This information is relevant for people who live in England, Northern Ireland and Wales. If you are looking for information about medical care in another country, please contact your local epilepsy organisation.
NICE clinical guideline 137, issued January 2012
The National Institute for Health and Care Excellence (NICE) guideline
The National Institute for Health and Care Excellence (NICE) is the independent organisation responsible for providing national guidelines on treatment and care for people using the NHS in England, Northern Ireland and Wales. The guidelines are to help healthcare professionals, patients and their carers to make decisions about treatment and healthcare. They aim to make you aware of the services available, and to have the confidence to ask for the treatment and information you need.
The information that follows is a summary of the NICE guideline on epilepsy. It applies to children, young people and adults, but not to newborn babies. This is because epilepsy in newborn babies is very different to epilepsy in older children.
What the guideline says about epilepsy
If you have had a possible seizure, you should have an appointment with a specialist medical practitioner with training and expertise in epilepsy. This should be within two weeks. This specialist should make a diagnosis, using tests such as an EEG (electroencephalogram) and MRI (magnetic resonance imaging) where appropriate. You should be able to have the tests within four weeks of the specialist asking for them.
If you are diagnosed with epilepsy, the specialist should classify it by seizure type and syndrome. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. The specialist should agree a care plan with you that should look at lifestyle as well as medical issues.
Epilepsy medicines are the main treatment for epilepsy. They should be started under the guidance of the specialist. Some medicines work better for some seizure types. And some make some seizure types worse. NICE recommends which medicines to use for different types of seizures. They also give information about using epilepsy medicines in pregnancy.
Other treatments are sometimes available, for example the ketogenic diet and surgery. The ketogenic diet is a special diet for children with difficult to control epilepsy.
The guideline says you should be fully involved in all discussions about the benefits and risks of your treatment. The specialist should discuss the following with you.
- Your diagnosis and the type of seizures you have, whether it is an epilepsy syndrome, and what the long-term outlook is.
- The benefits and risks of epilepsy medicines.
- Your lifestyle and personal preferences. These must be considered when you are agreeing the best medicine to use for your epilepsy.
- How epilepsy might affect your life, including safety issues.
- Your care plan, including what options you have if the first medicine you try does not stop your seizures.
After two years without seizures, you should have the opportunity to discuss withdrawing, or continuing epilepsy medicines, with your specialist. If you decide to withdraw your epilepsy medicines, this must be managed by your specialist.
You should be given the information to manage your condition as well as possible. Your GP and specialist should agree all decisions about your healthcare and lifestyle with you. They should provide information (in a format that is useful to you) about a range of issues such as:
- epilepsy as a condition
- treatment options
- risk management
- first aid
You should also be given information about voluntary groups and organisations, such as Epilepsy Action, who can give you more advice and information.
Epilepsy Action has more information about all of the issues listed above.
You should have regular reviews of your epilepsy and treatment. For adults, this is usually once a year with your GP or specialist. If you continue to have seizures or side-effects from your epilepsy medicines, or need particular advice, you should be referred to a specialist by your GP. An example would be if you are a woman planning a pregnancy.
Children and young people should have their review with a specialist, at least once a year, but more if necessary. The specialist should be a doctor who treats and cares for children (a paediatrician). They should have had special training in diagnosing and treating epilepsy.
Difficult to control epilepsy
If your epilepsy is difficult to control, you may be offered a referral to a team of very highly trained healthcare professionals in a specialist centre. This is known as a tertiary centre or tertiary service.
You should be referred to a specialist centre if:
- the doctors are not sure what type of epilepsy syndrome or seizures you have
- your seizures are not controlled with epilepsy medicines within two years of starting them
- you have tried two different epilepsy medicines, but these have not worked
- you have, or are at risk of, severe side-effects from epilepsy medicine
- you have a psychological or psychiatric condition
- there is something abnormal in your brain.
This specialist service should include a team of professionals who are experienced in assessing people with complex epilepsy. They should have access to investigations and medical and surgical treatment.
If your epilepsy is not difficult to control but you have concerns about issues such as pregnancy, you should also have access to the specialist service.
If you have epilepsy and learning disabilities, you should receive the same support and care for your epilepsy as everyone else. You will also need the care of the learning disabilities team.
You should be given information and counselling about how epilepsy and epilepsy medicines may affect:
- becoming pregnant
- pregnancy itself
- caring for children
- the menopause
You should be given this information before you become sexually active, pregnant, or reach the menopause.
Epilepsy Action has more information about epilepsy and women's issues.
Seizures usually end of their own accord, but some people have long or repeated seizures. These seizures may need to be treated with emergency medicines. These are usually midazolam or diazepam. When you are diagnosed, you should be given information about what to do, and who to contact, in an emergency. This might happen at your review. The named person should be included in your care plan.
Epilepsy Action has more information about seizures that last a long time.
Sudden unexpected death in epilepsy
If a person with epilepsy dies suddenly, and no obvious reason can be found after a post-mortem examination has been done, it’s called sudden unexpected death in epilepsy (SUDEP). It’s estimated that SUDEP causes about 500 deaths each year in theUK. Some people with epilepsy have a higher risk of SUDEP than other people with epilepsy.
Healthcare professionals should tell you about SUDEP. They should discuss your own risk of SUDEP, and how to try to reduce this risk.
Epilepsy Action has more information about sudden unexpected death in epilepsy
If care falls below the standards set out in the NICE guidelines
If you think that the care you or your family member is receiving falls below the standards in the NICE guideline, you can take the following action.
- Speak to your GP, epilepsy nurse or other health professional, and refer to the NICE guideline.
- Contact your local Patient Advice and Liaison Service (PALS) for help with making a complaint
Tel: details in your local phone book
- Contact NHS Direct
Tel: 0845 46 47
- Contact Epilepsy Action's Helplines
Freephone: 0808 800 5050
Getting copies of the NICE guideline
This information is just a summary of the guideline.
Full details of the guideline can be found on the NICE website
- A short version of the NICE guideline for people with epilepsy, their families and/or carers, and for the public is available from NICE publications
Tel: 0845 003 7783 (quote reference number N2697).
Epilepsy Action would like to thank Dr Amanda Freeman, Consultant in Paediatrics, Queen Alexandra Hospital, Portsmouth, UK.
Dr Amanda Freeman has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
Updated August 2012To be reviewed August 2014