Transitioning to adult neurology care

How do I arrange for ongoing care in the adult system?

Make sure you have a family doctor. Your health is not only related to your neurological condition. As you get older, you may develop health problems that are unrelated to your neurological condition. If you don't have a family doctor, or if you are not happy with your family doctor, you need to find another as soon as possible. Your family doctor will help you with with other non-neurological health issues. This is the person you will go to with your health concerns, and for preventative things like immunizations.

Tips on finding a family doctor:

• In Ontario: register for Health Care Connect. Register online or by phone at 1-800-445-1822.
• In Quebec: visit the Portail Santé Mieux-être and register online.
• Ask your parents or other adult family members to see if their family doctor is accepting new patients.

How will my care change?

You will notice some differences in the adult health-care system:

• You will be responsible for watching and reporting on your health.
• You can expect to see the doctor or nurse alone during your visit.
• Your new neurology team will probably discuss your health with you first, rather than with your family. If you want your parents or someone else to be with you and receive information, you can also request that. You may wish to bring a support person to appointments where you will be receiving a lot of information from your doctor.

It's important to take an active role in your health and health care. You can increase your chances for a healthy life if you:

• understand your condition and what you need to do to take care of yourself
• get regular medical care
• follow your treatment plan and take your medications as prescribed

What questions can I ask my health-care team?

Your new health-care team will be very willing to talk with you about things like:

• smoking, drugs and alcohol
• driving or getting your driver's license
• feeling different, anxious or depressed
• relationships or dating
• fitting your health care in with school and work
• career planning and insurance (for example, insurance to pay for medications)
• birth control and pregnancy

These concerns are not unusual, please feel free to discuss them with your health-care team.

What do I need to bring to my appointments?

Make sure to bring:

• your health card
• your hospital card (you will get one at your first appointment, if you're seeing a neurologist at TOH)
• the name and address of your family doctor
• a list of questions
• a list of medications you're taking (with your pharmacy's phone number)
• a summary of important health information

Tools like the MyHealth Passport will help you to keep track of your health information. You can create your personal passport here.

It will also be important that you can answer questions about:

• your neurological condition
• procedures and surgeries you have had in the past
• medications you are taking
• any other medical problems you have

How can I plan ahead for my appointments?

• Bring a support person or family member to the clinic if this would make you feel more comfortable.
• Think about how you will be getting to your first appointment.
• Find out how to get to the building and clinic.
• Find out where parking is available if you will be driving.
• Give yourself enough travel time to get there on time.

What will happen when I arrive for my first appointment?

All patients (first time patients and follow-ups) need to check in at the clinic reception desk. If you are seeing a neurologist at TOH, the receptionist at the hospital will make you a card at your first visit. Keep this card in your wallet. Just like at CHEO, you should plan to be at your appointment for several hours.

You may have any of the following tests before you see your doctor:

• EEG
• MRI
• bloodwork

Who will be part of my health care team?

Your new team will include:

• neurologists
• neurophysiology technologists
• registered nurses
• social workers
• dieticians
• support people you choose

Remember that you are the most important member of your health-care team. You are the best person to look after your own interests.

How can I take control of my health?

Getting older means that you will start to take control of your health and personal goals. Your health-care team can work with you to come up with a treatment plan that will help you reach these goals. Some good ways to start taking control of your health:

• Write Stuff Down. It's a good idea to write your questions down ahead of time, so you don't forget to ask. Leave space to write down the answers.

• Don't be shy. If you don't understand something, let your care provider know and them to explain things. Keep asking until you understand. It is important that you get all the information you need and that you understand it.

Take charge of your medication:

• Know the names and dosages of your meds.
• Keep track of when you need refills and new prescriptions.
• Before your next appointment, check to see if you are going to need a prescription or refill, so you can ask for it during your appointment.
• Add any new medications to your MyHealth Passport (and keep this with you, in your wallet, purse, or bag).