Advocate Now
EDS Canada Foundation Publications & Position Statements
The ILC Foundation and EDS Canada Foundation have created the following publications and position statements to advocate for EDS patients:
- Medical Assistance in Dying (MAiD) Position Statement
- Neurosurgical Need Position Statement
- Snapshot of Neurosurgical Need of Ehlers Danlos Syndromes and Hypermobility Spectrum Disorders Patients in Ontario February 2022
- Letter to Ministry of Health advocating for neurosurgical healthcare May 2022
- Engaging the Canadian System
- Social Network Impact On Chronic Pain.
- TheILC Foundation VMCL Map 2022
- The Added Value of an EDS and HSD Navigators 2018
- The Disproportionate Effect of Ehlers-Danlos Syndrome on Women
- The ILC Fast Facts 2023
- National Pain Strategy
- UN Committee on the Rights of Persons with Disabilities
Other Valuable Resources:
United Nations Convention on the Rights of Persons with Disabilities
Declaration of Montreal- Pain Management is a Human Right
The following advocacy document was created by EDS patients to advocate for care which we are sharing here to help you in advocating for yourself: Analysis of Patient Submissions, CCI Timeline Ministry Health
Advocate Now
The more patients use a coordinated effort through participation in surveys, petitions, peer support and/or lobbying government officials, the greater probability the ‘collective voice’ can influence those with decision making power.
Your Elected Representative can help:
Write a letter to your Provincial and Federal Representative to let them know your concerns about the challenges to receive pain management that includes having a family doctor that has diagnostic criteria and treatment plans. You can include the following statement/statistics to validate your experience:
“EDS Canada Foundation provides community based support to children and families with complex pain problems and recognize the need for cohesive collaborations among all stakeholders for the development of a National Pain Strategy. The Canadian Pain Society (CPS) report that 2.2 in 44 children and youth and 1 in 5 adults live with chronic pain. Chronic pain in children and families have a negative and devastating effect that are seen in the form of physical disability, a high rate of school absences, missed work, 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. While chronic pain is often considered a symptom of many diseases, most experts now agree that it is a medical entity worthy of discussion as a disease on its own. It therefore deserves the recognition and priority commensurate with the seriousness of this problem.”
Find your Provincial Elected Representative and your Member of Parliament
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland
- Northwest Territories
- Nova Scotia
- Nunavut
- Ontario
- Prince Edward Island
- Quebec
- Saskatchewan
- Yukon
- Members of Parliament
Patient Experience / Patient Relations Department
(AKA: patient complaint department within all hospitals). Use and KEEP using this department. Keep a file of all your communications even if items remain unresolved. When filing a compliant always request due date for their response, and if no response is received that you will continue along the escalation path. *Estimated response / resolution days to months. Remember if the first point of contact in this department has not offered a reasonable resolution feel free to escalate this to the Manager. In the event this step is also not helpful, ask for the escalation path, which is likely a Director, VP ending with the CEO.
Patient Ombudsman
You can call in or use the online complaint form. Recognize that this government body only oversees the administration of healthcare (how the hospital is doing) NOT the clinical judgement of physicians. This office is really about access to care, waitlist times, ongoing communication struggles or ineffective Patient Experience Department processes and the subsequent unresolved issues. *Estimated response / resolution 4-8 months.
