This information is about using the National Health Service in the UK. If you are looking for information about using the health service in another country, please contact your local epilepsy organisation.
From feedback to our service, we have found that some people with epilepsy have found it useful to have a list of questions to ask their doctor. For some people this might be their family doctor or epilepsy specialist. For others, it might be an epilepsy specialist nurse.
In England, Scotland and Northern Ireland, the National Institute for Health and Care Excellence (NICE) Guideline makes recommendations about diagnosing and treating people with epilepsy. NICE recommends you should have a meeting with a health professional, a doctor or nurse, at least once a year. This applies whether or not you are experiencing any particular problems. It is an opportunity to make sure that you are getting the best treatment for your epilepsy. The SIGN Guidelines make the same recommendations for people in Scotland.
Preparing for your appointment
- Take someone with you, if you can. They can support you and explain exactly what happens when you have a seizure
- Keep a seizure diary
- Organise your thoughts before you go, for example by making brief notes or a list of questions
- Try to make sure your questions are answered. If not, ask the question in a different way. If there’s not enough time to cover all your questions, ask for another appointment
Some questions for your doctor
- Why do you think I have developed epilepsy now?
- Has my epilepsy got a particular name?
- What is the outlook for my epilepsy?
- How does epilepsy medicine work?
- When should I take it?
- Must I take it exactly as stated?
- What happens if I miss a dose, am sick, or have diarrhea?
- What are the possible side-effects of my medicine?
- Which side-effects are important to see you about?
- What will happen if my medicine doesn’t work?
- Can you explain how the driving regulations will affect me?
You might want to discuss an epilepsy care plan with your doctor. This is a booklet that can be filled in and updated by you and any professionals you see about your epilepsy.
It is to make a note of things such as:
- What happens to you during a seizure
- How long you take to recover from a seizure
- How long your seizures normally last
- What to do if your seizures last longer than usual
- Anything that makes your seizures more likely
- Which epilepsy medicine you take
- The details of your doctors
Contact Epilepsy Action for an epilepsy care plan booklet
Epilepsy Action has launched the Seize Control campaign toolkit to help you to work more closely with your GP, epilepsy specialist, and epilepsy specialist nurse. Asking them a few specific questions could help you, and them, make the right decisions about your epilepsy treatment.
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Freephone Helpline on 0808 800 5050.
This information has been produced under the terms of The Information Standard.
- Updated January 2015To be reviewed January 2018