Improving the Life of Children

1. Improving the Life of Children Living with Chronic Pain

2. Who are we? • Sandy Smeenk • ILC Foundation Executive Director • Mercedes Rodriguez • Canadian Certified Physician Assistant- Primary Care • Kristy Klawitter • Canadian Association of Physician Assistants

3. The ILC Medical Board of Advisors • Dr. Anna Banerji – Pediatrician, Recipient of Order of Ontario • Dr. Norm Buckley, Chair – McMaster Professor Anesthesiology • Mr. Callum Cowan –Hon.BSc. McMaster, Doctor of Naturopathic Medicine • Dr. Bruce Dick – Psychologist – University of Alberta • Dr. Allen Finley – IWK, Halifax • Dr. Christine LaMontagne – Anesthesiology, CHEO • Ms. Christina Pridmore – BSc.Kin., Private practice, Oakville • Dr. Kristianna Martiniuk – Family Physician, Oakville • Ms. Mercedes Rodriguez – Canadian Certified Physician Assistant, CAPA • Dr. Stephane Treyvaud – Psychiatry, Oakville

4. What is in place today?

5. A VISION OF POSSIBILITIES QUEBEC 21-Day+ Intensive Wellness Program Existing Out-patient Pain Program International ILC Peer Support Chapters EAST COAST WEST COAST Opportunity: Clinical Practice to/from Clinical Research to/from Bench Research 21-Day+ Intensive Wellness Program Existing Out-patient Pain Program 21-Day+ Intensive Wellness Program Existing Out-patient Pain Program ILC Peer Support Chapters ILC Peer Support Chapters McMaster – Pilot International 21-Day+ Intensive Wellness Program Existing Out-patient Pain Program ILC Peer Support Chapters = Community Hospitals, Allied Health Professionals, Family Physicians, Psychiatry, Psychology, CCAC, Schools, National Support Group Chapters

6. Call to Action • Validate the pain experience in children • Provide resources for One-on-One & Peer-to-Peer support • Help fund ILC Charitable Program

7. What is Chronic Pain? • “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, and lasts beyond the normal time for healing.” • From symptom to disease. • “Chronic pain in children is the result of a dynamic integration of biological processes, psychological factors, and sociocultural context considered within a developmental trajectory.”

8. Chronic pain in children? • Isn’t that a problem for the adult population?

9. Relevance • "Our best estimates suggest that 5-8% of Canadian children and teenagers suffer severe chronic pain – pain that interferes with school, friendships, and activities, and causes suffering to children and their families. Failure to manage this pain can impact the rest of a child's life and society as a whole.” • The International Association of the Study of Pain (IASP) & Canadian Pain Society • Affects up to 25% of children, 8% of total have “intense and frequent pain” (Netherlands) • Perquin et al. Pain 2000; 87: 51-8 • Recurrent pain in 57%; chronic pain in 6% (Ontario) • van Dijk et al. Pain Res Manage 2006; 11(4): 234-240 • Stanford et al. Pain 2008; 138(1): 11-21 • 12-17 year olds: 2% boys, 6% girls – Statistics Canada 2010

10. Chronic Pain in Children • Interferes with school, parents’ employment: direct and indirect economic impact • Li & Balint. Adv Pediatr 2000;47:117-60 • May predispose to adult chronic pain and disability • Walker et al. J Ped Psych 1995; 20: 233-245 • Campo et al. Amer GI Assoc, 1999 • May miss school, withdraw from social activities, and are at risk of developing internalizing symptoms in response to their pain • S. King et al. PAIN 152 (2011) 2729-2738

11. Why is children’s pain ignored? • Isn’t there a basic parental need to protect child from suffering? Parents expect pain to be relieved Forgeron et al. J Pain Sympt Manage 2006; 31(5): 440-8 Parents’greatest distress: failing to protect their child from pain Tiedeman: J Ped Nurs 1997; 12: 110-9 Melnyk: J Ped Nurs 2000; 15: 4-13 • Parents’ assumption: everything possible is done e.g. Anand’s neonatal surgery studies Lancet 1987; 1(8527): 243-8

12. Good reasons children have for NOT telling you about their pain… • “I don’t want a needle” • “If I say yes, you’ll hurt me more” • “This is my life now” • “I want to be good” • “Big boys don’t cry” • “I want to go home” • “I don’t want to worry my parents” • “Something must be really wrong

13. As a health care provider… • “If we know that pain and suffering can be alleviated and we do nothing about it, we ourselves are tormentors” Primo Levi • Validate pain • Provide reassurance • Many treatment options available (NEED FOR CME) • Need to find the right treatment for the right patient

14. Patient Perspective • My Diagnosis • What Does This Mean? • My Pain Associated With the Disease • Effects of Chronic Pain • A New Neurologist, An Unfortunate Experience

15. Patient Perspective • Going Back: The Importance of Quality Care • What Patients Need • The Power of Hope • Last Remarks • Thank You for Listening to My Story

16. “Let’s get out of here before we lose a child on our watch, wasting our time…” Patient living with severe Ehlers Danlos Syndrome/Dysautonomia: “Maybe your pain is from being in bed for so long, let’s try and sit you up and get you on a routine of physiotherapy…don’t you want to finish school?” (Patient later diagnosed in the United States with fractured vertebrae!) “I am embarrassed to say I am part of the Canadian medical profession to be denied support from within my own peer group. Until now, I did not have an appreciation for what patients go through living with chronic pain.”

17. Unthinkable things doctors have said: • “Your daughter, likely, has an eating disorder” • “The pain is in her head” • “He is making his body dislocate” • Don’t worry about finishing high school, you will qualify for disability benefits.”

18. Unthinkable things doctors have said: “She is likely spoiled, like most teens these days that become so emotional. We should try psych meds” Medical notes on patient file: “Genetic request denied.” BLOCKED based on medical bias. 13 Year-old diagnosed with Fibromyalgia: “There is nothing we can do for you. You will have to learn to live with the pain and exercise.” “Giving in to her every request is doing more harm than good”

19. VISION All children and adolescents (up to age 29) living with chronic pain disease will have the best opportunity to reach their potential through a comprehensive, fully integrated peer support network and program that fosters education and knowledge transfer.

20. Q & A