Chronic pain in children

Transcription

1 Improving the Life of Children Living with Chronic Pain Chronic pain in children 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); pain reports common in Canadian data van Dijk et al. Pain Res Manage 2006; 11(4): Stanford et al. Pain 2008; 138(1): year olds: 2% boys, 6% girls Statistics Canada 2010 Interferes with school, parents employment: direct and indirect economic impact May predispose to adult chronic pain and disability Li & Balint. Adv Pediatr 2000;47: Walker et al. J Ped Psych 1995; 20: Campo et al. Amer GI Assoc, 1999

2 It s in our own backyard "Our best estimates suggest that 5-8% of Canadian children and teenagers suffer severe chronic pain. Based on the population of children within the Halton Region (162,705) and current estimates (5-8%) chronic pain in children, approximately 8,000 children suffer with chronic pain in Halton. Which means in an average Halton classroom of 30 kids at least 1 child in every classroom is dealing with a chronic pain issue. Chronic pain that interferes with school, friendships, activities & social behaviour. Chronic pain that causes not only suffering to the child but also to their families coping with doctors, hospitals, special care needs, work and family life. Failure to manage this pain can impact the entirety of a child's life and their ability to contribute to society and community. What is in place today

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4 The ChildKind International Initiative for Prevention and Management of Pain in Children Article 19 UN Convention on Rights of the Child 1. States Parties shall take all appropriate legislative, administrative, social and educational measures to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual abuse, while in the care of parent(s), legal guardian(s) or any other person who has the care of the child. Article States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services. 2. States Parties shall pursue full implementation of this right and, in particular, shall take appropriate measures: (b) To ensure the provision of necessary medical assistance and health care to all children

5 World Medical Association Ottawa Declaration on the Rights of the Child to Health Care, October 1998 V. to secure for every child the provision of adequate medical assistance and health care, with emphasis on primary health care, pertinent psychiatric care for those children with such needs, pain management and care relevant to the special needs of disabled children; 28. Every effort should be made to prevent, or if that is not possible to minimize, pain and/or suffering, and to mitigate physical or emotional stress in the child patient. 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): Parents greatest distress: failing to protect their child from pain. Tiedeman: J Ped Nurs 1997; 12: 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

6 At Issue The ILC Foundation has built a bridge of communication between the different facets of health care available to Canadians. With a vision of creating a facility to treat children with chronic pain in a comprehensive, cohesive and multi-disciplinary manner, the ILC Foundation is breaking new ground within our medical system. It is a support system and centre that is long overdue. Christina Pridmore - Kinesiology I have spent 100% of my charitable time outside of Canada (such as Haiti) because nothing has resonated with me either personally or professionally, until now. Dr. Sonny Kohli ICU Oakville Trafalgar Hospital The results of this initiative will go far beyond what is currently being proposed and that it has the potential to result in the development of regional centers of excellence across Canada that will fill the huge gap in clinical care that currently exists. These centers, once developed, will have the ability to become models of best practice for the rest of the world. Dr. Bruce Dick University of Alberta 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

7 Samples of Case Profiles Charlie Smith Age 22, suffering with unaddressed chronic pain, in and out of hospital Erika Crawford Age 16 Diagnosed with Ehlers Danlos Syndrome, suffering with chronic pain, no pain medication, Geneticist advised family go to States to see specialist as none exist in Canada for EDs, not in school. Brooklyn Mills ILC Ambassador of Hope Deplorable health care over four years. Recent care at Oakville Trafalgar Hospital was outstanding. Ann-Marie Zylstra and her 3 young children suffering with chronic pain Vanessa Wells and 2 young children suffering with chronic pain Knowledge Transfer Pilot

8 A VISION OF POSSIBILITIES EAST COAST 21-Day+ Intensive Wellness Program Clinical Practice & Peer Support Day Program 21-Day+ Intensive Wellness QUEBEC Clinical Practice & Peer Support Day Program Knowledge Program Transfer Training Opportunities: Bench Research to/from Clinical Research to/from Clinical Practice WEST COAST 21-Day+ Intensive Wellness Program Clinical Practice & Peer Support Day Program International International 21-Day+ Intensive Wellness Program ONTARIO Clinical Practice & Peer Support Day Program KNOWLEDGE TRANSFER = Community Hospitals, Allied Health Professionals, Family Physicians, Psychiatry, Psychology, CCAC, Schools, National Support Group Chapters Who is supporting us Dr. Anna Banerji Pediatrician, University of Toronto - Recipient of Order of Ontario Dr. Norm Buckley Medical Director, Pain Management Centre, McMaster Hospital Dr. Bruce Dick Clinical and Child Psychologist University of Alberta Dr. Allen Finley Medical Director of Pediatric Pain Management - IWK, Halifax Dr. Christine LaMontagne Director of Chronic Pain Services,CHEO Christina Pridmore Kinesiology, Private practice, Oakville Dr. Stephane Treyvaud Psychiatry, Oakville Dr. Kristianna Martiniuk Family Physician, Oakville Tammy Stadt Patient Advocacy, EDS, Midland,

9 Local Collaborations & Associations Where we are at: ILC adopts pediatric chronic pain as permanent charitable focus with pediatric defined as up to age 29 to support transition of care into adult care programs. October 1, 2011 Hosted Workshop to organize and vet essential components of care for Canada s 1st 21-Day+ Program modelled after Mayo and Bath, England programs. McMaster Children s Hospital accepts responsibility to Pilot of 21-Day+ Program Award of Ontario Trillium Foundation Grant Achievement of Charitable Status Donation of $5, from Pinball Clemons Foundation Board of Direction representation on National scale National comprehensive programs of peer support organized fostering Knowledge Transfer

10 Continued Halton Region Pediatric Chronic Pain Peer Support Program developed as model of excellence for other Regions across the country to follow as ILC Chapters Development of Difficult to Diagnose Disease Program for Ehlers Danlos Syndrome+ with Pilot Steering Committee being established to include multidisciplinary team approach to care Development of the Canadian Ehlers Danlos Syndrome Neurosurgery Training Program with world renown expert Dr. Fraser Henderson, Bethesda, Maryland. Steering Committee for Resources for Educators: Dr. in Halifax, Youth & Child professional in London, Ontario and Halton Region schools Endowment campaign development Fundraising at grassroots: Through community Support Group Chapters Your Town s Largest Rock n Roll Party as template to connect for Kids in Pain! Building teams and providing HOPE November 6 12, 2012 National Pain Awareness Week Kick off to Halton Region Pediatric Chronic Pain Support Group

11 What is needed? Help identify Volunteer Committee members Connect us with Media Support for Awareness of Programs Education on the invisibilities of chronic pain in Schools Involvement with New Oakville Trafalgar Hospital in affiliation with McMaster Children s Hospital & 21+ Day Program PR Campaign and Interest by Halton to profile Programs as a Model of Excellence OUR 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 network and support program that fosters knowledge transfer. g{tç~ çéâ