About the Pediatric Neurosurgery Fund
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You know your child best and we understand that as a parent, you want what is best for him or her. Unfortunately, there may be times during your medical journey where you find that services or support are not adequately addressing your child’s needs. It is you who knows your child’s unique wants and needs, what they like or don’t like, and therefore, are the best person to advocate for your child.

Advocacy is about speaking up on behalf of your child to help make sure that your child receives the best possible care. It is not always easy for parents to feel comfortable speaking up for their child because they may not always be familiar with the medical language, have difficulty disagreeing with the professionals, or in general feel overwhelmed to cope with everything. There is no one-way to advocate well for your child but there are some basic steps to help you get started on the right path. Planning ahead and being prepared is always a good idea, will help you to focus your thoughts, and help you not to forget what it is you wanted to address. The best thing you can do is to do is to be patient with yourself, take a big breath, and learn how to advocate effectively for your child.

Try and remember that everyone involved with your child’s care truly believes they are also doing the right thing. While you know your child’s personality best, try and remember that health care professionals may know what is best for your child medically. You, your child, and the health care workers need to work as a team. At times, medical professionals may make decisions that you feel are not the right ones – before you react and feel they are not listening to you, always ask them to explain, or re-explain, as necessary until you feel heard and good about the plan ahead. Negotiating your child’s care is the key, so stay calm but be assertive.

Key points for advocating for your child:
  1. Nurture a good working relationship with the medical professionals who are involved in your child’s care. Do not be afraid to ask questions, several times if needed, to fully understand the answers.
  2. Know how to contact your medical professionals – during working hours and also after hours, weekends, or holidays.
  3. Learn as much as you can about your child’s diagnosis, treatments, medications, surgeries and overall care.
  4. Maintain good records and journals. These will help everyone to have an accurate picture of what is happening to your child, as well as not having to rely on your memory alone. Ask for copies of tests or X-rays if possible. Many medical professionals are happy to provide you with one.
  5. When you are addressing your concern, stay calm, state your point in a clear and confident manner – by offering respect, you will likely receive respect in return.
  6. Encourage your child to advocate for him or herself. You may not always be around or on hand to speak for your child so it is important for you to give your child the confidence to speak up for themselves.