Information for the public
Special considerations for certain groups
Epilepsy is a condition that can affect anyone. Whoever you are, and whatever your age, you can expect the same level of care as everyone else with epilepsy. This includes the standard of treatment, access to specialist services and provision of information, all of which should be available at a time and in a way that is appropriate to you as an individual.
Women and girls with epilepsy need particular information and support to make informed decisions about their care. All healthcare professionals who treat or support women and girls with epilepsy should be familiar with the issues affecting them and the information available in these areas. They should be able to put women and girls in contact with counselling services if this is necessary.
Women and girls with epilepsy (and their partners, if appropriate) should be offered relevant information and counselling about how epilepsy and epilepsy medication may affect contraception, becoming pregnant, the pregnancy itself, breastfeeding, caring for children, and the menopause. This information should be tailored to each woman or girl's needs and should be offered before they become sexually active, become pregnant or reach the menopause.
If it's needed, the information should also be passed on to people who are close to the woman or girl; this may include her family or parent or carer.
Taking contraceptives and epilepsy medication at the same time can cause either of these to be less effective. A woman's healthcare professional should discuss this with her, and the different forms of contraception and options available to her. This discussion should also take place with girls who may need to carry on taking medication as they get older and become sexually active.
If there's a chance that a woman or girl taking epilepsy medication could become pregnant, she should be offered a daily supplement of folic acid (5 mg per day). This is because some drugs used to treat epilepsy can damage a developing baby and taking folic acid is thought to help stop this from happening.
Epilepsy can be passed on in the genes from a parent to their child. The risk of this happening is small overall, but will depend on both parents' family history. An appointment with a 'genetic counsellor' may be offered if one parent has epilepsy, particularly if they have epilepsy that is thought to have a genetic cause or they have a family history of epilepsy. Discussions with a genetic counsellor can help people make decisions about their individual risk of having a child with epilepsy.
The UK Epilepsy and Pregnancy Register has been set up to collect information about how epilepsy and epilepsy medication can affect pregnancy, labour and the baby. The more women who join it, the more useful the results will be. So all pregnant women and girls with epilepsy are encouraged to put their details on the register or to let a healthcare professional do it for them (see www.epilepsyandpregnancy.co.uk ).
Most women and girls with epilepsy have healthy pregnancies, but complications in pregnancy and labour are more common than in those who don't have epilepsy. For the best possible care, a woman or girl with epilepsy should receive care during her pregnancy from both her epilepsy specialist and an obstetrician (a doctor who specialises in pregnancy and childbirth).
It is important to try to make sure that a woman or girl with epilepsy does not have seizures while she is pregnant or when she is trying to get pregnant. Generally, the number of seizures doesn't tend to go up during pregnancy or in the first few months after the birth. The healthcare professional should discuss with the woman or girl the type of epilepsy that she has, the risk of having seizures during pregnancy, and what effect having a seizure would have on her and her unborn baby.
However, if the woman or girl wants to reduce or stop taking medication when she is pregnant, the risks and benefits of doing this should be discussed with her. She should be told about her risk of status epilepticus (see 'If you have status epilepticus') and of unexpected death (see 'Sudden unexpected death in epilepsy (SUDEP)'). Where appropriate, her specialist should be consulted before the woman or girl and her GP make decisions about medication.
Normally blood levels of epilepsy medication don't need to be checked during pregnancy. But if seizures happen more often or it seems likely that this will happen, then it may be useful to keep a check on levels of medication in case the dosage needs changing.
If a woman or girl is taking epilepsy medication, she should be offered an ultrasound scan at 18–20 weeks to check that the baby has developed as expected (this is called the anomaly scan). Earlier scanning may be offered to allow any major deformities to be detected sooner.
Because there is a small risk of having a seizure during labour, women and girls are recommended to give birth in a maternity unit with procedures and facilities in place to care for those with epilepsy.
If a mother is taking an enzyme-inducing form of epilepsy medication, she should be advised that her baby should have a vitamin K injection at birth.
Mothers who have epilepsy should be encouraged to breastfeed, however they should be supported in their choice of how to feed their baby. Healthcare professionals should discuss with the mother any potential risks associated with taking epilepsy medication while breastfeeding and how these balance against the benefits of breastfeeding so that she can make a decision that suits her and her baby.
