Heal Canada Digital Magazine issue 1 10 2023

Heal Canada PATIENT ADVOCACY & CENTRICITY

October 2023

Disruption Culture in Patient Advocacy Cacheducation PAG Training Khure Health, the future of AI in medical diagnosis How to help your patient community live with their diagnosis Advocate for Patients & the Patient Community Canada's Health system: How does it work Living well with a medical diagnosis and its life challenges

PLUS Resources for Industry Stakeholders, Patients and Carepartners

Founders Note Welcome to our first Issue, of Heal Canada. A digital publication for Patient Advocates and Patient Centricity

I became a patient advocate when my late husband was diagnosed with a Rare Blood Cancer, Myeloproliferative Neoplasm. First with Essential Thrombocythemia, which progressed to Myelofibrosis. I became involved in Patient Advocacy and Education, I learned as much as I could about the disease, and engaged with Stakeholders such as Pharma organizations, spoke with Doctors and Researchers, and started my journey of being a Patient Advocate. That was in 2014.

A lot has changed during the last nine years. But the one thing that has remained constant, that is the ever-pressing need to advocate for the patient. Our patients, our community, and the patient ecosystem.

Heal Canada is a registered Not For Profit Organization in Canada.

Being a patient advocate is very rewarding, challenging, and exhausting, all in the same breath. Advocating for those diagnosed with an illness or continue to live with life challenges.

These people need our help to navigate for the best care, the best access to treatments and resources and the best medications. We are fortunate in Canada to have a sound healthcare system. While it's not perfect, there is a considerable need for Patient Advocacy!

Patient Advocacy has become part of my DNA, and sharing my knowledge is how I can give back. I hope you enjoy this publication and all the information in it.

Disclaimer: The Patient Advocacy Digital Magazine provides general information and resources to promote patient empowerment and awareness. The content is not a substitute for professional medical advice or treatment. Always consult with qualified healthcare professionals for personalized guidance regarding your specific medical condition or situation.

www.healcanada.org

Cheryl Petruk Founder Heal Canada

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PATIENT ADVOCACY

The Disruption Culture in Patient Advocacy Where is Patient Advocacy in Canada?

By: Cheryl Petruk

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PATIENT ADVOCACY

Patient Advocacy in Canada

by Cheryl Petruk

Disruption Culture and the Evolution of Patient Advocacy in Canada: Where Are We Now? The transformation of patient advocacy in Canada has been a persistent and progressive journey, moving from a traditional model of passively receiving healthcare services towards an active participant-driven culture. The disruption culture, known for its innovative and groundbreaking changes, has been the driving force behind the modern evolution of patient advocacy in Canada. This shift can be attributed to the various elements of society working in unison – technology, legislation, public awareness, and patient empowerment. But, where exactly is the patient advocacy movement in Canada today? This article explores the landscape of the evolving patient advocacy movement, its triumphs, its challenges, and what the future might hold

The Rise of Disruption Culture in Patient Advocacy In the recent past, healthcare in Canada was a one-way street. Medical professionals made decisions, and patients followed suit without much say. However, the shift towards patient-centered care has given rise to the disruption culture, promoting better, more personalized healthcare.

The disruption culture in patient advocacy stems from the need for change in the traditional hierarchy of healthcare, empowering patients to voice their needs, concerns, and rights.

The 21st century has seen a seismic shift in patient advocacy. One of the catalysts has been the digital revolution. With unprecedented access to health information, Canadian citizens can now research their conditions, treatments, and medicines independently. This online freedom has ignited a desire for patient autonomy and informed decision-making, fostering a stronger demand for patient advocacy.

Definition of Patient Advocacy Groups: Patient advocacy groups, also known as patient support groups or patient organizations, are non-profit groups that aim to represent the interests of patients with specific diseases or conditions. These groups work on many different levels, including: Awareness and Education Policy Advocacy Research Advocacy Support and Community

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Legislation and Public Awareness

Challenges and Areas of Improvement

In tandem with digital advancement, the change in Canadian legislation has significantly disrupted traditional patient advocacy. The Canada Health Act (CHA) and other provincial healthcare policies have undergone revisions to better accommodate patient rights. The law now mandates patient involvement in healthcare decisions, improving accountability, and transparency.

