After your diagnosis

If you are diagnosed with epilepsy you should be given a chance to talk about your diagnosis and how you feel about it with a healthcare professional – this will most likely be your specialist. Your specialist should explain what type of seizures and epilepsy syndrome you have, their possible effects, and how they might change in the future. They should help you to decide on a plan to manage your condition, and should discuss with you the importance of learning skills to increase your confidence in living with epilepsy. They should also give you details about where to find more help and support.

Who will provide your care?

When you are living with epilepsy you are likely to receive treatment and care from more than one healthcare professional. You should be given the name of one member of your healthcare team who is responsible for making sure you have all the information you need. This will usually be the healthcare professional you see most often, for example your GP or specialist. You should be advised to register with a GP if you are not already registered, and you should be given details of how to contact a specialist service if you need to.
An epilepsy specialist nurse should also be involved in your care. These nurses are trained and have experience in caring for people with epilepsy. They can provide you and your family or carer with information about epilepsy, and they can make sure that you are getting the right help and support from other healthcare professionals. They can also provide a link between you and your specialist.

Information about epilepsy

Your healthcare professional should offer you information about epilepsy in a format that you find useful. They should make sure you have relevant information when you need it (for example, before you make important decisions such as planning for a baby or decisions affecting your career or work). Every time you see your healthcare professional they should make time to check that you have all the information you need. They should use a checklist to make sure they cover everything you need to talk about.
You and your family or carer should be given information about:

• your diagnosis and treatment options available to you, including any possible side effects of medications
  
• what can trigger seizures and how to control or avoid them
  
• what's likely to happen in the future
  
• how to manage living safely with epilepsy, including advice about first aid
  
• psychological issues, such as depression and anxiety
  
• practical issues such as social security benefits, insurance issues, driving and road safety
  
• education and healthcare at school
  
• employment and independent living for adults
  
• the importance of telling an employer if you have epilepsy (contact support groups or charities if further information is needed)
  
• reducing the risk of sudden death caused by epilepsy (this is sometimes referred to as SUDEP, which stands for sudden unexpected death in epilepsy; see 'Sudden unexpected death in epilepsy')
  
• status epilepticus (see 'If you have status epilepticus')
  
• how epilepsy can be affected by, and can affect, your lifestyle (for example, the use of illegal drugs, alcohol, sexual activity and the effects of not getting enough sleep)
  
• family planning and pregnancy
  
• local and national support groups and charities, and how to contact them.
  

Questions you may want to ask

• Does having sex increase my chance of having a fit?
  
• Is there some written information (like a leaflet) about epilepsy that I can have?
  
• Can you tell me about any support groups in the area?
  

Children and young people

Children and young people with epilepsy should be offered special activities tailored to their age to help them learn to manage their condition. There should also be arrangements in place for when young people make the move to adult services (see 'Special considerations for young people').

People at risk of seizures

If you have never had a seizure but you have had a severe brain injury, you have a strong family history of epilepsy or you have learning difficulties, you are at risk of developing seizures. You should be given information about epilepsy and the possibility of having seizures as soon as possible (that is, before you have any seizures).