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Foundational Plan 2011 – 2018
Executive Summary
The ILC has set a long-term strategic plan to provide a chronic pain care model of excellence that has been endorsed by Canada’s leading pain experts as an outstanding initiative and a critical project. The ILC Foundation has the vision, expertise, and leadership required to successfully complete its care model and thereby dramatically improve the situation of many children who suffer tremendously due to complex pain problems. It is believed that 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 practices for the rest of the world.“ Dr. Bruce Dick, PhD, ILC Independent Trustee[1]
Complex chronic pain problems are being noted across the world as unique medical disorders that require specialty care. The good news is that when chronic pain is appropriately validated and treated, the prognosis for affected children, adolescents and young adults (“CAYA”) can be very positive. As one of the most prevalent and expensive medical disorders that exists in Canada, it is crucial that the ILC develop wellness centers of excellence where outstanding staff may come together to provide the best treatments available to CAYA who are afflicted with these complex chronic pain problems.
The ILC Foundation (“ILC”) has recognized the importance of chronic pain in children, adolescents, young adults and families, and the devastating effects that it can have on families. These negative effects are seen in the form of physical disability, a high rate of school absences, significant sleep disruption, distress and other psychological difficulties, tremendous strain on families, high financial costs to families and the health care system and, perhaps most importantly, a very poor quality of life in these children.
20% of Canadians live with chronic pain – 1 in 5 adults and 2.2 in 44 children and youth. The Canadian cancer rate is 1 in 44.
This business plan outlines a strategic plan that includes a 21- day chronic pain management program and long-term care model. Based on cohorts of 16 patients per month at $10,500 each, the program generates $1.8 million in revenue annually, $1.4 million in expenses and $400,000 in foundational growth to support template-able centers provincially. This projection is based on support from provincial ministry of Health and Long Term Care and the Ministry of Child and Youth Services with the first center based in Oakville, Ontario. Once validated, the model can be expanded across Ontario in 10 or more centers, thereby providing care to an otherwise under-serviced at risk population.
The ILC is supported by its volunteer independent skills based board of directors; has a working medical advisory board (MAB) that includes Canada’s most recognized pain experts; has completed and vetted its 20-year long term strategic business plan and is on target; has organized, researched, work-shopped and vetted Canada’s first 21-Day+ Chronic Pain Care Program modelled after the Bath, England and the Mayo Clinic programs, as a strategy to bridge gaps in care by fostering education and knowledge transfer through program delivery through medical schools; established a pilot peer and one-on-one support program to help families navigate the very challenging health care system and continues to deliver its support with comprehensive programs; developed and funded the Difficult to Diagnose Chronic Pain Diseases Program as a pilot initiative to bridge the identified gap in best practices for the diagnoses and treatment of a broad group of chronic pain diseases, which currently do not exist; has successfully secured university and health network specialists to continue its work through the ILC annual Canadian Medical Education accredited difficult to diagnose chronic pain diseases: Ehlers-Danlos Syndrome conference; raised its first funds; is part of a leadership team for the development of a national pain strategy; and, most importantly, improved the lives of well over 2000 CAYA and families.
The ILC charitable programs were inspired by the Mills family who had a teenage child that suffered for years with under serviced and misdiagnosed chronic pain, on the premise that no other child or family should suffer as they had. The ILC’s Ambassador of Hope, Brooklyn Mills attended the Mayo Clinic 21-day program on the referral of Dr. Anna Banerji, MD, Pediatrician and recipient of the Order of Ontario as a matter of life or death. Despite the referral, the Ontario Ministry of Health denied financial support based on medical specialist notes on file that reflected “…a troubled teen… likely with an eating disorder…”with requests for genetic consults denied. Therefore, the family attended the Mayo 21 day program at their own expense (USD $25,000).
The Mayo program helped to change the course of Brooklyn’s life, bringing her back from a palliative state of bed-based home health care, without any support from the health care system of Ontario to a state of coping with chronic pain and Ehlers Danlos Syndrome (EDS). Consequently, the ILC was founded and have determined that adolescents and young adults should have the benefit of such a program in Canada at a center of excellence for patient care; and, that interns and allied health care professionals should be provided clinical and academic learning opportunities through placements at the center of excellence, linked to university health networks, thereby teaching the invisibilities of chronic pain in the clinical setting and help to debunk the societal view of chronic pain and chronic illness.
Reflective of the Mills family experiences, complex chronic pain in CAYA is today largely treated as a psychological disorder. Countless families’ experience up to 30 specialist appointments; referrals to sleep clinics and eating disorder clinics, with care dismissed and at times denied, leaving families to suffer in silence. Prior to the ILC, at the community level, CAYA did not have access to a peer support network to help replace feelings of isolation and fear with friendships and hope. Prior to the ILC, families did not have access to one-on-one support to help them navigate the challenging health care system.
Incorporated as the first registered charity in Canada focused to improve the lives of children, adolescents, young adults (“CAYA”) and families that suffer with complex chronic pain diseases, achieving charitable status as a foundation in April 2012, and receiving its first funding through the Ontario Trillium Foundation in October 2012, we are positioned well to help bridge the gaps that exist for this at risk population.
Due Diligence
Prior to organizing our charitable programs, we identified and examined gaps in each area of care, to determine where we could be of assistance. This included gaining an appreciation of the magnitude of challenges CAYA and families face; understanding what is done well within health care and learning about the identified societal and systemic gaps that bring high cost to health care; investigating and evaluating all community based support programs to understand and appreciate that enormous gaps exist for “CAYA” and families who suffer with chronic pain diseases. The results of our research led to verification of the following facts:
· Children and teens chronic pain diseases often go undiagnosed and/or misdiagnosed and are under serviced;
· There are no sustainable programs that exist for children and their families;
· Awareness and education peer support networks did not exist;
· One-on-one support for this at risk population did not exist;
· A national web-based resource guide did not exist to help families navigate care for their child;
· Rehabilitation programs at recognized care centers exist for children that are born with physical disability or cognitive impairment, but services are not provided for children that suffer with chronic pain diseases. For example, the Ontario Association of Children Rehabilitation Services (OACRS) is not inclusionary of this patient population;
· A long-term strategy of how to diagnose, treat and care for children suffering from chronic pain that included transition to adult care did not exist;
· Chronic pain evidence based guidelines for diagnostic and treatment for each discipline of medicine does not exist;
· Canadian children, teens and young adults who suffer with severe and debilitating chronic pain did not have access to the Mayo or Bath 21-day chronic pain management programs with support from MOH;
· Rarely do children have access to an interdisciplinary medical “round table,” a team approach that has a higher success rate of accurate diagnoses and the establishment of a proactive rehabilitation and treatment plans. In its place, given the current “healthcare system,” these patients see up to 30 specialists without a collaborative or a cohesive diagnoses and treatment plan.
· Best care practices for the diagnosis, treatment and care of chronic pain illness did not exist as a guide to family physicians or for specialists in each discipline of medicine for children suffering from chronic pain;
· Canada does not have a 21-Day chronic pain management program and center of excellence for “CAYA” who suffer tremendously with chronic pain. Today, precedent has been set with the MOH providing approval to attend the Mayo Clinic or Cleveland Center.
· Potential funders from industry, professional associations and individuals indicated support would not be provided if ILC programs included the adult population, but if we set programs for children and youth we could count on their support.
· Canada does not have a national pain strategy despite magnitude of problem.
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[1] http://www.theilcfoundation.org/wp-content/uploads/2012/04/ILC-Foundation-support-letter-BDick-Aug-2011.pdf