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The Epilepsies: You, Epilepsy and the NICE Guideline

October 2004

If you have a diagnosis of epilepsy, you are not alone. Around 450,000 people in the UK have epilepsy, that is one in every 131 of the population.

BrainThere are many types of epilepsy (around 40). Many only last a short time, whilst others are life-long. Some rarer forms of epilepsy can result in premature death and are associated with abnormalities in the brain. While most epilepsies respond effectively to anti-epileptic drug (AED) treatment and seizures are controlled, some do not. While some respond to brain surgery, others do not.

What is the NICE Guideline?

The National Institute for Health and Clinical Excellence (NICE) is part of the NHS. It is the independent organisation responsible for providing national guidance on treatments and care for people using the NHS in England and Wales. The guidance is intended for health care professionals, patients and their carers to help them make decisions about treatment and health care.

The information that follows is a summary of the newly published NICE Guideline for the diagnosis and management of epilepsy. It applies to adults and children with epilepsy, including the move for young people from children’s to adult services. It aims to make you, as a person with epilepsy or carer of a child or adult with epilepsy, aware of the services available and to have the confidence to ask for the treatment and information you need. (Where we mention you or your child this should be read to include their family and/or carers where appropriate).

What the guideline says about epilepsy

Diagnosis

NICE says that any person who has had a possible seizure should be seen within two weeks by a specialist medical practitioner with training and expertise in epilepsy (referred to as a specialist in this information). This specialist should make a diagnosis, using tests such as EEG (electroencephalogram) and MRI (magnetic resonance imaging) where appropriate. The tests should be available within four weeks of a specialist asking for them.

If your diagnosis is epilepsy, the specialist should classify it by seizure type and syndrome. A care plan should be agreed with you and should include information about lifestyle as well as medical issues.

Treatment

Anti-epileptic drugs are the main treatment for epilepsy and should be started under the guidance of the specialist. Other treatment options are sometimes available, for example diet (for children) and surgery. The guideline says you should be fully involved in all discussions about the benefits and risks of your treatment. The doctor should discuss the following with you:

  • The diagnosis and the seizure type, syndrome and likely course of the condition.
  • The benefits and risks of AED treatment.
  • Your lifestyle and personal preferences, which must be considered when deciding the best drug for you.
  • Individual risks of epilepsy, living with seizures and prevention of accidents.
  • Your care plan that explains what other options are available if the first drug does not stop the seizures.

After two years without seizures you should have the opportunity to discuss with the specialist the benefits and risks of withdrawing or continuing AED treatment. The withdrawal of anti-epileptic drugs must be managed by, or under the guidance of, the specialist.

Information

You should be empowered to manage your condition as well as possible, and be fully involved with your specialist and GP as a partner in all decisions about your health care and lifestyle. Information should be available (in a format that is useful to you) on a range of issues such as: epilepsy as a condition; diagnosis and treatment options; risk management; first aid; driving; employment and education.

Child and fatherAccess to voluntary groups is important as they can provide additional information and support. Their details should be made known to all people with epilepsy.

Review

Adults with epilepsy should have a review at least once a year by their GP or specialist. If you continue to have seizures or side effects or need particular advice (for example if you are a woman planning a pregnancy), you should be referred to a specialist by your GP.

Children should be reviewed by a specialist at least once a year, but more often if necessary.

Difficult to manage epilepsy

You should be referred to a specialist centre when one or more of the following apply:

  • Your epilepsy is not controlled with medication within two years.
  • Your epilepsy is not controlled with medication after two drugs have been tried.
  • You have, or are at risk of, unacceptable side-effects from medication.
  • Your epilepsy is associated with a psychological and/or psychiatric condition.
  • When there is possible doubt over the diagnosis of the seizures and/or syndrome.

This service should include a multi-disciplinary team who are experienced in the assessment of people with complex epilepsy and have access to investigations and both medical and surgical treatment.

If you have controlled epilepsy but have concerns about issues such as pregnancy, you should also have access to this service.

Learning disabilities

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. The management and treatment of your epilepsy should be carried out by a specialist.

Women

All women with epilepsy should be given information and counselling about contraception, conception, pregnancy, breastfeeding, caring for children and the menopause as and when appropriate.

YogaPreconception counselling should be available for any girl or woman who is sexually active because there is a risk that some AEDs can harm the unborn child. Your doctor should discuss with you the benefits of remaining seizure free during pregnancy and the benefits and risks of treatment with AEDs while you are pregnant. The small risk of some malformations in the baby can be reduced by taking 5mg (milligrams) of folic acid per day.

Emergency care

Seizures usually end of their own accord, but some people experience prolonged and/or repeated seizures. These are medical emergencies and need urgent care and treatment. At diagnosis and review, all people with epilepsy should be given information about what to do and who to contact in an emergency situation. This should all be covered in your care plan.

Sudden unexpected death in epilepsy (SUDEP)

If a person with epilepsy dies suddenly and, after investigation, there is no obvious reason, it is called sudden unexpected death in epilepsy (SUDEP for short). Although SUDEP is rare for many types of epilepsy, risks need to be assessed individually. You should be given information about it and how to reduce the risk. SUDEP is less likely to happen if your seizures are being controlled effectively and you and your family or carers are alert to the risks of potential night-time seizures. When SUDEP has happened the family should be offered referral to bereavement counselling and a SUDEP support group.

If care does not match these standards

The Joint Epilepsy Council and its members believe the new NICE guideline sets excellent standards of care for people with epilepsy and believe all people should have access to care that meets these standards.

If you think that the care you or your family member is receiving does not meet the standards in the NICE Guideline, you can take the following action:

Full copies of the NICE Guideline

This information is just a summary of the guideline. Full details of the guideline can be found in the following ways:

  • On the NICE website - www.nice.org.uk/CG020
  • A version of the NICE guideline for people with epilepsy, their families and/or carers, and for the public is available from the NHS Response Line - 0870 1555 455; quote reference number N0741 for an English version and N0742 for an English and Welsh version.
  • Quick reference guides for health care professionals are also available from the website or from the NHS Response Line (quote reference numbers N0739 and N0740 for the quick reference guides on the diagnosis and management of epilepsy in adults and children, respectively).

This information is available as a leaflet, which is available by downloading it from our website or by phone from our freephone helpline on 0808 800 5050.