Advocacy Through Dialogue
This article was published in Island Parent Magazine June Edition 2007 Feature Article and The Jewish Indpenedent

By 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 as the big question, "what is life all about?" takes precedence in your life.



You will find little help where you most expect it from and some help where you least expect it from. Angels in many disguises 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." 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. All of a sudden you will find yourself sitting at a computer researching for the best options for your child while waiting for answers from your GP who is too busy/tired/unavailable/in experienced 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 children¹s health as they know their children the best. Shouldn¹t our doctors know our children¹s 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?- shouldn¹t they be our children¹s front line doctors in the first place? Why has the diagnosis taken so long using so many doctors?



We go before our doctors like Dorothy, the Scarecrow, Tin Man and Lion went before the great and all powerful Wizard of Oz. Unlike the four characters in the movie we need the help of highly trained medical professionals to deliver the best possible care to our children so that they can experience the highest and best quality of life. But in these times we look towards those we think are supposed to have more experience with our childs condition naively forgetting that all the people in the medical profession and social work areas are only human. These professionals can suffer from the same maladies as the rest of the general population including: overwork, a stressful divorce, mental illness, addiction, abuse, depression, bankruptcy, skewed judgment, and most importantly a belief system that is different than your own and on and on; yet we gladly hand over our children to these individuals and follow their advice without questioning their credentials, work history or getting a second and third opinion on the treatment prescribed. We give more thought to our family's security when hiring a nanny, cleaning person or handyperson; we are talking risk management!

In Dr. Jerome Groopman, M.D.'s (Professor of Medicine at Harvard Medical School, Chief of Experimental Medicine at Beth Israel Deaconess Medical Center, and one of the world's leading researchers in cancer and AIDS) new book "How Doctors Think" he states "Usually doctors are right, but conservatively about 15 percent of all people are misdiagnosed. Some experts think it's as high as 20 to 25 percent and in half of those cases, there is serious injury or even death to the patient." According to Groopman, to be an effective consumer of medical services, patients need to realize there are two categories of physician thinking. "A physician's emotions can colour his or her thinking and actions," he said. "Patients need to know how to pick up on negative and positive feelings." Dr. Groopman also states," if a patient genuinely feels the symptom is different from anything they've ever felt, to red flag it - ask the doctor to take it seriously, not to stereotype and make an attribution error. If you think a doctor is not listening, search out a second or third opinion."

What is the definition of advocacy? The Oxford Dictionary describes advocacy as, "A person who pleads a case on someone else¹s behalf - ORIGIN Latin: advocare (A call (to one¹s aid)." We are now speaking on behalf of our children. We are now researching our child's illness to our fullest extent. We now have more scientific evidence in hand than our doctor, social worker, occupational therapist, physio therapist. We now find out that what the system wants to do for our child is obsolete, antiquated, not what we want and that we want to pursue a different avenue of care that we believe (from our research) will have a more positive impact on our child's quality of life. If your doctors opinion is in contrast to your researched scientific documentation ask your doctor for cited information or similar evidence you can read, discuss the research with them and together make logical decisions together.

I have created a few simple steps that will make you an affective advocate for your child.

1) Research.

Documentation and communication has never been easier and more available than with the internet. If you don¹t have a computer there are many places you can use them from internet cafes, libraries, friends etc. It is true that there is a lot of information which is questionable on the internet 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, for example medical publications of cited studies. 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.

2) Doctors Information.

Ask to see Cited Studies, Clinical Evidence, Empirical Studies, Peer Reviewed Studies and ask for their personal opinions. 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. Speak to an expert! Caveat Emptor -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.

3) Support Groups.

The internet is the fastest way to reach out to others that have been through what you are going through. Reach out by joining online chat groups. There is power in numbers. There are families out there that have been through what you are going through and will have great success advocating for their children. 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, pass along relevant cited medical information etc. You can also reach out to doctors all over the world that are experts in the field of your child's illness and ask them for information to give to your doctor.

4) Put It 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.

5) What does your medical professional 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 don¹t have the same vision for your child's treatment and its outcome then you have to find someone or go somewhere where you can get the correct care delivered to your child.

6) Media and Government

Sometimes the system fails. It will seem as if you are sitting in a small room with only 3 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 MLA in your local government and the people you voted for. I would strongly suggest using the media. The media is a champion of human rights causes. Call your local radio and television stations.



