appropriate treatment and consistent medication
One of the 12 statements in the Epilepsy charter covering the rights and services that a person with epilepsy can expect.
The Epilepsy charter says: ‘You have a right to appropriate treatment options, and should have a consistent supply of medication.’ Your specialist should work out what is the best treatment for you, and you should have access to the drugs that they recommend.
The NHS Constitution (opens new window) says:
"You have the right to drugs and treatments that have been recommended by NICE* for use in the NHS, if your doctor says they are clinically appropriate for you."
This means that if the drug that is most suitable for your epilepsy is recommended by NICE, you should be able to receive it. This depends on:
- the drug being ‘clinically appropriate’ (that it is the right drug for your epilepsy, your seizures and for you)
- the drug has been through a health technology appraisal*.
The NICE guideline for epilepsy lists anti-epileptic drugs (AEDs) that are recommended for different types of epilepsy and seizures, which have been recommended through health technology appraisals. There may be other drugs that have not been through an appraisal (for example, newer drugs), which may be useful for you.
"AED treatment strategy should be individualised, taking into account ... any other medication being taken, any other medical conditions, your lifestyle and preferences."
When discussing a treatment plan with your specialist, they will identify the treatment best suited to your epilepsy and seizures (for example, some AEDs work better for certain types of seizures than others). However, they should also take into account your overall health (such as whether you take drugs for any other condition), and your lifestyle and preferences. For example, some AEDs might make you feel tired, so they might be best avoided if you are working or studying.
*recommended by a NICE technology appraisal – for more information, see documents and organisations used to develop the Epilepsy Charter.
Consistency of supply
Most AEDs have two names: a generic name (for example carbamazepine) and a brand name given by the manufacturer (for example Tegretol). Some AEDs have more than one generic version, each of which can be given its own name.
For some AEDs, different versions of the drug can vary slightly and this could affect seizure control. Once you and your doctors have found an AED which helps control your seizures, and which suits you, it is recommended that you take this version consistently with every prescription (called ‘consistency of supply’). If a prescription only has the generic name, a pharmacist can give any version of that drug. However, if the prescription has the brand name, the pharmacist has to give that brand of AED. You can ask your GP or neurologist to specify the version you need by writing it on your prescription.
Some drugs are made abroad and brought into the UK, or are made in the UK, exported and then brought back to the UK. These are called ‘parallel imports’. They are sometimes labelled in a different language or have different packaging from usual. If you are concerned about taking parallel imports, you can ask your doctor to write ‘no parallel imports’ on your prescription. Although pharmacists don’t have to follow this, many will try to ensure that you are happy about your medication. It can be useful to get your prescriptions from the same pharmacist each time, as they may keep patient records and be able to help with any queries.
Get the charter
Order the fold-out guide through our online shop. The guide shows your care pathway from a first seizure, through diagnosis, treatment and self-management. Or download the Epilepsy charter (PDF, 790kb).