Shaping Pain Research & Care for Kids Together
Patient partners Carley Ouellette and Katherine Dib, and Dr. Katie Birnie co-authored a scientific paper for Pediatric Pain Letter describing the benefits and challenges of patient engagement from the perspective of patient partners, researchers, and health professionals.
View the letter at http://ppl.childpain.org/issues/v20n3_2018/v20n3_birnie.pdf
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When Dallyne was seven years old, she had her first bladder surgery which was supposed to help with the pain. The medical team sent us home without teaching us how to properly take care of her after the surgery. When we got back home, Dallyne started feeling so much pain again. We didin’t have anyone to turn to. Our small community just didn’t have doctors that could help with her condition.
For one whole year we were going back and forth to Saskatoon. Our family was experiencing so much pain and confusion. The travelling was taking a toll on all of us and her condition was not getting better. She just wasn’t getting the right care.
Things didn't get better until we were able to see a specialist in Calgary. There Dallyne received the best care ever. They taught use everything we needed to know about her condition. They even kept us in the hospital until I felt confident I could give Dallyne the right care at home on my own. Now the pain is so much more manageable because we know what to do. It has improved her quality of life so much and she was finally able to grow into a young woman that she is today.
Being away from major medical centres has affected our family in such a negative way. The health system is just not set up for anyone living outside major urban centres and this has to change. Our children deserve to get the best care.
I am a childhood cancer survivor and I live with many different late effects of cancer treatment. One of the effects is chronic pain. For many years, my doctors did not think my pain was a priority, but eventually, I was referred to a pain clinic.
There, the doctors questioned the validity of my pain and concluded that it was psychosomatic. This means that they thought it was only in my imagination, and that it didn’t need treatment.
Over the years, I took it upon myself to deal with my pain. I use methods like yoga, stretching and hotpacks and I try not to use medication unless it is really necessary.
I wish my doctors had talked to me more about my pain. Communication between patients and doctors is the key to understanding pain. The more doctors ask their patients about pain, the better they will understand pain in future patients.
Doctors should also validate their patient’s pain. This builds a sense of trust between the patient and the doctor. It also makes the patient feel that they are valued and heard. I think my journey with chronic pain could have been a lot different if the pain I was experiencing had been validated by my doctors.
Involving patient partners and patient educators will help doctors better understand what it truly means to live with pain. It will help us understand how we can work together to minimize the impact of chronic pain on the everyday lives of patients.
I have been living with chronic pain for a long time and I’m not sure I remember when it began. It was always there, in the background and I just got used to living with it.
When I was 12 years old, I went for an x-ray because doctors wanted to get a better look at one of my hips. I had to lie on my side for this x-ray and somehow this dislocated my hip. The pain was incredible and it even triggered a seizure right then and there.
For weeks the pain was really bad. I had a really hard time staying still, my eyes would water, and my heart rate would be really high. I was even getting seizures more often than I used to before the x-ray. I tried using many different pain medications but I didn’t like the way they made me feel. Plus none of them made the pain go away completely.
Finally, a doctor suggested that we could try to get rid of the pain by burning the nerve in my hip that was causing the pain. The nerve is burned with radio waves and you don’t have to have a real surgery to do it. My family and I decided to give it a shot.
After this procedure, everything changed. The pain was almost gone and I finally felt like myself. I started eating more, I felt happier and I stopped missing school. Even my seizures become less frequent. I realized how much pain I was in the whole time and how much it affected my life.
The pain is not gone completely, and some days I feel it more than others. But that that procedure improved my quality of life so much, and I wish I could have gotten it sooner.
School is very difficult when you have chronic pain. For me the workload wasn’t the biggest challenge, it was convincing my teachers and principle that I was truly in pain.
I went from barely missing any days in grade 10 to barely getting through half-days in grade 11 and 12. After a couple hours of sitting, I was in excruciating pain. I was in so much pain that I couldn’t concentrate. I’d get up whenever I could. I even brought a comfortable chair to all my classes, but it was not enough to make it through the day.
I remember being called into the principal’s office one day. I felt like I had done something terribly wrong. The principal questioned me and kept saying it didn’t make sense why I couldn’t be at school. She said there’s no difference between being in pain at home and being in pain at school. I left her office crying, as I did many times throughout high school. I tried my best to explain pediatric chronic pain to my school personnel, but at times I was confused myself.
Once I got to University things changed. Students with health conditions were treated so well and this really helped me excel. There is so much that needs to be done in public schools to educate school personnel. Children and youth can’t be responsible for this. We need experts to do that. I believe educating school personnel is the key to improving the lives of children with pain.
I have been living with chronic pain since I was 16 years-old. I live with pain every day because I have a rheumatological condition. When I got my diagnosis, my whole life turned upside down.
I went from being a normal teenager worrying about graduating high school, to worrying how to deal with my pain. I was spending weeks on end at hospitals and so I missed a lot of school and I missed my friends. Luckily, I had an incredible medical team and a very supportive school.
In grade 11 I was introduced to in-hospital teachers at SickKids. They helped me work on my English course at my own pace. Once I went back, my school organized a meeting with my parents and all my teachers so we could come up with a plan. It was great because no one asked me to share the details of my conditions. It helped me maintain my privacy. We came up with a plan that worked for me. I could take exams in separate rooms. They gave me extra time for breaks and I could bring my medications. My teachers were creative and they came up with new ways to test me as I had to miss a lot of class. I started taking online courses and went to summer school so I could get all my university prerequisites. I am so grateful that my school listened to my unique needs.
I am grateful they were willing to come up with a plan that worked for me. Without their support I would not have been able to walk across the graduation stage with my classmates. I would not have had the confidence to go to university and I would not be in medical school today, all while living with chronic pain. I am grateful, but I know lots of kids living with chronic pain struggle to get to school, graduate, and pursue their dreams.
Living in a small First Nations Community in Saskatchewan, it was hard to get the right treatment for my daughter Dallyne. Dallyne always had pain, probably since she was born. We just didn’t know that because she was too young to tell us and the closest specialist was three and a half hours away in Saskatoon.
When Dallyne was seven years old, she had her first bladder surgery which was supposed to help with the pain. The medical team sent us home without teaching us how to properly take care of her after the surgery. When we got back home, Dallyne started feeling so much pain again. We didin’t have anyone to turn to. Our small community just didn’t have doctors that could help with her condition.
For one whole year we were going back and forth to Saskatoon. Our family was experiencing so much pain and confusion. The travelling was taking a toll on all of us and her condition was not getting better. She just wasn’t getting the right care.
Things didn't get better until we were able to see a specialist in Calgary. There Dallyne received the best care ever. They taught use everything we needed to know about her condition. They even kept us in the hospital until I felt confident I could give Dallyne the right care at home on my own. Now the pain is so much more manageable because we know what to do. It has improved her quality of life so much and she was finally able to grow into a young woman that she is today.
Being away from major medical centres has affected our family in such a negative way. The health system is just not set up for anyone living outside major urban centres and this has to change. Our children deserve to get the best care.