While the patient advocacy movement has made impressive strides in Canada, there are still areas that need improvement. Firstly, there is a need for better coordination among various advocacy groups. Although each group has its unique focus and goals, a more unified approach would increase their collective bargaining power.

Additionally, increased public awareness of patient rights has spurred this movement. High-profile cases have highlighted the need for better patient advocacy. Media coverage and social media campaigns have played vital roles in disseminating information about patient rights, contributing to the growth of patient advocacy groups and amplifying their voice in the public sphere.

Secondly, while the digital revolution has enabled patients to access health information, the digital divide persists, hindering some populations from utilizing these resources.

Elderly people, rural residents, and economically disadvantaged individuals often have limited access to technology and internet services, and consequently, health information. Closing this digital divide is essential to ensure equal opportunities for patient advocacy.

Patient Empowerment and the Rise of Advocacy Groups Patients are not merely passive recipients of healthcare anymore. They are active participants who are well-informed and seek to be involved in their healthcare decisions. This patient empowerment has triggered the growth of advocacy groups aiming to protect patient rights and promote access to quality healthcare. Canada is now home to numerous national and regional advocacy groups catering to a wide range of conditions and diseases.

These advocacy groups have successfully disrupted the healthcare landscape by advocating for patient rights, pushing for legislative changes, and providing valuable resources for patients. For instance, the Canadian Patient Safety Institute (CPSI) aims to enhance patient safety, while groups like the Canadian Cancer Society (CCS) provide information and support to individuals dealing with cancer.

Lastly, there's a need for continuous education and training for healthcare professionals regarding patient rights and advocacy.

Healthcare providers should be educated about the benefits of shared decision-making and patient engagement.

The Future of Patient Advocacy in Canada As we move forward, the patient advocacy movement in Canada is expected to grow stronger. The disruption culture will continue to break down barriers, fostering greater patient autonomy and involvement. In the future, we can anticipate more inclusive legislation, comprehensive digital health resources, stronger advocacy groups, and more proactive patients.

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Raise Awareness and $ for your Mission

CONTACT HEAL CANADA TO ASSIST YOUR ORGANIZATION IN HELPING GROW AWARENESS AND RAISE VALUABLE DOLLARS FOR YOUR MISSION ADMIN@HEALCANADA.ORG

Experiential Fundraising for your mission and create awareness for your organization? contact Heal Canada for more information about how your group can raise funds for your mission and create awareness

Canadian MPN Network Patient Advocacy and Education Group

Providing MPN Patients Support and Education

Info@canadianmpnnetwork.ca

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Cacheducation

written by: Victoria Radke

Patient Advocacy Training contact: Info@CACHEducation.org

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Training Patient Advocates There are over 5,700 registered health charities in Canada. These patient advocacy groups make a profound impact on our healthcare system by raising awareness of a particular disease, ensuring equitable access to quality care, helping patients navigate the complex Canadian medical system, supporting new research to find new treatments for specific diseases, and assisting families in countless ways, including financially, psychologically, physically, and spiritually. Canadian patient advocacy groups serve as beacons of hope, championing patients' rights, providing education, and influencing policy changes.

“Many patient advocacy groups start out at the kitchen table with one or two people trying to figure out a way help their child/sibling/spouse get better medical care. They soon learn that effective patient advocacy requires a deep understanding of science, medicine, policy, ethics, law, accounting, grant writing, marketing, fundraising, and communications. They also learn most of that information the hard way – indirectly, by word of mouth, or learning from their mistakes. It is not an efficient system.”

James Radke, PhD. Board Member, CACHEducation Grant Writer, Co-Founder, Zeal Access Inc Patient advocacy is a complex job. Unfortunately, it is also one that is difficult to get proper training on. Of the 5,700 charities and countless non-profit organizations, only a small percentage are managed by well-qualified executive directors and have properly trained staff and knowledgeable volunteers. In many cases, the advocacy groups are managed from kitchen tables and the leaders or staff are “trained” by word of mouth and learning from their mistakes. There is no school or program available to teach them how to raise funds, recruit and retain volunteers, write grants, fund researchers, talk to government agencies, etc. CACHEducation (Canadian Advocacy Champions of Health Education) is changing that.

