Posted by JULIE – Van and I are here today to talk to you about our patient experience over the last 10 years within the IWK. More specifically, about Van’s back surgery in 2016 and my volunteer work with the Family Leadership Council.
But first I promised my aspiring lawyer-son that if he came today, he would have a platform to speak. Sometimes this results in diatribes about sports teams and primarily the Ottawa Senators, but he has assured me, through a series of negotiated speaking points, that he will stick to the script…Van, the floor is yours…temporarily.
VAN – Hi My name is Van Bernard and I just turned 11 years old. When I was 10 months old, I was diagnosed with a condition called Spinal Muscular Atrophy Type 2 which means that my muscles don’t work like everyone else. Its pretty rare and only 4 kids in Nova Scotia have it.
Because my muscles aren’t strong, I have trouble clearing my coughs and a simple cold usually turns into pneumonia and a trip to the Emergency department and then usually a long stay on PMU. And that is why my mom is always telling me to wash and sanitize my hands and eat my vitamins! Like ALL THE TIME…
I also have scoliosis and had a huge surgery when I was 9 to put rods in my back. I may not be a man of steel, but I am a man of TITANIUM…Which Dr El-Hawary tells me is better than steel for infection purposes.
I may not be a man of steel, but I am a man of TITANIUM…Which Dr El-Hawary tells me is better than steel for infection purposes.
JULIE – so, shortly after diagnosis in 2008, we knew that scoliosis was a distinct possibility for Van and were terrified of what this meant. We were assured that we wouldn’t have to worry about it for years to come. But those years passed quickly and gradually Van’s scoliosis became worse causing him to be bent over so far to the left side that his spine was compressing his organs and his left lung which began to affect his breathing.
When it came time to discuss surgery options, I did what most parents would do in the digital age, a ton of internet research prior to meeting our orthopaedic surgeon. What I discovered is that there was a new type of scoliosis surgery being performed (with great success) where respiratory compromised children did not have to undergo surgery every 6 months to have the traditional rods manually extended in order to accommodate their growth.
Given Van’s (Spinal Muscular Atrophy) or SMA, low muscle tone and history of lung complications, this new type of rod surgery seemed ideal. What I had not really appreciated is that this type of surgery is not for everyone and there was a chance it was not appropriate in our case. Luckily Van did meet all the criteria required for this new surgery.
Thankfully, Dr. El-Hawary not only knew all about these new rods, he was one of only a handful of Doctors performing this surgery in North America and Van was actually one of the first patients in Canada to receive this innovative technology called, “Magnetic Controlled Growth Rods”, or MAGEC rods right here at the IWK. Van’s MAGEC rods can be lengthened in clinic using a large magnet on the surface of his skin. It takes about 2 minutes to extend Van a couple of millimetres and no surgery required.
I use Vans surgery as a prime example of how patient/family collaboration was at the forefront of our care. For example, prior to surgery, Dr. El-Hawary and his team answered my millions of questions and even communicated via email to the questions I forgot to ask during consultation. I brought in copies of SMA protocols written by SMA experts in the States and various journal articles outlining everything from the importance of nutrition immediately after surgery to what kind of anaesthetic should be used. I may have gone a little overboard with information but it was welcomed by all doctors involved in Van’s care.
This collaborative process helped Van’s recovery and we felt very comfortable and confident in the team’s abilities. Most importantly the doctors and nurses included Van in all of the discussions and make sure that Van is as comfortable as possible during his monthly lengthenings. For this, we are very blessed and thankful for the knowledge, skill and sensitivity this team has always provided.
Most importantly the doctors and nurses included Van in all of the discussions and make sure that Van is as comfortable as possible during his monthly lengthenings.
During one of our frequent stays on PMU, a Doctor asked if we would be open to educating first year medical students on Spinal Muscular Atrophy – I jumped at the chance to educate future doctors on a rare condition they otherwise may never encounter in their medical career, and started right into a dissertation (poor kids) with a few interjections from Van of course about his cough machine AKA…
VAN – inexsuffilator.
JULIE -When I finished, the Doctor asked me if I knew about the Family Leadership Council (or FLC) and thought that it may be something I would be interested in.
I have to admit, I was not familiar with this committee but when I made the phone call to investigate further, I knew it was definitely something that I wanted to be part of. Knowing that I could make a difference in not only Van’s health care but the care of others – was, and is very motivational for me.
Knowing that I could make a difference in not only Van’s health care but the care of others – was, and is very motivational for me.
In September of 2017, I attended my first meeting which was both extremely rewarding and enlightening. My FLC involvement, I have to admit, is mostly self serving. I’m at my happiest when I can help others and with ten years of navigating the health care system, ten years of medical appointments and discussions with nurses and doctors we have learned a few things along the way. Haven’t we Van ? These experiences are important for me to share – so I can help to improve experiences for others.
One of the most important aspects I admire about the FLC is not only the amazing people I have met but is the REAL commitment the IWK has to patient family care. Many issues that have been discussed in our monthly meetings have actually been implemented. For example, the patient/family input into the newly design NICU, topics such as; streamlining patient appointment letters have been started and I have even seen improvements in Way Finding – with new signage in the Xray department.
Some of these changes may seem minor but even the smallest of changes improve the very real experiences by IWK families and knowing that I may have contributed a small part of making someone’s day a little easier provides me with an immense sense of satisfaction.
These experiences are important for me to share – so I can help to improve experiences for others.
Being asked to participate as a patient family partner in Lean events and various research projects, allows me to have a voice and to be actively engaged in helping to mould the health care system, a system that keeps my son and so many children healthy. I feel that my contributions to group activities along side medical professionals helps to improve the overall patient experience and care.
In my opinion, patient/family centred care is vitally important for our family. When we come into the IWK, usually the Emergency Department, my son is at his worst. I am stressed and feeling helpless and dependent on quality health care. Being able to have my voice heard and acknowledged has empowered us where we feel that we have an active role in his treatment.
As Van said during our family feature for the IWK Telethon:
“ The IWK means everything to me because when I’m super sick they always take care of me”
His care, and the care of other kids, requires a collaborative, proactive healthcare approach that includes patient and family-centred care.
“ The IWK means everything to me because when I’m super sick they always take care of me”