Earlier this year, 1,600 people with Parkinson's and 29 health and care professionals shared their views about and experiences of using cannabis-derived products.
Here's what they said.
When it comes to evidence of the benefits of cannabis-based products for people with Parkinson's, the jury is definitely out.
Although lab studies have shown some promising effects, there isn’t enough evidence yet to show that cannabis-based treatments are beneficial for people with Parkinson’s. And there are very real risks.
There's a lot more research needed, both in the lab and in clinical trials.
In fact, we're funding a clinical trial through our Virtual Biotech right now. In a world first clinical trial, Professor Sagnik Bhattacharyya and Dr Latha Velayudhan at Kings College London (KCL) will be testing whether cannabidiol (CBD) can treat Parkinson’s psychosis symptoms.
Over the next 3.5 years, researchers will test whether Cannabidiol (CBD) helps people’s psychosis symptoms. During this trial they’re aiming to find out how safe it is, whether there are any side effects, the best way to administer it and the ideal dosage.
The legal stuff
Cannabis is a class-B controlled drug in the UK. Possessing, producing and supplying it are all against the law. ‘Supply’ includes sharing the drug with someone or giving it (even for free) to friends or relatives.
Cannabis-based products are not available on prescription from the NHS for people living with Parkinson’s. And using cannabis to help with your Parkinson’s symptoms is not a valid defence in the eyes of the law.
In November 2018 the law changed to allow people to access medical cannabis legally. However, this is almost exclusively by private prescription. If you would like to find out more about accessing medical cannabis, visit Project Twenty21.
CBD oil is available to buy legally as a food supplement. But it can't be advertised as beneficial for medicinal purposes as there is not enough evidence currently.
Our survey results
Between January and March 2019, we asked people with Parkinson's and health professionals to tell us about their experiences with and opinions on using cannabis-based products.
We've now analysed their answers and produced a short report sharing our key findings.
Our policy panel will discuss these findings at their November 2019 meeting and agree what we think as an organisation and our next steps.
How many people with Parkinson's use cannabis?
- 59% hadn't used cannabis-derived products before, but would consider using them to control their symptoms.
- 26% had used cannabis-derived products (16% are currently using them for their Parkinson's and 10% have used them in the past).
- 16% hadn't used cannabis-derived products and aren't interested in using them in the future.
- Overwhelmingly, people with Parkinson's would continue to use, or start using, cannabis-derived products if robust evidence became available that they're safe and effective in treating Parkinson's symptoms.
I'm on maximum levodopa, I'm too old for surgery and the pain can be severe and unmanageable now.
What products are people using?
The most common cannabis-derived product people with Parkinson's used was CBD oil. People interested in using a cannabis-derived product in the future said this is what they'd consider using.
If the side effects are less than traditional Parkinson's drugs, then I would want to try cannabis.
Where do people get cannabis from?
People who currently use cannabis-derived products, and those who had previously used them, buy them from high street shops.
However, 87% of people who hadn't used cannabis-derived products said they would want a doctor or pharmacist to prescribe them.
What are the side effects?
Respondents who had used cannabis-derived products in the past said they didn't experience side effects, and that the products didn't interact with their Parkinson's medication. This was backed up by professionals.
However, people who hadn't used them said they were worried about potential side effects and interactions with Parkinson's medication.
It works better for me than conventional drugs.
Most people currently using cannabis-derived products, or those who had used them in the past, didn't get advice from professionals beforehand. Those who did are split on whether the advice was helpful.
Professionals reported that people with Parkinson's regularly ask them about using cannabis-derived products. 70% of professional respondents said they offer advice.
86% of professionals didn't feel confident about prescribing cannabis-based medicinal products for their patients. Many weren't sure if the prescribing guidance is fit for purpose (it doesn't specifically mention Parkinson's).
I might consider it if my consultant recommended it and there had been sufficient research into its effectiveness and possible side effects.
Be part of the breakthroughs
Support our world first clinical trial into how CBD – a compound found in cannabis – could treat Parkinson’s psychosis. This is pioneering research. But the results won’t just be seen in the lab. They’ll be seen in real, life-changing breakthroughs.