Advocacy through dialogue

How to get the best care for a sick child using your own research.
BRAD FISHER

If the time comes when your child is faced with severe medical challenges, you might find that you have been cast out to sea in a boat with no oars, sails, or motor.

All of a sudden, your life will change 180 degrees. Daily routines will have to change to support the needs of the sick member of your family and the other family members. All the small problems in daily life will now become trivial. You will find little help where you most expect it and some help where you least expect it. Angels in many disguises will appear in your life to help you get through this transitional period.

The first thing you are going to think to yourself is, "Thank G-d I live in Canada and we have a socialized medical system; I will be taken care of." In reality, after the devastating news of the first diagnosis, you are going to find yourself bogged down in a medical system that is under-funded, under-staffed and regionally centred in large urban areas. You will find yourself sitting at a computer researching the best options for your child while waiting for answers from your GP who is too busy/tired/unavailable/inexperienced in your child's disease and whose time is spread so thin that you might feel forgotten even though the situation is life-threatening.

You are now on the journey known as advocacy. It is said that parents are the best advocates for their children's health, as they know their children the best. Shouldn't our doctors know our children's state of health better than us? Why are we expected to discover our children's medical problems before being diagnosed by our doctors? Why do we have to get a referral to see a pediatrician – shouldn't they be our children's front-line doctors in the first place? Why has the diagnosis taken so long, using so many doctors?

Here are a few tools to help you on your path:

Do your research

Documentation and communication has never been easier and more available than with the Internet. It's true that there is a lot of questionable information online but there is also extremely timely, cutting-edge and relevant medical information available to the masses. Some of this information has to be paid for, such as medical publications of cited studies, but we no longer have to use our doctors as the only source of medical information. We now have the ability to become highly knowledgeable and effective in the treatment and care of our children.

Doctor's information

Take the time to ask your doctor for all documentation regarding your child's illness. Question what you are told and ask for evidence. This is not the time to follow blindly. "Buyer beware" also applies to medical services being supplied to us even though the system is socialized. You deserve the best care for your child. Ask your doctor what choices in care are available to you.

Find support groups

The Internet is the fastest way to reach out to others who have been through what you are going through. Reach out by joining online chat groups. There is power in numbers. Find mentors through parents of children with your child's illness. Often these parents will have done much of the homework before you and can cut your learning curve in half. You can also reach out to doctors all over the world who are experts in the field of your child's illness and ask them for information to give to your doctor.

Put choices in writing

If you have to convince someone in the medical system that your option of care is more feasible and in line with your philosophy, then put it in writing, along with the evidence backing up your argument. There is nothing more powerful than the written word. Before putting anything in writing, make sure you are respectful, knowledgeable, organized and formal. The whole point is to convince your doctors that there is a better way to do things and that you want to work as a team in the best interest of your child.

What does your doctor believe?

You and your doctor have to be on the same page. Ask your doctor what their belief systems are in this case. Ask them what they would do for their child if they had what your child has. What would they like to see as the outcome of their medical intervention? You have to work as a team with your doctors when you have a catastrophically sick child, and if you don't have the same vision for your child's treatment and its outcome, then you have to look elsewhere.

Media and government

Sometimes the system fails. It will seem as if you are sitting in a small room with only three people in it, screaming at the top of your lungs, yet no one hears you. When all else fails and you have used every politically correct diplomatic form of communication at your disposal, you might have to ramp up the pressure to get what you need. You should contact your local MLA and I would strongly suggest using the media, which is a champion of human rights causes.

Though our medical system often seems adversarial, when you are depending on it in your greatest time of need, you must strive to find common ground and work as a team to deliver the best care possible for your child.

Brad Fisher is the full-time care-giver to his 23-month-old terminally ill daughter, Shira, who suffers from spinal muscular atrophy Type 1. Brad lives in Victoria with Shira, his wife, Maxine, and their four-year-old son, Samuel. Brad can be reached at [email protected].

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