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. In summary 1) research and back up what you are asking for with qualified information 2) correspond in a respectful, logical, written format 3) if your child is not getting their needs met by your medical professional find another one that can deliver the appropriate care and 4) if all else fails go to government and the media. I would like to end this piece with a quote I heard on the radio from one of Canada¹s leading child advocates June Callwood,"Help should be defined by those that need it, not by those who deliver it."



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 his wife Maxine, his 4 year old son Samuel and his daughter Shira. Brad can be reached at asonginthisworld@gmail.com

Little Miss Boops Runs The Royal Victoria Half Marathon

This article was published in Island Parent http://www.islandparent.com/ and The Running Room Magazine Jan 2007 Section 2 http://www.runningroom.com/

By Brad Fisher

When you are looking after a child with a terminal illness life can often be gloomy, depressing and tiring. Around mid August last summer I was up all night with my daughter, which was not unusual for her condition as she suffers from Spinal Muscular Atrophy Type 1. SMA is a terminal genetic disorder (similar to Lou Gehrig's disease and Muscular Dystrophy) where the patient has a gene deletion which inhibits muscle growth and maintenance and the muscles atrophy. 1 in 40 people carry the gene and 1 in 5000 babies are born with SMA. Though my daughter is physically weak she is intelligent and developing like any other 17 month old; except that she has a terminal physical disability. As dawn broke I opened my lap top and entered my SMA support chat group online to see what was happening. Many people on the chat live back East and are 3 hours ahead. One of the members posted a story about Rick and Dick Hoyt the father and son Iron Man Team. I couldn't believe what I saw. Here was a 65 year old man competing in the Hawaiian Iron Man pulling his physically challenged 43 year old son in a dingy during the swim section and then biking and running with him with a modified bike and wheel chair. Not only were they completing this grueling race, they were serious competitors beating out men in their 20's (Dick and Rick's story is inspirational and can be found on their web site at www.teamhoyt.com). I had been looking to do something out of the ordinary with my daughter but I really wasn't sure what I could do with her. When the common cold can be potentially fatal for your child it limits doing anything in a public environment like swimming, walking in a mall etc.

I thought to myself, " yeah, running, I'm going to run with Shira in Victoria's Half Marathon and raise money for SMA Support Inc." Well, I didn't think about the fact that I hadn't really done anything physical for the last year since Shira's diagnosis let alone the last 4 years since my wife and I started a family. Shira is also very fragile. Shira has trouble swallowing, managing her secretions, needs constant suctioning with a special devise, she must lay flat on her back, and has a host of medical equipment which must be with her at all times to keep her stable as well as for emergency purposes.

The same day I watched the Hoyt video I loaded Shira into her pram like wheel chair with all of her equipment stowed underneath and took her out for a run. We started by just running down the block, then through Mt. Doug Park and then another mile and a half up the road down Lochside Trail and back home. Our first run was a 5 miler and Shira was beaming at the end of it. Not only was running a wonderful break from the monotony and stress of living with a terminal illness but it was great therapy for Shira; because Shira doesn't move the constant jostling and fresh air was really good respiratory therapy for her.

When we arrived home I devised a run-walk routine of run 3 minutes and walk one minute with a minimum of 5 mile runs. I would run 3 to 4 times a week and on my off days we would power walk up Mt. Doug and through the forest for a minimum of an hour. 2 weeks before the race Shira and I ran 14 miles in 3 and a half hours. We took the run at a leisurely pace stopping to visit with dogs, cats, chickens, pigs and horses on our way out and back along Lochside Trail. By race day we were ready.

Race day was packed with excitement for us. The morning of the race our home was invaded by yellow jackets while loading the car, none of the inverters worked for the emergency equipment in the car and the rain would not stop falling. During the race Shira felt so relaxed and comfortable that she slept for 45 minutes. Even though we started 5 minutes after the race started and had to walk for the first 10 minutes Shira and I finished with a respectable time of 2:22 tag time. I could see the excitement, joy and sense of accomplishment on Shira's face at the end of the race. My daughter and her terminal illness has taught me once again that there is a positive side to every situation even terminal illness. Shira and I raised over $10,000 dollars for SMA Support Inc. and more than that we have found an event that Shira can take part in with her dad. I would just like to finish with a quote from Rick Hoyt the physically challenged Iron Man competitor, "CAN."

Brad Fisher lives in Victoria, is married, a Realtor by trade and has two children Samuel 4 and Shira 19 months.