CACHEducation is a not-for-profit organization designed to provide in-depth and ongoing training for persons eager to develop the skills necessary to be a professional patient advocate in today’s complex health care environment. The staff at CACHE have collectively over 50 years of experience working in patient advocacy, health communications, medical education, leadership, teaching, and fundraising.

“A lot of training for advocacy groups is done poorly – it is either done by people with limited advocacy experience or limited teaching experience.”

Cheryl Petruk, Board Member, CACHEducation

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Training Patient Advocates continued The goal of CACHEducation’s program is to provide persons interested in health advocacy with the tools necessary to effectively manage their own organizations/programs and share their knowledge/experience with others.

The program consists of a prerequisite one-semester program that is designed to familiarize individuals with the main components of patient/health advocacy in Canada. That is followed by three specialized programs that will focus on advocacy group management, political advocacy, and biomedical research.

Each 3-month semester consists of 8 one-hour lessons presented live to allow students to actively participate in the class and interact with the presenters and other learners. The lectures are led by Cheryl Petruk, a well-established college professor and a leader in patient advocacy. The first semester introduces the students to a variety of topics necessary to be a well-rounded patient advocate, with specific learning objectives in mind for each class.

Each live class is similar to classes conducted at colleges throughout Canada and utilizes Moodle and Zoom, as well as other programs to ensure that the students have ample opportunity to interact with the class, do their assignments, and keep track of their progress.

The classes will be recorded and made available to enrolled students on a secure site. The students also have access to all slides and references used in the classes. In addition, after completing the introductory classes, students can then venture into more advanced classes focused on policy, management, and/or research.

Patient Advocacy Training contact: Info@CACHEducation.org

“We have put a lot of thought into providing our students with a program that is intuitive and flexible to accommodate the diverse group of people that represent the advocacy community.”

Brad Crittenden, Board Member, CACHEducation Executive Director, Canadian Association Pompe

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mybloodmyhealth.ca

monsangmasante.ca encouraging Canadians to get their blood checked yearly

My Blood My health is a awareness campaign encouraging Canadian's to look after their blood health at their yearly check up.

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AI in Healthcare: Addressing Rare Diseases and Combating Physician Burnout

By Khure Health

The world of healthcare is complex and ever-evolving. While doctors are at the forefront of ensuring patient well-being, they too face challenges that can impact their efficiency and mental health. One such pressing issue is physician burnout. A 2022 survey by the Canadian Medical Association revealed a concerning trend: 53% of physicians reported experiencing high levels of burnout, a significant increase from 30% in 2017. The possible reasons for this surge in burnout are multifaceted: Overwhelming administration and paperwork.

The shift from preventative care to & sick care; due to patient overload and time constraints.

A rising number of patients with chronic diseases.

Rapid and ongoing changes in clinical guidelines.

The influx of new medicines like Rare, Gene, and RNA therapies that require a deep understanding.

Amidst these challenges, rare diseases add another layer of complexity. According to the Canadian Organization for Rare Disorders (CORD), one in 12 Canadians has a rare disorder(1). This means that approximately 3 million Canadians and their families are grappling with a debilitating disease that significantly impacts their lives. Alarmingly, two-thirds of these individuals are children.

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AI in Healthcare: Addressing Rare Diseases and Combating Physician Burnout continued While each rare disease affects only a small number of individuals, the understanding and expertise about these conditions can be limited and scattered across the country.

A rare disease is defined as a condition that affects fewer than 1 in 2000 people. About 80% of these diseases have genetic origins, and tragically, 25% of children diagnosed with a rare disease will not live to see their 10th birthday(2).

Enter Artificial Intelligence (AI) - a beacon of hope in this intricate landscape. One company leading the charge in this revolution is Khure Health.

