Hydrocephalus Canada

Transition into the Adult Health Care System

Print PagePrint PageSend by emailSend by email

Spina bifida and hydrocephalus (sb/h) are both chronic medical conditions. This means they are permanent or lifelong conditions that have no cure. While there have been many advances in the diagnosis and treatment of sb/h over the years, there remain many challenges. One of the hardest for youth is finding the medical services you need to stay healthy as you become teens and young adults and are no longer eligible for paediatric services and doctors. This section provides you with a number of activities to assist you in making the transition from paediatric to adult centred medical care.


Activity #1: Managing your own Medical Care Check list

Activity #2: MyHealth Passport

Activity # 3: How to access healthcare as an adult?

Activity #4: How do you prepare yourself
for your first visits with new doctors?


Activity #1: Managing your own Medical Care Check list

For each of the following statements select one response that best describes your situation. There aren’t any right or wrong answers. Try to answer every question.





Not sure



 I can explain my medical history.






 I know how often I should
see my  doctor.






 I have my own copy of my
health  records.






 I only see a doctor when
someone  makes me.






 I know the type of healthcare  providers I will need to 
see as an  adult.






 I have my doctors’ contact  information.






 I have doctors who listen
and work  with me.






 I schedule and keep my own  doctors’ appointments.






I ask questions during doctor/health care visits.






 I like to have someone with me  when I visit my doctor.






 I speak up for myself and tell  others what I need during
health  care visits.






 I know how what a health advocate  is and how to get one
if I need  one.






 I sign medical consent forms for  myself.






 I talk to my healthcare  provide/doctor about the effect of  my condition on my sexual  functioning .






 I talk to my health provider about  how my condition is affected by  the use of tobacco, alcohol and  drugs.






 I talk to my health provider about  ways to
manage stress.






 I have someone to talk to when
I  feel sad.






 I can select over the counter  medication for minor illness
(i.e  cold).






 I know what medication and  dosage I take.






 I know how to get prescription  refills and medications.






 I know where the closest  emergency room is.






 I know how to use transportation to  get to medical appointments.






 I have contact information for  family and friends in case of  emergency.





Now identify 3 areas that you want to focus more on or learn more about. Create an action plan using the process from Session 1 Activity 3 (link back on website) to help you.


Activity #2: MyHealth Passport

MyHealth Passport is a wallet sized card that lists your medical conditions, past procedures/treatments, medications, allergies, and other health issues. 

When you go to the MyHealth Passport site (www.sickkids.ca/myhealthpassport), you can chose spina bifida or hydrocephalus from the list of over 50 conditions when you start to fill out your passport.

Personal information can be entered and printed. You decide what information to put in, but you should create the Passport with a health care provider who can provide you with accurate information. 

Carry the passport with you at all times and present it to providers when needed. In addition to a printed copy, you can also email it to yourself to have an electronic version.


Activity # 3: How to access healthcare as an adult?

This process starts with your family doctor. He/she provides referrals to other healthcare specialists and services that you may need. Listed below are some of the healthcare services or doctors that you might need over time:

Neurosurgery: Is the surgical specialty that deals with the nervous system, including the brain and spinal cord.
OT: Occupational Therapist. Professional specializes in helping children and adults improve their fine motor skills – such as writing or using a spoon and or self-care skills.
PT: Physio therapist: Specializes in helping children, and adults improve their gross motor skills- the skills such as sitting and waling that involves large muscles of the body.
Podiatrist: A health professional that diagnoses and treats problems of the feet
Orthotist: Person who designs, fabricates, and fits braces or other orthopedic appliances prescribed by doctors. Orthotics are devises that used to support or correct the function of a limb or the torso. They are used to:

  • restrict movement in a given direction
  • assist movement generally
  • reduce weight bearing forces for a particular purpose
  • aid rehabilitation from fractures after the removal of a cast
  • otherwise correct the shape and/or function of the body, to provide easier movement capability or reduce pain

Gastroenterology: (Medicine) the branch of medical science concerned with diseases of the stomach and intestines
Physiatrist: A physician who specializes in physical medicine and rehabilitation. Physiatrists specialize in restoring optimal function for people with chronic conditions that affect or injuries to the muscles, bones, tissues, or nervous system.
Case Managers: A social worker, nurse who plans or other individuals coordinates and monitors medical services for you while making sure you are receiving a high quality of services.

Activity #4: How do you prepare yourself for your first visits with new doctors?

The single most important way you can stay healthy is to be an active member of your own health care team. Here are some tips to help you and your doctor become partners in improving your health care.

Prepare for your appointment

  • Update your MyHealth Passport.
  • Ask what information your new health care provider will need such as x-ray films, test results and medical records.
  • Arrange for a support person such as a friend, case manager or parent to come to your first appointment, if you want one.

Give information - Don’t wait to be asked

  • You know important things about how you feel and your health history. Tell your healthcare provider what you think he or she needs to know.
  • It is important to tell your healthcare provider personal information even if it makes you feel embarrassed or uncomfortable.
  • It’s okay to speak openly with your health providers.
  • Bring your MyHealth Passport with you and keep it up to date. Have a copy placed in your medical record.

Get information - Ask Questions

  • It’s important to ask questions. If you don’t your health care provider may think you understand everything
  • Write down your questions before your visit.
  • List the most important ones first to make sure they get asked and answered.
  • You might want to bring someone with you to help you ask questions. This person can also help you understand and or remember the answers.
  • Ask your doctor to use pictures if that might help explain something that you do not understand.
  • Take notes or ask your support person to take notes. Use your personal health care record to keep your notes in one place.
  • Bring a tape recorder and ask your healthcare provider if you can record the conversation to help you remember important information. But always ask first.

Take information home

  • Ask for written instructions.
  • Ask your health care provider for brochures, audio tapes or CDs that can help you. If not ask how or where you can get such materials.

Follow up - Once you leave the healthcare providers office

  • If you have questions, call.
  • If your symptoms get worse or if you have problems with your medicine call.
  • If you had tests and do not hear from your doctor, call for your test results.
  • If your health care provider wants you to have certain tests or see another healthcare provider or specialist, they will usually make those appointments for you, but make sure that you follow up with your healthcare provider to get the location, date and time.