Epilepsy is common in people with learning disabilities, and people with learning disabilities and epilepsy should receive the same standard of care as those without learning disabilities. People who have epilepsy and a learning disability have a higher risk of unexpected death (see 'Sudden unexpected death in epilepsy (SUDEP)') or of dying from an accident or injury. Healthcare professionals should discuss these risks with them and their advocates, family or carers. Potential safety problems should also be assessed (see 'Checking the effect of the epilepsy' below).
Epilepsy can be difficult to diagnose in a person with learning disabilities. When assessing a person with learning disabilities, the specialist should make sure that they take a full medical history. They should also ask any witnesses what happened during the person's seizure, and if possible get other information about the seizure such as a video recording, to help them with the diagnosis. When necessary, healthcare professionals should provide information and advice to help people to describe clearly and accurately what they see happening when a person is having a seizure.
For children and young people with a learning disability, investigations should be carried out to try to find out the cause of the epilepsy.
If needed, the person with learning disabilities should be referred for a neuropsychological assessment.
A person with learning disabilities may need particular care and attention while they're having some of the tests for epilepsy. For example, it might be necessary to give a person an anaesthetic before an MRI scan to help ensure they stay still during the scan.
Healthcare professionals should encourage, support and work with the person with learning disabilities, and their advocate, family or carers, to develop an epilepsy care plan. They should make sure there is enough time during appointments to help with this.
A person with epilepsy and learning disabilities should have access to the same treatments and care as any other person with epilepsy. However, some epilepsy medication may affect the behaviour or memory of a person with learning disabilities, and this should be considered when decisions are being made about which medication to try as part of the epilepsy care plan.
The combination of learning disabilities and epilepsy can present some potential safety problems which need to be thought about. Healthcare professionals should assess how safe a person with learning disabilities is likely to be if they have a seizure at certain times, for example, while having a bath or a shower, preparing food or using electrical equipment.
They should also assess:
what might happen if the person had a long seizure or repeated seizures (for example, would there be someone around to help?)
what effects there might be if the person has a seizure when they are out or with other people
the risk of unexpected death (see 'Sudden unexpected death in epilepsy (SUDEP)'), and
whether the person's living arrangements are suitable for their circumstances (for example, if they live on their own).
Healthcare professionals should be aware of the different ways that having epilepsy can affect a young person's life. They should also know that good relationships with family and friends and at school can help a young person deal with their epilepsy. Healthcare professionals should consider these issues when they're talking to a young person about their epilepsy, and when they are offering treatment and support.
Healthcare professionals should ensure that they encourage young people with epilepsy to be fully involved in discussions and decisions about treatments and ways of managing their seizures. They should listen to the young person's wishes and beliefs (and, if appropriate, those of their family or carers) and should take these into account during these discussions.
As they get older and start to move towards or into their teenage years, young people should have their diagnosis and treatment looked at again. This is to make sure that they're still getting the care that's most suited to them.
The arrangements for care of adults with epilepsy are different from those for children and young people. It's important that the changeover is handled smoothly and that the young person is given help and support. For example, a young person should have one doctor in their teenage years who they can get to know, and who should help them as they change over to the adult service.
Before a young person moves to the adult service, they should have a review of their diagnosis and treatment. They should also be given up-to-date information on support groups and charities and help to contact them.
Older people with epilepsy should receive the same standard of care as other people with epilepsy. When agreeing an epilepsy care plan with an older person with epilepsy, healthcare professionals should also take into account:
any other conditions the person may have
possible reactions between epilepsy drugs they may offer and any other medication the person may be taking, and
how taking multiple drugs may affect the person.
People from black and minority ethnic groups may have different cultural and communication needs which should be considered during diagnosis and management. An interpreter may be needed or other means of ensuring that a person's needs are appropriately met.
If an interpreter is needed, they should have both cultural and medical knowledge so that they can translate any information accurately. Interpreters from the family are generally not suitable because of issues such as confidentiality, privacy and personal dignity.
Information (see 'After your diagnosis'), including information about employment rights and driving, should be available in an appropriate format or through other appropriate means for people who do not speak or read English.