Khure Health has created an AI-enabled Clinical Decision Support (CDS) platform that harnesses the power of AI and Machine Learning, particularly Natural Language Processing (NLP). This platform will utilize the vast amounts of clinical data, both structured (medicines, laboratory values, diagnostic codes) and unstructured data (written clinical history, physician notes, specialist reports) in the practice Electronic Medical Records (EMR) to good use. The “Khure CDS platform” provides physicians the support to understand patients who may be at risk of certain conditions and who require further investigation.

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AI in Healthcare: Addressing Rare Diseases and Combating Physician Burnout continued

By analyzing the EMR data, Khure Health aids doctors in potentially connecting the clinical dots faster and more accurately, alleviating some of the pressures contributing to burnout and assisting with preventative care.

Physicians who have used Khure Health's platform have shared their experiences: Dr. Fadie Amin MD from Toronto states; "The Khure Health program helped me successfully identify a patient in my practice who was undiagnosed and suffering from Hereditary Spherocytosis. We need more tools like this to help us quickly and efficiently identify undiagnosed or misdiagnosed patients within our practices" Dr. Andrew Vellathottam MD, CFPC from Scarborough mentions, Khure Health is a great resource to my practice. It provides insights into rare diseases that I probably would not have considered" Dr. David Price MD, CCFP, FCFP from Hamilton envisions, "Advanced AI-enabled Solutions, such as tech like Khure Health's clinical intelligence platform, harnesses the power of artificial intelligence [AI] to capitalize on the vast amounts of patient data in EMRs." Dr. Nadia Alam, MD, Family Physician, Halton Hills, Past President of the Ontario Medical Association shares, "like having a specialist at your fingertips. Using AI to augment physician intelligence, skill, and experience is a powerful combination."

"This is where innovative technology intersects with compassionate care so that no patient falls through the cracks. With Khure Health, we can do more".

Dr Nadia Alam, Family Physician, and Past President of the Ontario Medical Association”

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AI in Healthcare: Addressing Rare Diseases and Combating Physician Burnout continued

The Bigger Picture: Khure CDS platform impact is already evident. In a published study titled "Impacting Management of CKD. Through Primary Care Practice Audits: A Quality Improvement Study" it was found that 34% of patients had immediate care pathway optimizations (changes to their care) within the first 45 minutes of physicians reviewing the information presented on Khure’s platform.

Read the full study at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9761206/ The immense potential in the marriage of AI and healthcare, as exemplified by Khure Health, promises a brighter future for patients, especially those with rare and complex diseases.

By harnessing the power of data and technology, we are one step closer to a world where every patient receives timely, accurate, and effective care, and where physicians can find respite from the pressures leading to burnout.

The many capabilities of Khure Health made possible through AIenabled clinical intelligence: Clinical Decision Support accelerating linkage to care.

Appropriate patient, appropriate care, appropriate time.

Accelerated Clinical Trial Patient Matching Real-World Data and patient journey insights Patient Registries including merging EMR data with Patient reported Outcomes Connecting Physician Associations and Societies through an EMR-agnostic, AI-enabled clinical intelligence platform

“Khure Health is a subsidiary of HEALWELL AI. www.healwell.ai HEALWELL AI is a healthcare technology company focused on AI and data science for preventative care.

Our mission is to improve healthcare and save lives through early identification and detection of disease

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Empowering Patients and Communities: Navigating the Diagnosis Journey Together In the intricate landscape of healthcare, a significant moment is the delivery of a diagnosis.

This moment signifies a crossroads - the juncture where a patient's life is given a new direction, a newfound clarity wrapped in an oftentimes complex health condition. Receiving a diagnosis is a powerful and transformative experience, capable of altering not only a patient's lifestyle but also their immediate community's dynamics. In our shared pursuit of better health and wellbeing, how can we help patients and their communities live with and navigate their diagnosis?

Education is key. The patient ecosystem should be educated about the specific condition understanding its symptoms, treatment options, and prognosis. The information should be presented in a language that's accessible, removing medical jargon that can confuse or intimidate. Informed ecosystems are better equipped to provide the support needed without inadvertently contributing to a patient's stress or confusion.

Promoting Mental Health: Addressing the psychological aspects of a diagnosis is paramount.

