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Medical cannabis for epilepsy in the UK

Medical cannabis has been made legal in the UK. This means that in some circumstances, specialist doctors may prescribe it to treat epilepsy. On this page, we answer some of the most frequently asked questions about medical cannabis for epilepsy.

What is medical cannabis?

"Medical cannabis" is a broad term for any sort of cannabis-based medicine used to relieve symptoms. These medicines are all based on a part, or parts of the cannabis plant.

The cannabis plant contains hundreds of natural chemicals. When looking at medical cannabis, the two most important are cannabidiol (CBD) and tetrahydrocannabinol (THC).

CBD does not have the mood-altering effects often associated with cannabis. There has been a lot of research into the potential of CBD as an epilepsy treatment.

THC is the part of the cannabis plant that makes people feel ‘high’. More research is needed to find out if products containing THC are safe or effective for treating epilepsy.

What types of medical cannabis are available to treat epilepsy?

At the moment, there are no forms of medical cannabis licensed to treat epilepsy in the UK. A cannabis-based medicine called Epidiolex, containing CBD, is currently going through the licensing process. In the meantime, although it is unlicensed, specialists may prescribe it in rare circumstances.

There have been a small number of cases of children with severe epilepsy being prescribed unlicensed cannabis oil containing CBD and THC. It’s not clear at the moment how frequently this will be prescribed by specialists, but it’s likely to only be in exceptional circumstances.

How can I get medical cannabis for my child?

To see if medical cannabis might be helpful for your child, speak to their epilepsy specialist.

The British Paediatric Neurology Association (BPNA) recommends that medical cannabis should be used as a ‘treatment of last resort’ for children who:

  • Are continuing to have seizures despite treatment with licensed epilepsy medicines at the dose that would usually be expected to control seizures
  • Are either not suitable for the ketogenic diet, or have tried the ketogenic diet and it didn’t work
  • Are not suitable for epilepsy surgery

If a child meets all these criteria, the BPNA recommends prescribing the CBD-based medicine Epidiolex. The BPNA does not recommend prescribing cannabis oil or any form of medical cannabis other than Epidiolex. However, these are only recommendations, and it will be up to your child’s specialist to decide whether to prescribe medical cannabis and in what form.

Can my GP prescribe medical cannabis?

GPs cannot prescribe medical cannabis. It can only be prescribed by specialists.

I’m an adult with epilepsy. Can I get a prescription for medical cannabis?

The new law does not put any age restrictions on who may be prescribed medical cannabis for epilepsy. But in reality, it’s likely it will only be prescribed to children with severe epilepsy, at least for now. At the moment, there’s no guidance for specialists about prescribing medical cannabis for adults. This is because so far there’s little evidence about how well it works as a treatment for adults with epilepsy.

Read Epilepsy Action’s news story on the law change, including Epilepsy Action’s view on access to cannabis-based treatments for adults. 

I’ve seen CBD products online and in my local health food shop. Can I use them to treat my epilepsy?

CBD products sold online and in health food shops are not licensed as medicines. Companies selling these products are not allowed to make any claims about their ability to treat any condition. It is extremely unlikely that they will be made to the same standard as medicines. And you cannot guarantee what their quality will be.

If you do choose to use CBD products for yourself or your child, it’s important to let your epilepsy specialist know. This is because the CBD product could affect the way your or your child’s existing epilepsy medicines work. You should not stop taking your epilepsy medicine unless your epilepsy specialist advises you to, as stopping could cause you to have more frequent or severe seizures.

What evidence is there that medical cannabis can help people with epilepsy?

There has been a lot of research into medical cannabis for epilepsy in recent years. Most studies have focused on CBD. And most have involved children with rare and serious epilepsy syndromes, who are already taking a number of epilepsy medicines.

