consultant neurologists, neuro-rehab specialists and a neuro-specialist pharmacist.
What we said in our response
We told NICE we disagree with their recommendation not to approve the routine use of Sativex for spasticity on the NHS.
Sativex has been a game changer. I don’t get any spasticity now. It’s been unbelievable. If someone would have said that it would have helped me that quickly, I would not have believed them – David, who has secondary progressive MS
We also said their guidance doesn't account for the cost managing symptoms like pain and spasticity has on carers. And it does nothing to remove the inequality between patients living in Wales (who can routinely access Sativex) and the rest of the UK.
As I live on the Wirral it seems totally unfair that the consultant working from the Countess of Chester Hospital tells me he can prescribe cannabis for his patients coming from North Wales but not England - Elaine, who is living with MS
What happens next
We’re expecting NICE to publish its final guideline in November 2019 and we hope to see all our recommendations included.
We’re also calling on the government to:
- Set up a managed access scheme. This is where people with MS are given free cannabis-based medicinal products in exchange for taking part in research trials
- Work with drug companies to lower the price of Sativex so that it can be available on the NHS.
Share your story
Do you or someone you care for have experience trying to access cannabis-based medicines for MS? Share your story with us at firstname.lastname@example.org.