Epilepsy Ireland Transition Nurse Yvonne Owen gives advice to young people with epilepsy as they move into adulthood.
Moving from paediatric to adult services can be a daunting prospect for some people. It may mean having to repeat your story all over again to complete strangers and getting to know lots of new names, faces and places. But you may also feel that you are ready for a move. You may feel like you have out-grown the paediatric services and your needs are better suited to an adult setting. 'Transition' is what we in healthcare call the process of moving from paediatric to adult services. So how can you get ready for your transition?
Firstly we will discuss self -advocacy. This means the ability to speak up for yourself about things that matter to you. As a child your parents have been your advocate - asking questions and making decisions on your behalf. As you get older the responsibility shifts from your parents to you and you may start to make your own decisions about your health. Your parents can still support you but it is important that you begin to take ownership and get more involved in independently managing your epilepsy.
How can you build self-advocacy and independence skills?
Start early – it's never too early. No matter what your age you can get involved. As you become a teenager / young adult you should gradually take on more responsibility so that by the time you reach 18 you are nearer to being your own advocate.
Practice - for some people this may come naturally but for others it may take time to be comfortable with the changes of responsibility. Lots of practice will help you gain the confidence and skills you need to become more independent in managing your condition.
Learn about your epilepsy – knowing the facts and understanding about your epilepsy can help you make informed decisions about your own health. You can ask your doctor or nurse to explain it to you or contact your local Epilepsy Ireland office or go on line to find out more. Wherever you go make sure it's a reputable source of information. There is lots of information out there that is not accurate and can lead to even more confusion.
Know your medications - Find out the names doses, side effects of your medication. Practice getting your own tablets organised. Get a pill dispenser from your chemist and organise your medication into morning and evening time doses. This can help you forgetting doses. Find out how to get a prescription or more supplies if you need them.
Ask and answer questions - Instead of taking a back seat and listening to others talking about you start getting involved. Have a list of questions ready before you come to clinic. Often people forget to ask the questions run out of time. Talk to your parents beforehand as they may have some of the answers already. Practice answering questions -if you don't know the answer that's okay your parents may be able to help you out. You are not expected to know everything.
Spend some time alone - Spending time alone with the doctor or nurse at clinic gives you a chance to speak up for yourself and to practice being more independent. It may only be for a few minutes to begin with but over time you can increase the time you spend alone in clinic. Some clinics will encourage you to do this but if not don't be afraid to ask.
Know your rights - Once you are 16 you can attend a doctor/nurse on your own. You might like to talk to your team on your own about concerns or worries that are private and confidential. If your team feel it is something that your family should hear about they will discuss this with you and try to help you with talking to them about your concerns or worries.
Making appointments –try to practice ringing the secretary to arrange or reschedule your own appointments. Keep a diary or calendar to remind you of when you need to come to clinic.
Know where to get help- Find out where to get more information or help to support you. Know the names of your epilepsy team and who to contact if you have an issue with your epilepsy. Epilepsy Ireland can advise you on what supports are available to you so you can get on with your life.
Please note: The Transition Nurse Help line 2 Year Project with Yvonne Owen finished on May 20th 2019