1-888-321-0339 | www.patientombudsman.ca
Information and Privacy Commissioners Office
When you need to seek out correction to the medical record / ‘Access/ Correction Complaint Form’. This form is available online at the Information and Privacy Commissioners Website and can be used at any hospital. This is vital to ensuring the physicians / hospitals are accountable to the true facts of your or your child’s health experience including imagining, symptom reporting, requests for referral / diagnostics. Efforts to keep a true / accurate record will be needed if you submit a formal complaint down the road in any system. This office can also assist with any concerns of your private health information (collection, use or disclosure). Information and Privacy Commissioner of Ontario
1-800-387-0073 | [email protected]
Use the College of Physicians and Surgeons (CoPS*)
You can file a formal complaint (form is on the website). Being a physician in the province is a licenced profession and doctors have high standards to maintain and if someone is in breach of these professional obligations they can receive a verbal/written reprimand or even lose their licence. If in doubt use the website to review their professional guidelines. Be aware that you will have a much stronger case if you have done steps 1-3 prior to. NOTE: you can call and run a scenario by a staff person but this is NOT a confidential service. * Estimated response / resolution 5-9 months, but often over 1yr. This as a last resort as it can have secondary consequences / reprisal as there can be a real possibility of less care if / when other physicians learn of your complaint and then fear drives avoidance of the stigmatized patient.
1-800-268-7096 x 603 | cpso.on.ca
Local Health (for your area)
This is the organizational body that oversees funding to all the hospitals in the area. IF you have exhausted the Patient Experience and Patient Ombudsman, you then have the option to escalate a written complaint here. Familiarize yourself with their website (ie. strategic priorities) as they all have policy goals that often look very different in practice and, the more parallels you can make to your concerns that highlight what is not happening in your case, the better.
Your Elected Representative/ up to and including the Minister of Health
MP or MPP/MLA for your elected riding. If in doubt just call a local representative and ask who the person is for your postal code. If this is an ongoing or larger issue, seek out the Health Critic of the opposing parties to further your concerns.
The Ministry of Health/ Prior Approval for Out of Country Funding Form
Once you have exhausted all attempts to secure healthcare in your province a patient can request a physician/ specialist to submit the Request for Prior Approval for Full Payment of Insured Out of Country Health Services.
1-888-359-8807 | health.gov.on.ca
The Provincial Ombudsman Office
A person can request a review of a denied MOH Prior Approval Request IF the patient has not already sought out the treatment. You can call in or use the online complaint form. They can not replace the HSARB Health Services Appeal and Review Board* process but may be able to make some inquires or provide contact info on who/ how to escalate the concern.
1-800-263-1830 | ombudsman.on.ca
Health Services Appeal and Review Board (HSARB)*
A person can request an appeal of a denied MOH Prior Approval Funding Request. If you believe that OHIP’s interpretation of the Health Insurance Act and its Regulations were incorrectly applied to your circumstances, you can request an appeal. These are court like proceedings, the applicant will be responsible to present evidence, call witnesses. Many individuals use a lawyer or a friend or family member as their representative. There can be a paper review or a public hearing. Transcripts are available.
1-866-282-2179 | www.hsarb.on.ca
Health Professionals Appeal and Review Board (HPARB)
A person can request a paper review or hearing to review/ appeal the decision of the CoPS*. This is an independent of govt. agency, their powers / process is outlined in the Regulated Health Professions Act. These are court like proceedings, the applicant will be responsible to present evidence, call witnesses. Many individuals use a lawyer or a friend or family member as their representative. There can be a paper review or a public hearing. Transcripts are available.
1-866-282-2179 | www.hsarb.on.ca (Ontario- check you province for their information)
Put ALL things in writing at ALL times (and keep your own record of communications and any responses). This includes your symptoms and requests for referral / or tests and leave a copy with the physician with written and verbal request for it to be added to the medical record. This also includes following up on all verbal complaints (to those you have reached out to) with a written summary / minutes of meetings, including all that was shared and the subsequent response.
Request a copy of all your reports (consultations/ imaging etc.). Most primary care physicians will provide a copy of your results / reports upon request. Every hospital has a patient records department of which you can complete a form to request any records. Typically, cost is approx. $30 / 20-pages. You can also request time to view your file prior to making a records request. Generally, imaging is available 24 hours after it is completed, thru the film library. There is normally a fee for imaging to be burned to a CD, unless it has been requested by another specialist / institution. The price is usually the same if you are requesting one image or all images done within that hospital.
Keep a written record of all appointments, investigations and trips to the ER. You can also request a copy of your health care record, which is a list of items billed by your health card.