What we know:

Studies suggest that CBD may be an effective treatment for children with some types of hard-to-treat epilepsy. To assess how effective an epilepsy treatment is, researchers often look at how many people have a 50% or greater reduction in seizures. A recent evidence review found that one in every 8 people taking CBD would have a 50% or greater reduction in seizures. A much smaller number (less than 1 in 100) would become seizure free.  

Patients have reported side-effects when taking CBD. Some of those reported were drowsiness, diarrhoea, reduced appetite and fatigue.  Side-effects happen in around 1 in 3 people taking CBD.

There’s some evidence that when CBD is taken alongside epilepsy medicines, the levels of the epilepsy medicines in the blood may be affected. With some medicines this can have potentially dangerous consequences. For example, people taking CBD with clobazam may have increased sedation, and people taking CBD with sodium valproate may have altered liver function.  

What we don’t know:

Most studies have looked at medical cannabis as an ‘add-on’ therapy for people who are already taking a number of epilepsy medicines. This means we don’t know if medical cannabis works when taken on its own.  

There haven’t been any studies comparing medical cannabis with other medicines already licensed for treating epilepsy. So we don’t know if medical cannabis is more or less effective than other epilepsy treatments. Neither do we know if it is more or less safe than other epilepsy treatments.  

There’s also not enough evidence yet to say if products containing both CBD and THC are safe or effective. Neither is there evidence to say if the THC component is of any additional benefit. We do know, however, that THC does have a risk of additional side-effects.  

As most studies have focused on children with specific types of hard-to-treat epilepsy, there’s not enough evidence to say if medical cannabis is useful for other people with epilepsy.  

Most studies have used highly-regulated, ‘pharmaceutical grade’ CBD under medical supervision. We don’t know if unregulated CBD products (for example those available in health food shops) are safe or effective. 

Where can I read more about medical cannabis and epilepsy?

Read Epilepsy Action’s latest news story about medical cannabis
Read Epilepsy Action’s position statements on medical cannabis
Read the Home Office announcement on medical cannabis

If you would like to see this information with references, visit the Advice and Information references section of our website or contact our Epilepsy Action freephone helpline on 0808 800 5050.

Code: 
F156.02
Event Date: 
Friday 3 August 2018 (All day)

Epilepsy Action would like to thank Professor Hannah Cock, professor of epilepsy and medical education and consultant neurologist at St George’s University Hospitals, for her contribution.

Professor Cock has declared an interest in the subject of cannabis-based treatments and epilepsy. Epilepsy Action does not believe this interest has influenced the content of this information or Professor Cock’s impartiality as an adviser. For further details please contact the Epilepsy Action Helpline.

This information has been produced under the terms of The Information Standard.

  • Updated November 2018
    To be reviewed November 2021

Comments: read the 2 comments or add yours

Comments

My Son Christopher is 37 years old and has Autism and Epilepsy. His epilepsy has been hard to treat as he has so many awful side effects to many standard epilepsy medications. He is taking 1500mg CBD oil 5 drops and Tegretol 400mg morning and evening and this has reduced his seizures but not enough for him as he has fallen quite badly on his head many times and we are concerned at the many head injuries he has had. I don't know how much more his body can take.

Submitted by Jennifer Tosh on

Hi Jennifer,

It sounds like you and Christopher’s are having a difficult time because of his epilepsy.

Falling on his head must be a worry. Have you and Christopher thought about him wearing some form of head protection? His hospital consultant can prescribe protective headgear on the NHS, if they feel it’s appropriate. You can also buy protective headgear privately. We have details of stockists on our website.

As Christopher is still having seizures, I’d like to check he is getting the right treatment and care for his epilepsy.

There has been a lot of news coverage about the use of CBD oil in the past few days. We are keeping people up to date with this on the news section of our website.

I wonder if it may help you to talk to others.  From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing. If you think this could help you and Christopher, you may find some of our services helpful, such as our local groups, our forum4e online community, facebook and twitter.

Finally, if it would help you to talk to someone on our helpline please feel free to contact us directly. Our Epilepsy Action Helpline freephone is 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by rich on

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