Medical cannabis for epilepsy in the UK

Medical cannabis is legal in the UK. This means that in some circumstances, specialist doctors may prescribe it to treat epilepsy. On this page, we talk about the different types of medical cannabis that are available. We also explain the guidance about who may be able to get it on the NHS.

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.

Are there any cannabis-based medicines for epilepsy?

At the moment there is one cannabis-based medicine that has been approved for treating epilepsy in the UK, called Epidyolex. It contains pure CBD.

Epidyolex is available on the NHS as a treatment option for some people with Dravet syndrome and Lennox-Gastaut syndrome. These are rare types of epilepsy that are difficult to treat.

Can I get a prescription for myself or my child?

Only some people with specific types of epilepsy are likely to be offered treatment with Epidyolex on the NHS.

The National Institute for Health and Care Excellence (NICE) makes recommendations about what medicines doctors should prescribe on the NHS. NICE recommends a combination of Epidyolex and clobazam (another epilepsy medicine) as an option for 2 groups of people:

  • People with Dravet syndrome whose convulsive seizures are not well controlled after trying 2 or more epilepsy medicines
  • People with Lennox-Gastaut syndrome whose drop seizures are not well controlled after trying 2 or more epilepsy medicines

The recommendations apply to adults and children aged 2 or over with these syndromes.

NICE says doctors should check the frequency of seizures every 6 months, and stop treatment with Epidyolex if it is not effective at reducing seizures.

The NICE recommendations apply to England, Northern Ireland and Wales. In Scotland, the Scottish Medicines Consortium has also recommended Epidyolex for people with Dravet and Lennox-Gastaut syndromes.

If you have been refused Epidyolex but feel you or your child meet the criteria to receive it, our campaigns team would like to hear from you. Contact them at campaigns@epilepsy.org.uk 

Can people with other types of epilepsy get a prescription for Epidyolex?

At the moment, Epidyolex is only recommended as a treatment on the NHS for people with Dravet syndrome and Lennox-Gastaut syndrome. This is because there is good evidence that it reduces seizures for people with these syndromes.

NICE is also considering whether to recommend Epidyolex to treat seizures in people with a condition called Tuberous Sclerosis. They expect to announce a decision on this in November 2022.

There is some evidence that Epidyolex may be effective for other types of epilepsy, but the evidence is not as good as for the syndromes mentioned above. Specialists may prescribe it for people with other types of epilepsy, but this would be on a case-by-case basis. And it is likely it would only be in exceptional circumstances, where other treatments have not worked.

NICE has called for more research into using CBD medicines to treat other types of severe, treatment-resistant epilepsies. This means some people might be able to access Epidyolex by taking part in clinical trials. Your specialist will be able to tell you if there are any clinical trials you could take part in.

What about medicines containing THC?

A small number of children with severe epilepsy in the UK have been treated with unlicensed cannabis oil containing CBD and THC. Some evidence suggests these medicines may be effective, but the research so far has been limited and of low quality.

NICE has not made any recommendations about prescribing medicines containing CBD and THC for epilepsy. This means that although specialists can legally prescribe them, they would only do so on a case-by-case basis. They would need to be satisfied that there’s enough evidence to show the medicine is safe and effective, and that there are no licensed medicines that would be suitable instead. They would also need to get permission from their hospital, and the NHS in their area would need to agree to pay for it.

NICE has called for more research into medicines containing CBD and THC. This means some people might be able to access these medicines by taking part in clinical trials. Your specialist will be able to tell you if there are any clinical trials you could take part in.

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 shops are not licensed as medicines. Companies selling these products are not allowed to make any claims about their ability to treat any condition. They do not need to be made to the same standard as medicines. This means there is no guarantee of their quality, and the concentration of CBD may vary from product to product and even between batches of the same product.

If you 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.

Do medical cannabis products cause side-effects?

Like all medicines, Epidyolex can cause side-effects. The most common ones, which may happen in more than 1 in 10 people, are:

  • Feeling drowsy or sleepy
  • Having less appetite for food
  • Diarrhoea
  • Fever
  • Feeling tired
  • Being sick

You can get more information about side-effects from the Epidyolex patient leaflet.

There is less evidence about the safety or side-effects of medicines containing CBD and THC, such as cannabis oil. Some neurologists have raised concern about the effect THC may have on the developing brains of children and young people. This is based on evidence that exposure to high levels of THC during recreational cannabis use can affect brain development and mental health, particularly in young people.

As CBD products sold in health food shops and online are not licensed as medicines, there is less information available about their possible side-effects. However, as they contain CBD, they may have similar side-effects to those listed for Epidyolex.

What is Epilepsy Action doing about medical cannabis for epilepsy?

Epilepsy Action is campaigning for research into products that contain THC as well as CBD and research into whether Epidyolex could also benefit people affected by other types of epilepsy. Epilepsy Action believes that this research should also ensure that people with severe and treatment-resistant epilepsies who could benefit can access these treatments as a matter of urgency. We want to remove the barriers that have been preventing people with epilepsy who could benefit from accessing cannabis-based medicines in the NHS.

Read Epilepsy Action’s campaigns page about epilepsy and cannabis-based medicines.

If you would like to see this information with references, please contact our Epilepsy Action Info_Requests_Helpline

 

Code: 
F156.08

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 no conflict of interest that would affect their suitability as a reviewer for this information.

This information has been produced under the terms of the PIF TICK. The PIF TICK is the UK-wide Quality Mark for Health Information.

  • Updated January 2022
    To be reviewed January 2025

Comments: read the 2 comments or add yours

Comments

Hi, my son was diagnosed with ring chromosome 20 at the age of 8. Age 9 he started to have absent seizures he is now 26 and has not had a day free from them. He now has 4 different types of seizures however his neurologist put him forward for the Epidyolex ( CBD oil). He has been on this for 4 weeks now, no signs as yet but he is on a very low dose of 0.9ml, finger's crossed it may help.

Submitted by Jo Bourne

Hi Jo Bourne, I was interested in the comment you’ve made regarding your sons condition and recent development in his treatment. My daughter is the same age as your son, she was also diagnosed at age 8 with Ring chromosome 22 mosaic. Her epilepsy specialist has dismissed our suggestions of using cbd based medications, though I feel that it is at least worth trying, due to her current meds making no difference to the frequency of her seizures. If you would be happy to, could I please contact you regarding your sons progress and any updates. I’d be most grateful to speak to a family in a similar situation.
My email is angela.powers@hotmail.co.uk

 

Submitted by Angela

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