Mental health should be treated with as much importance as physical health, and professional resources should be made available for both patients and their ecosystems. These may include therapists, psychologists, support groups, or hotlines. Patient ecosystems and patient communities can also help by creating safe spaces for patients to express their fears, concerns, or frustrations without judgment.

by: Cheryl Petruk

Facilitating Open Communication Open and empathetic communication forms the backbone of a supportive environment.

Patients should be encouraged to voice their needs, concerns, and expectations. This can help them feel understood and allow the community or ecosystem to respond appropriately. Communities, too, should communicate their thoughts, fears, and limitations, fostering an environment of mutual understanding and respect.

Empowering Patients: Empowerment is a potent tool that instills confidence in patients to manage their conditions.

Healthcare providers can foster this by providing comprehensive disease education and treatment options, encouraging patients to make informed decisions. Selfmanagement programs or peer-support initiatives can also empower patients, giving them the tools to adapt and thrive despite their diagnosis.

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Empowering Patients and Communities: Navigating the Diagnosis Journey Together continued Understanding the Patient Experience Firstly, it's essential to remember that each diagnosis comes with an individualized experience.

Patients grapple with a host of emotions - ranging from relief upon finally finding an answer to their ailments to fear, anxiety, or sadness about the future. Coping with a diagnosis requires much more than mere physical resilience; it's also an emotional, psychological, and social journey.

Patients will need to adapt to a new lifestyle, often characterized by frequent medical appointments, medication regimens, or therapeutic routines. They may experience changes in their physical abilities, which can lead to alterations in their roles within the family or society. Alongside this, the psychological impact of a diagnosis can range from mild distress to severe depression or anxiety.

Building a Resilient Community While patients stand on the frontlines of their healthcare journey, their community is an essential part of the supporting cast. Families, friends, colleagues, and local groups play a crucial role in providing emotional, practical, and informational support. But how can they be guided to effectively rally around a newly diagnosed patient? Addressing the psychological aspects of a diagnosis is paramount. Mental health should be treated with as much importance as physical health, and professional resources should be made available for both patients and their communities. These may include therapists, psychologists, support groups, or hotlines. Communities can also help by creating safe spaces for patients to express their fears, concerns, or frustrations without judgment.

The Role of Technology: The digital age has significantly transformed the healthcare landscape, bringing an array of technological tools to aid patients and communities. Telemedicine has made healthcare accessible even from remote locations, while smartphone apps and wearable devices help monitor health parameters, remind about medications, and even offer psychological support. Online communities also provide valuable platforms for sharing experiences, advice, and emotional support.

Bridging Healthcare Disparities However, the path to supporting patients and their communities isn't devoid of challenges.

Disparities in healthcare access and quality, often influenced by socioeconomic factors, can create significant obstacles. Ensuring equitable access to information, care, and resources is essential for all patients, regardless of their demographic background.

Helping patients and their communities live with a diagnosis is a collective responsibility that requires concerted efforts from healthcare providers, patients, communities, and policymakers.

Through education, mental health support, open communication, patient empowerment, technological advancements, and a relentless drive towards health equity, we can create a supportive environment for patients to navigate their diagnosis journey, transforming it into a testament of resilience and strength.

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Benefits of Diversity, Equity, and Inclusion by: Cheryl Petruk

Embracing Diversity, Equity, and Inclusion: Building a Strong Foundation for Canadian Healthcare.

In a multicultural and inclusive nation like Canada, the importance of diversity, equity, and inclusion (DEI) cannot be overstated. While these principles are essential across various domains, their significance is particularly pronounced in the healthcare system. Canadian healthcare providers and patient advocacy groups must recognize the benefits that stem from embracing diversity and fostering equitable and inclusive practices. By doing so, we can cultivate an environment that not only promotes individual well-being but also strengthens the fabric of our healthcare system.

To Understand Diversity in Canadian Healthcare we look to Canada's population which is marked by its rich cultural tapestry, encompassing individuals from diverse ethnic, racial, religious, and linguistic backgrounds. This diversity presents unique challenges and opportunities within the healthcare system. Understanding and respecting cultural nuances and practices are crucial to ensure that every patient receives personalized and effective care. Patient advocacy groups play a pivotal role in championing these diverse voices and ensuring that healthcare providers are sensitive to the unique needs and experiences of all patients.

