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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 very rare circumstances, where CBD alone hasn't helped. This is because there is no clear evidence that THC is of additional benefit. And there is concern about its effect on brain development and mental health, particularly in children and young adults.

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:

  • Have tried all the available licensed medicines for their type of epilepsy without success
  • 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.

The BPNA says only consultant paediatric neurologists should prescribe medical cannabis.

Even if a paediatric neurologist recommends medical cannabis for your child, the decision must be approved by the hospital. The NHS in your local area will also need to agree to pay for it.

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

It’s likely that medical cannabis will only be considered as a treatment option for a very small number of adults. Specialists are likely to only recommend medical cannabis for adults with very severe epilepsy that started in childhood. And only when all other treatments have failed.

The Association of British Neurologists (ABN) has published guidelines on the use of cannabis-based products in neurology. It says specialists should only prescribe medical cannabis for adults diagnosed with Dravet syndrome or Lennox-Gastaut syndrome. These are both rare and severe forms of epilepsy.

If an epilepsy specialist recommends medical cannabis for you, the decision must be approved by the hospital. The NHS in your local area will also need to agree to pay for it.

Can my GP prescribe medical cannabis?

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

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 150) 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: 
F156.04
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 8 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

Hi there I've just found out I've been suffering with nocturnal grand mal seizures for years. I regularly smoke cannabis and I suspect this hid the symptoms somewhat. But recently it has been getting worse (a fib 3 times always when waking up) but the crazy thing is I've had no memory of any of it, only ever the symptoms when I wake up.

May I say I found your article very helpful, insightful, and I like the way you present the facts even if it means a definite answer can't be given. I hope more research can be done on CBD in the future so people can get a more definitive answer from the medical community, but as someone who recreationally uses and enjoys cannabis I believe it might be a waste of time looking into thc as a potential cure. For somebody who uses cannabis in such a manor it's likely to do more harm than good in the long term.

Submitted by Keiren Biggs on

Hi, I have suffered with epilepsy since the age of 7 , my seizures have been controlled with drugs up until I had a very serious car accident in 1993 since then I have had between 5 and 12 seizures every night , they only happen when I’m asleep and I have tried every drug on the market I am looking at a surgical route but am very depressed as nothing helps do you think cbd oil could help. Looking for any help please I’m at the end of my rope and am getting tired of holding on. Thank you
Mike hill

Submitted by Michael Hill on

Hi Mike

It sounds like you’re having a really tough time.

At the moment CBD oil is only being used in really specific circumstances, mostly for people with Lennox Gastaut or Dravet syndrome. And it has mostly been used in children.

But given how many epilepsy medicines you’ve tried and how many seizures you’re having, it would certainly be worth talking with your neurologist about whether they think CBD oil may be able to help.

Some people do find that surgery, either VNS or brain surgery can make a considerable difference to their epilepsy. So it’s good you’re having those conversations.

There is also the ketogenic diet, though the dietary support is mostly only available for children. Again it would be worth a conversation with your neurologist.

Here is the range of support we offer in case there is anything there that might make life a little more bearable for you.

And if you’re really struggling, do remember that the Samaritans are available to talk to 24 hours a day. Their helpline number is116 123.

I very much hope things improve for you at some point soon.

Regards

Cherry  

Epilepsy Action Helpline Team

Submitted by rich on

Hi my daughter is now 34 years of age having suffered a major stroke at birth resulting from birth hypoxia she has a right hemiparesis profound short term memory problems and complex intractable epilepsy.
She is not suitable for surgery has a VNS but still continues to have over 100 seizures some days and drop seizures cluster seizures and tonic clonic some weeks are completely written off by continuous seizures making it impossible to join in any of her usual activities. She has daily fatigue from these seizures and the nocturnal seizures that are evident and have been tracked by lengthy hospital admissions recording/filming 24 hour sleep and during daily activities.
Having trialled many drugs with no improvement and being at high risk of SUDEP she has Buccal Midazolam always to hand as a rescue medication.
The side effects of the AED's are not nice and her quality of life is very affected by the ongoing epileptic activity and the mediation.
My only hope for my daughter to have an extended and good quality of life could be the prescribing of Medical Cannabis. It is my hope that she could be considered a suitable candidate for this drug as it could to be her main hope of relief.
She has 24/7 care. Regards Vicki

Submitted by vicki on

Will be traveling to London with my 16 year old son who has Dravet Syndrome. We are from the US and he has been prescribed Epidiolex here. Any known issues or recommendations for traveling with Epidiolex in the UK?

Greatly appreciate your time in helping keep my son safe during his travels!
Jen McFadden

Submitted by Jennifer McFadden on

Dear Jen

Thank you for your email.

We are not aware of the regulations for bringing Epidiolex into the UK. It would be best to check with the British Embassy in the US, or see if the Epilepsy Foundation of America have information on this. I wonder if the travel company you are using may be able to find out for you.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane - Epileps... on

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