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Explaining to others about epilepsy

a man talking to group of friends.

It is important to consider who else needs to know about your child’s or your own epilepsy. People often do not understand epilepsy, will not know how it affects you or your child in particular, and may wish to help but not know what to do. It is really useful for these people if you can provide them with the information that they need and discuss it with them. The main reasons that others should be told include:

To give you or your child practical and emotional support.

  • Because they have a responsibility for your child.
  • To be able to provide a service for you or your child.
  • To keep you or your child safe.
  • To understand you or your child’s seizure type(s) and therefore provide first aid.
  • To understand other areas relating to the epilepsy, for example concentration or memory issues in a school environment.

Deciding who to tell

 If you are unsure who should know about your own or your child’s epilepsy, it may be useful to talk it over with an Epilepsy Ireland Community Resource Officer, or an Epilepsy Nurse Specialist in adult or children’s services. Epilepsy Ireland can support you with delivering talks in schools and healthcare environments if required.

When choosing who you should tell, the following questions should be considered

  • Who is around you/your child with epilepsy the most?
  • Who is your child with when they are away from you?
  • Who would be able to support you/them and want the best for you/them?
  • Who would quickly notice any signs or symptoms of seizures?
  • Who can give practical help?
  • Who can be trusted to make the best decisions?
  • Who can be relied on in an emergency?

Whoever you tell will need information about your child’s seizure type and the correct first aid. Some people such as teachers will need further information on the effects epilepsy and medication can have on your child’s behaviour and concentration. If teens are taking up work experience or part-time jobs, their employer may need to know. Consider what the following people may need to know and what information to give them:

Who may need to know?

  • Family, partners and close friends need to know what to do to support you/your child.
  • Health professionals like dentists, doctors and pharmacists. should know so that they can make sure any treatment is safe to use.
  • Teachers need to know how to deal with seizures in class and how best to support a student with epilepsy.
  • Anyone who has responsibility for a child with epilepsy needs to know, if they are supervising your child – this category includes child minders, coaches, summer camp staff and others.
  • Work experience/Practical Lab in school/part-time employers may need to know.
  • Employers may need to know, depending on the type of job
  • The State Examinations Commission need to know if a student needs Reasonable Accommodations in Junior or Leaving Cert. exams.
  • Sports coaches, lifeguards and gym instructors need to know about first aid and safety.
  • Insurers will request information about health for most personal policies/travel insurance.
  • Medical assessors for disability payments will ask detailed health questions.
  • The HSE Long Term Illness Scheme will need to know about your own or your child’s diagnosis in order to give medication free.
  • The CAO (Central Applications Office) will need to know when a student wishes to apply for the DARE (disability access route) programme for third level.
  • Disability officers in colleges may need to know if the student requires extra supports. You should also let them know if the student has recently been, or is likely to be, in hospital for an extended period.
  • National Driver Licence Service or Road Safety Authority will need to know for driver licensing purposes.