Equity in access to healthcare is where equity refers to the fair distribution of healthcare resources and services, acknowledging that different individuals have varying levels of need. Unfortunately, disparities in access to healthcare persist in Canada, affecting marginalized communities disproportionately. Patient advocacy groups must advocate for policies that address these inequities and work toward ensuring that every Canadian, regardless of their socio-economic status, geographic location, or cultural background, has equitable access to high-quality healthcare services. By actively promoting equity, we can strive to create a healthcare system that leaves no one behind.

Inclusion for effective patient care lies at the heart of effective patient care. It entails creating an environment where all patients feel valued, respected, and heard. Patient advocacy groups play an integral role in promoting inclusive practices within healthcare institutions. This includes encouraging healthcare providers to engage in culturally sensitive communication, accommodating diverse language needs, and recognizing and addressing implicit biases. Embracing inclusion enables patients to actively participate in their healthcare decisions, fostering a sense of ownership and improving overall health outcomes.

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Benefits of Diversity, Equity, and Inclusion, continued The Benefits of Diversity, Equity, and Inclusion: are achieved by embracing diversity, equity, and inclusion within the Canadian healthcare system and this has numerous benefits. First and foremost, it leads to better health outcomes. When patients receive care that is attuned to their unique needs and cultural backgrounds, they are more likely to adhere to treatment plans and achieve positive health outcomes. Additionally, a diverse healthcare workforce allows for a wider range of perspectives, ideas, and approaches, fostering innovation and problem-solving. Diverse healthcare teams can enhance patient satisfaction, decrease healthcare disparities, and promote cultural competency among healthcare providers.

The Role of Patient Advocacy Groups have a crucial role in driving the DEI agenda in Canadian healthcare. By working in collaboration with healthcare organizations, policymakers, and community leaders, these groups can influence change and ensure that the principles of diversity, equity, and inclusion are integrated into healthcare policies, practices, and decision-making processes. Through education, awareness campaigns, and grassroots efforts, and patient advocacy groups, all of these can empower patients, foster cultural competency among healthcare providers, and drive systemic transformation.

Diversity, equity, and inclusion are not just buzzwords; they are essential principles that underpin a thriving and equitable healthcare system. Patient advocacy groups hold significant power in advocating for the rights and well-being of diverse patient populations in Canada. By prioritizing DEI, we can create a healthcare landscape that is not only responsive to the needs of all patients but also advances social justice and equality. Together, let us champion the cause of diversity, in our Canadian Healthcare system.

for more information how LCA can help you info@latinxcanceralliance.org

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Canadian Healthcare System, How does it work ? by: Cheryl Petruk

Canada, often hailed for its universal healthcare system, provides its residents with a variety of medical services that are predominantly free at the point of use. Despite the advantages, it is essential for patients to understand and navigate this vast system efficiently. Patient advocacy and centricity play crucial roles in ensuring that individuals receive the care they need in a manner that respects their values, preferences, and expressed needs.

The Foundation of Canada's Healthcare System: also known as Medicare, is publicly funded and primarily privately provided.

The Canada Health Act of 1984 underpins the healthcare system, ensuring that all Canadian residents have access to medically necessary hospital and physician services without any direct charges.

Key Features: Publicly Funded but Privately Delivered: The federal government provides financial support, while provincial and territorial governments are responsible for its planning, organization, and delivery to their residents.

Universal Access: Regardless of their income or where they live, Canadians have access to the same level of healthcare.

Comprehensiveness: All necessary hospital and doctor services are covered. Provinces may expand their services for additional healthcare needs.

Portability: If Canadians move to a different province, they retain their health coverage.

Accessibility: No one can be denied service because of financial constraints. Waiting times, however, remain a concern in some specialties.

The Role of Patient Advocacy: Patient advocates play a pivotal role in the Canadian healthcare system. They guide, support, and help patients navigate the complexities of the system, ensuring that patients' rights are upheld. They can be professionals, family members, or trained volunteers.

