This section talks about what you can do to develop a good partnership with your child’s team.

“I always talk about building bridges with your healthcare teams and try not to burn those bridges down. That being said, not everyone is a good fit for you and your team and that is okay. We would talk to the organization supplying that person and work to transition that person out and transition somebody new in.” – Darren, father of Tyler

Keep a record of all the details about your child’s treatment. Some people use a binder or create a record on their computers. Find a system that helps you organize important information, including: 

• List of medications and the doses your child is taking. 
• Any complementary or alternative therapies your child is using such as herbs, supplements, Chinese medicine, homeopathy, and naturopathy. Some natural health products can affect the way other medicines work. It’s important to tell your doctor what your child is taking.
• Healthcare provider contact information.
• List of expenses related to the care of your child. If you file for tax credits or apply for help from a government program or employment benefit, you will have to fill out forms and provide receipts. 
• One-page summary of your child’s medical history, treatment plan, and goals of care. This summary can be very useful when you meet new healthcare providers.
• A photo of your child when they looked well. This helps the team know what your child was like before they got sick.

“You can only absorb so much information at once. You may only hear 10 per cent of what your team is telling you. For me, I had a book that I would write everything down in. I would keep any questions that popped into my head and when we met with doctors and care team, I would have that book.  You are so much in grief in all different points of the journey that it was helpful for me to be able to go back to my notebook to  look at things and absorb and process things.” – Danielle, mother of Keaton

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Help make the most of the time you have with your child’s team. 

• Write a list of what you want to talk about so you don’t forget things. List questions, concerns, and any changes in your child’s condition. Make note of any emotional or spiritual needs that your child or family has.
• List anything you need from the healthcare team, such as a letter for your employer or help with finding more support. 
• Write down your child’s questions or concerns if they are old enough to be able to express them.
• Choose the most important things on your list. There may not be time to talk about everything on your list in one appointment. 

The healthcare system is set up to work in a way that is effective and efficient for healthcare professionals, but not always for families. You may have to wait for more than one appointment or wait for test results before you see your doctor. Here are some ways to prepare:

• Arrange care for your other children.
• Bring:

• • Extra diapers and a change of clothes for young children
  • Snacks for your child and for yourself
  • Blanket or toy that comforts your child
  • Things to help pass the time like magazines, books, or a simple game

• If you think your child might be admitted to stay in hospital, bring overnight supplies including toothbrushes and pajamas .
• Bring a family member, friend, or volunteer, to help listen and take notes.
• If you speak a different language than your team members, ask them to arrange for an interpreter.
• If you are working with an alternative health care provider or spiritual care provider, you can ask that they be included as part of your child’s team.

Use your time well:

• Bring your one-page summary, lists of medications, and questions.
• Start with the most important questions or concerns on your list first.
• Encourage your child to take part and ask their own questions, if possible.
• Talk about any changes to the treatment plan or medication. Make notes and write down answers to your questions. If you don’t understand something, ask the team member to explain again.
• If you need more time to talk, make another appointment, or ask if you can talk to someone by telephone.

Talk with your healthcare team coordinator about how to make visits easier for your child. Ask them to:

• Book appointments for different clinics or tests all on one day. Your child will miss fewer days at school. You will save money on parking, meals out, and childcare for your other children.
• Have members of different healthcare teams come to one place in the hospital to see your child. That way, your child won’t get as tired. 
• Find out which routine follow-up appointments are important. You may be able to stop going to some or not go to them as often.
• Make sure your community care team and main healthcare team update each other directly about changes to your child’s condition and care. 

You know your child best. Your team knows how to support children with serious illness. Together, you can develop the best plan of care for your child.

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