Note: I am not fundraising or soliciting donations at this time, please be aware that any donations made here are going straight to the Change.org platform, and not to me!

I'm a lifelong Complex Illness patient in my mid 40s living in BC, who developed progressive neuroimmune and gastroenterological conditions after a childhood virus. After decades of misdiagnosis and dismissals, I was eventually diagnosed as having Autoimmune Small Fibre and Autonomic Neuropathy (often referred to as "Dysautonomia") along with other complications stemming from severe Sjogren's Disease. Throughout my life, I have experienced substandard care, have been harmed by significant medical neglect and mistakes, and have been left without necessary medical support and treatment, leading to applying and being approved for Medical Assistance in Dying (MAID). I came very close to going through with MAID several times, but started to slowly recover from the medical injuries that precipitated my application, and yet despite numerous expert consultations and confirmatory testing with top specialists in my conditions in the US, proposing numerous treatment options, I am still unable to get proper care in Vancouver, leading to significant ongoing deterioration in my health.

Since speaking out about my experiences, I have received hundreds of stories from other complex illness patients in Canada, and even had a much younger friend who was experiencing similar medical neglect go through with MAID last fall. Too many people - mostly young to middle aged women - are experiencing a similar fate, due to the inadequate healthcare infrastructure and expertise across Canada, for these often severe complex diseases which are not taken seriously by the medical establishment. This is a crisis - we have already lost multiple patients with treatable illness, and more continue to apply and be approved for MAID out of desperation to end their suffering. 

Complex diseases facing serious neglect in Canada include:

• Dysautonomia (including Postural Orthostatic Tachycardia Syndrome aka. "POTS")
• Ehlers-Danlos Syndrome (EDS)
• Mast Cell Activation Syndrome (MCAS)
• Gastrointestinal Dysmotility (eg. Gastroparesis)
• Craniocervical Instability (CCI)
• Sjogren's Disease (especially neurological presentations aka. "Neuro Sjogren's")
• Vascular compression syndromes
• And other commonly co-morbid conditions, many of which develop as post viral diseases, as part of the constellation of symptoms that make up Long Covid, Myalgic Encephalomyelitis (aka. ME/MECFS, formerly known as "Chronic Fatigue Syndrome"), and what is known as chronic Lyme disease.

We are systematically neglected by the healthcare system, and often treated with disdain and gaslit about the existence and severity of our illnesses, siloed into ineffective, antiquated group programs that do not provide the serious, patient-centred medical care we need. The delays in receiving appropriate and science-based medical care are causing major deteriorations in health, forcing many patients, primarily young to middle-aged women, into prematurely considering MAID due to the unbearable nature of their untreated symptoms.

Our human rights are being violated. The safeguards for Track 2 (non-foreseeable death) around access to medical treatment and palliative care options are not being consistently upheld, and there is no real oversight and nobody to go to when we are facing serious discrimination and neglect in the medical system, or failures in social support that make life sustainable. No Canadian lawyers, advocates, or doctors seem to care about what is happening to us - many of us have tried earnestly and failed to get help with advocacy. They know that we are up against massive institutions and most of us are too unwell to take up such battles. This is not just a breach of our human rights, but a failure of medical ethics, and indicative of a larger systemic failure in healthcare and social supports that could be rectified with an immediate and comprehensive plan of action. 

To address this, we the undersigned demand the urgent establishment of a network of Complex Illness Centers of Excellence across Canada, with a system in place to support patients in the smaller provinces and facilitate out-of-province and out-of country care when it is not available at home. In the interim, we need an immediate plan to end the ongoing neglect and harm of complex illness patients - a task force should be set up to create this plan. The centers should be dedicated to providing timely, modern, and evidence-based medical care tailored to the needs of this patient population. Such facilities would not only improve patient outcomes, and become research hubs, but would also serve as a haven for those who have been marginalized and neglected by the current medical services and providers.

Establishing a Complex Illness Center of Excellence network in Canada would attract knowledgeable specialists and foster a multidisciplinary approach to patient care, focusing on customized treatment plans that meet the unique needs of each individual. It would provide a centralized clinic network where patients can receive comprehensive evaluations, ongoing monitoring, and the level of coordinated lifelong care complex illness patients require to have improved patient outcomes. It would also provide a hub to further research and continuing education for other healthcare providers across the country, to help make sure all doctors in Canada are competent in evaluating and treating these conditions. Patients like us especially need a safety net when we are in medical crisis or falling through the gaping holes in the deteriorating medical system, as the standard ERs are often not safe or able to care for us appropriately. 

The Complex Illness Centers must include care from:

• Autonomic Neurology
• Neurogastroenterology
• Immunology + Neuroimmunology
• Genetics + Metabolics
• Infectious Disease
• Physiatry and Rheumatology
• Neuro- and vascular surgery
• Healthcare advocates or navigators
• Social workers (to ensure other non-medical needs are also met)

By signing this petition, you join me in advocating for this necessary change in our healthcare system, ensuring that complex illness patients across the country are treated with the dignity, respect, and timely, patient-centered modern medical care that we need and deserve. Help us champion a healthcare system that values all patients, even those with challenging complex medical issues, and our right to quality medical care and support. We must act now to save lives and prevent further unnecessary suffering and death.

Please be sure to use the #Care4ComplexCanada hashtag for any posts online about this urgent issue, or to share your own story.