Paediatric Epilepsy Patient Guide

Introduction 

The London Resilience Clinic is one of the only UK clinics treating children with epilepsy using medical cannabis. This is a highly effective treatment and can greatly improve the quality of life of children and their families. 

Medically complex children, CQC regulator scrutiny and UK medical cannabis medications stock issues all combined place a significant clinical and administrative burden on the clinic. If the administrative burden becomes unmanageable, the clinic will not be able to continue offering the paediatric epilepsy service.

The purpose of this document is to outline how the paediatric epilepsy service operates, set out your service expectations, and ensure the service is safe and able to help as many children as possible. 

Your most important responsibilities are:

• You MUST Book your child’s follow up -  You must book your child’s follow up appointments as advised by the clinician   
• You MUST NOT change your child’s medication or dosing - unless discussed and agreed with your child’s specialist beforehand. There is significant risk to your child’s health if changes without medical supervision are made to the medical cannabis your child is receiving. This includes adding other ‘over the counter’ cannabinoids.  

We may decide to stop prescribing medical cannabis to safeguard your child from harm if we feel it is in your child’s best interests for example, if you are not following the above responsibilities.

Non Prescribed Cannabinoid Medications

You must not give your child any cannabinoid products that are not prescribed or agreed by your clinician. This is because we need to be able to effectively calculate the total cannabinoid intake, especially of THC and CBD mg per kg of your child for effective treatment protocols. 

Medication Stock Issues

We have no control over availability of medical cannabis products in the UK (except Althea, please see below). The UK medical cannabis industry regularly experiences issues with medications going out of stock.

Stock supply issues are primarily due to UK import regulations that prevent manufacturers importing medications in bulk quantities. Often these stock issues occur with limited or no warning. 

Once your child is stable on a medical cannabis product, if that product becomes unavailable your child will need to be prescribed a different product. This can result in a deterioration in the control of your child’s seizures if not carried out slowly.  Our processes below have been developed to mitigate this risk as much as possible by allowing time for transition from one medical cannabis product to another and avoid a significant administrative burden on the clinic

Booking Follow Ups

You MUST book your child’s follow up appointments as advised by the clinician. 

Immediately after each appointment a patient report will automatically be emailed to the email address registered with us. This report has the following information:

• Date of next appointment to book 
• Details of product prescribed and dosing

We strongly advise that you book your next follow up appointment when you receive this report.

This is vital to ensure your child  does not run out of medication and experience adverse outcomes. Medication fulfillment delays of 7-14 days and longer are not uncommon in the UK due to a variety of factors including post delays (all private controlled medication prescriptions are paper prescriptions which must be posted to the pharmacy).

We have limited appointment availability and cannot offer last minute appointments. As such it is vital you book your child’s appointment in advance and as close as possible to the follow up date advised by your child’s specialist. This follow up appointment date has been calculated to be within 3 weeks of your child running out of medication, allowing us time to manage any medication availability issues if they arise.

If you consistently do not book follow up appointments in a timely manner, we will discharge your child back to their NHS care team.

Repeat Prescriptions 

Once your child is stable on medical cannabis, they will be seen by their specialist every three months. At these appointments, the specialist will write repeat prescriptions for them, so that your child will have enough medication to last until their next appointment.

We do not charge a fee for these repeat prescriptions written within the consultation, however we charge a fee of £29 for each repeat prescription requested outside of a consultation. Once repeat prescriptions are being prescribed for your child, please communicate with your pharmacy regarding all prescription matters.

Medication Expiry Dates

Due to UK medical cannabis stock issues, sometimes products have short expiry dates. In order to guarantee your child’s medication supply for 3 months, sometimes your pharmacy will order the full 3 months of medication required for your child straight away.

Because of this, your child’s medication may approach its expiry date toward the end of the three months. Your pharmacy will normally inform you of this.

Medical cannabis products approaching their expiry dates are still safe to use.

When a child is stable on a specific medical cannabis medication, a product with a short expiry date is safer than suddenly switching to a new medication.

Althea Products

We have reached an agreement with Althea to guarantee supply of medication for our paediatric epilepsy clinic. We will notify Althea what our projected demand will be for each 3 month period, and they will import that stock specifically for the clinic every 3 months. As such, Althea is the only product we have any influence over regarding stock availability in the UK.

Althea products may not be the best product for your child. You can discuss this with the clinician during your child’s appointment. 

Pharmacies

The pharmacy will normally receive your prescription within 5 days of your appointment. They will then contact you to arrange payment and delivery. You will be told in your appointment which pharmacy your prescription will be sent to. Please liaise with this pharmacy regarding costs and delivery of the medication for your child

Approximate Medication Costs

These costs are an approximate guide only. Medication costs are charged by the pharmacy not by the clinic and depend on many factors including the product(s) you choose with your child’s specialist and the dose needed that works best for your child.

Average Cost of Medication per Month if already on Epidiolex 

Average Cost of Medication per Month if not on Epidiolex 

	5 yr old (14kg)	10 yr old (30kg)	15 yr old (55kg)
Althea Products	£118	£252	£463
Bedrocan Products	£715	£1532	£2809

Some patients have an existing NHS prescription for Epidiolex for CBD and so only require a prescription for THC containing products to compliment the CBD.

The cost of Althea products are similar to the prices of other products available in the UK (eg. Curaleaf, Lumir, etc.)  used as a guide.

Bedrocan products are well known but very expensive and have supply issues. 

Other Fees

Additional MDT Time - If there is a request or additional input required which the specialist cannot complete during your child’s appointment, a clinical multidisciplinary team review may be required. This is billed at the hourly rate of £349 pro-rata.

Alternative Pharmacies - We use Leyes Lane and Target Pharmacy for all our controlled drug prescriptions. If you want us to send your child’s prescriptions to an alternative pharmacy, we charge an additional £10 shipping fee.