Which Childhood Epilepsies Get Cannabidiol with Clobazam on the NHS?

Cannabidiol combined with clobazam has become an important treatment option for certain rare and severe childhood epilepsies. However, navigating the NHS rules on who can prescribe it, which conditions qualify, and how access is funded can https://vergemagazine.co.uk/can-you-get-medical-cannabis-on-the-nhs-a-guide-to-the-uk-system/ be confusing. This article breaks down key points, including:

• The 2018 rescheduling of cannabis-based medicinal products and what changed
• What epilepsy syndromes are eligible for cannabidiol plus clobazam treatment on the NHS
• Specialist prescribing rules and NHS funding realities
• The difference between legal prescribing and NHS availability, including the role of unlicensed cannabis-based medicines

For parents or carers of children with rare severe epilepsy syndromes, understanding this landscape matters because it affects access to new but tightly controlled medicines.

Background: Childhood Epilepsy, Cannabidiol & Clobazam

Childhood epilepsies are a group of neurological disorders characterised by recurrent seizures starting in childhood. Rare severe epilepsy syndromes such as Dravet syndrome and tuberous sclerosis complex (TSC) often cause medically intractable seizures and impact overall development.

Cannabidiol (CBD) is a non-psychoactive compound derived from the cannabis plant. When combined with clobazam, a well-established epilepsy drug, cannabidiol has shown evidence for reducing seizure frequency in some rare epilepsy syndromes—offering a new treatment avenue where previous medications failed.

But navigating NHS access for this combination involves several layers of regulations and funding criteria.

2018 Rescheduling: What Changed for Cannabis-Based Medicines?

In November 2018, the UK government reclassified cannabis-based medicinal products (CBMPs), including cannabidiol preparations, moving them into Schedule 2 of the Misuse of Drugs Regulations 2001. This change meant that cannabis medicines could be legally prescribed by doctors and dispensed in pharmacies, clearly distinguishing legal prescribing from previous restrictions.

Why does this matter? Prior to rescheduling, the legality of prescribing cannabis-based products was murky, often causing NHS clinicians and pharmacists to be wary of issuing or dispensing them. Post-2018, licensed products like Epidyolex® (a cannabis-derived cannabidiol) became available for specialist prescribing under NHS-approved indications.

This rescheduling:

• Provided a legal framework for prescribing cannabidiol combined with clobazam
• Allowed specialist neurologists to apply for funding and prescription under strict NHS criteria
• Did not automatically mean NHS-funded access was guaranteed for all children with epilepsy

For a clear explainer on the implications of this rescheduling, releaf.co.uk offers patient-focused guides.

Which Childhood Epilepsies Qualify for NHS Access to Cannabidiol and Clobazam?

On the NHS, cannabidiol combined with clobazam is primarily approved and funded for very specific rare severe epilepsy syndromes where evidence shows meaningful seizure reduction and patient benefit. These include:

1. Dravet Syndrome: A severe, treatment-resistant developmental epilepsy syndrome starting in infancy, characterised by prolonged and frequent seizures.
2. Tuberous Sclerosis Complex (TSC) with associated epilepsy: A genetic disorder causing tumours and cortical malformations that lead to drug-resistant seizures.

These two are the main conditions where the licensed cannabidiol product Epidyolex® has been recommended by NICE (the National Institute for Health and Care Excellence) for NHS use — but only when prescribed in combination with clobazam.

In practical terms, that means a child with one of these diagnoses may get the combination prescribed by a specialist neurologist, provided they meet other criteria (such as prior treatment failures, age limits, and clinical response monitoring).

What About Other Childhood Epilepsies?

For other forms of childhood epilepsy, especially those not explicitly covered in NICE guidance, NHS funding for cannabidiol with clobazam is generally not available. This does not make it illegal to prescribe; legal prescribing is possible but funding decisions are separate.

Families seeking treatment outside these indications often find themselves in a challenging position: cannabis medicines can be prescribed off-label by specialists, but the cost usually falls outside NHS coverage, potentially requiring self-funding or access via private clinics.

For those exploring private care or wishing to compare cannabis-qualified clinics, medicalcannabis.co.uk offers a searchable directory and comparison tool.

Specialist Prescribing Rules on the NHS

Both NICE guidance and the rescheduling rules emphasise that cannabidiol with clobazam for childhood epilepsy should be prescribed only by specialist neurologists with expertise in rare epilepsies.

This is to ensure thorough assessment, careful dosing, monitoring of side effects, and coordination with other epilepsy treatments—especially given the potential interactions between cannabidiol and clobazam.

• Prescriptions are usually initiated and overseen by hospital clinics rather than GPs or general paediatricians
• Regular review is required to measure efficacy and adjust treatment
• Continuation on NHS funding depends on documented clinical benefit

As a result, access pathways often involve referral to epilepsy specialists at NHS tertiary centres specialising in rare severe epilepsies.

Legal Prescribing vs NHS Funding: What Patients Need to Know

It’s important to understand the difference between legal prescribing and NHS funding:

Aspect Legal Prescribing NHS Funding Permissions Doctors can prescribe cannabidiol-containing medicines if licensed or unlicensed, in line with regulations. NHS only funds medications when NICE or relevant health authorities recommend them for specific indications. Cost Prescriptions can be dispensed via pharmacies; patient or family may need to cover costs if NHS funding unavailable. NHS covers medication costs fully or partially if approved. Access Available through specialist prescription, including private specialists. Often limited to defined patient groups meeting strict clinical criteria.

In other words: a clinician can legally prescribe cannabidiol and clobazam for children with other epilepsy types, but unless NHS funding is approved, patients or families will likely need to pay privately.

Unlicensed Cannabis-Based Medicines and NHS Caution

While Epidyolex® is a licensed cannabis-based cannabidiol medication, there are many unlicensed cannabis-based products (sometimes called “CBD oils” or “cannabis extracts”) available in private markets.

The NHS remains cautious about these unlicensed medicines because:

• They lack standardised dosing and consistent quality control
• The clinical evidence for their efficacy and safety in childhood epilepsy is limited
• NICE and NHS England restrict prescribing unlicensed cannabis products outside clinical trials or special circumstances

Guidance encourages clinicians to stick to licensed cannabidiol products combined with clobazam for treatment of the approved childhood epilepsies and to be wary of unlicensed alternatives due to insufficient rigorous data.

Price Example

No specific prices were stated in the publicly available NHS or regulatory sources on cannabidiol with clobazam for childhood epilepsy at the time of writing. If future sources mention exact pricing, those will be quoted and attributed directly.

However, families considering private treatment often face significant costs for cannabis-based medicines, especially unlicensed ones, making thorough information and specialist advice essential before pursuing this route.

Summary: What Parents Should Know

• Only certain rare childhood epilepsies—mainly Dravet syndrome and TSC—usually qualify for cannabidiol plus clobazam on the NHS. These are conditions with well-documented clinical benefit proven by studies and NICE approval.
• The 2018 rescheduling officially allowed legal prescribing of cannabis medicines but did not guarantee NHS funding for all epilepsy types.
• Specialist neurologists prescribe and monitor cannabidiol with clobazam, ensuring clinical appropriateness and safety.
• NHS funding is separate from the legality of prescribing—in many cases, treatment outside approved indications may require private funding.
• The NHS remains cautious about unlicensed cannabis products due to variable quality and limited evidence.

Families interested in cannabidiol treatment with clobazam should consult their child’s specialised neurologist. For more information on cannabis medicinal clinics and treatment options, medicalcannabis.co.uk offers a comparison platform, and releaf.co.uk provides patient-friendly explanations of the legal and clinical landscape.