Functions of a Patient Advocate: Information and Education: Advocates ensure that patients are informed about their medical condition, treatment options, and rights.

Support and Guidance: Advocates provide emotional and logistical support, helping with paperwork, understanding medical jargon, and making healthcare decisions.

Liaison: They bridge the gap between patients and healthcare providers, facilitating better communication.

Protection: Advocates ensure that patients' rights are upheld, especially when they cannot speak for themselves.

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Canadian Health system, How does it work? continued

Achieving Efficient Navigation: Tips for Canadians Know Your Rights: Understanding your rights as a patient can help in decision-making and addressing concerns.

Stay Informed: Ask questions about your condition, available treatments, and potential side effects.

Use Digital Health Tools: Many provinces offer e-services like online appointment bookings, electronic health records, and telemedicine. These can save time and improve accessibility.

Network with Patient Communities: Joining patient groups can offer insights from others who've navigated similar health challenges.

Seek a Patient Advocate: If the system feels overwhelming, it may be beneficial to have a trained advocate by your side.

Feedback and Participation: Engage with healthcare providers, offer feedback, and participate in community health discussions.

Canada's healthcare system offers numerous benefits to its residents, but understanding and navigating it efficiently can sometimes be challenging. Patient advocacy and centricity stand as powerful tools to ensure a person-centered approach in care As the healthcare landscape evolves, it becomes more imperative to keep the patient at the heart of all decisions, ensuring a system that truly serves the people it's meant to serve.

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Empowering Advocacy, Elevating Patients and Patient Communities by: Cheryl Petruk

Healthcare practitioners play an essential role in patient care, yet the landscape of health care services is often navigated most successfully by a shared responsibility between patients, practitioners, and advocates. Advocacy for patients and patient communities is a paramount aspect of ensuring equitable, comprehensive, and personalized care. It is a calling that transcends the boundaries of personal medical issues and addresses the broader needs of patients, incorporating human rights, access to health services, health policies, and awareness.

Primarily, understanding the patient's perspective is the cornerstone of effective advocacy. It involves empathetic listening to the patient's experiences, recognizing their fears and apprehensions, and validating their concerns.

Patients are the subject matter experts of their bodies and experiences. Thus, their insight is invaluable in guiding the direction and focus of advocacy efforts.

Additionally, familiarity with the health system is essential. Advocates must understand how healthcare works, including processes for diagnosing and treating conditions, how referrals are made, and how to handle insurance matters. Knowledge of pertinent laws, rights, and policies that protect patients is a critical aspect of this role, as it aids in preventing discriminatory practices and ensures appropriate service provision.

Furthermore, the ability to communicate effectively is a vital advocacy skill.

Advocates often act as liaisons between the patients and healthcare professionals, making it important to convey information accurately and efficiently. At the same time, advocates must also communicate with lawmakers, stakeholders, and the public to drive awareness and instigate policy changes.

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Empowering Advocacy, Elevating Patients and Patient Communities continued

Educating patients and communities is another critical advocacy aspect. By empowering individuals with knowledge about their conditions, rights, and available services, advocates contribute to improving patients' capacity to make informed decisions about their health.

Education also extends to addressing public misconceptions and stigma around particular health issues, which can foster a more inclusive and supportive environment for patients.

Moreover, patient advocacy extends beyond individual patients to patient communities. Here, advocacy can take the form of support groups, awareness campaigns, or lobbying for legislative changes. Advocates should encourage patients to participate in these communities and share their experiences to highlight systemic health issues, disparities, and gaps in services. This collective advocacy can lead to more substantial changes in health systems and policies.

However, it's essential to remember that each patient community has unique needs and experiences, so the advocacy approach must be customized. Advocates should take the time to learn about the community’s specific health challenges and cultural context, and involve community members in advocacy planning and actions. This approach ensures that the advocacy is truly representative of the community's needs.

Advocating for patients and patient communities can be complex and multifaceted, but it is an instrumental part of transforming the healthcare landscape to be more patient-centered and equitable. By understanding patient experiences, navigating health systems, communicating effectively, educating patients and communities, and advocating at the systemic level, individuals and groups can help amplify the voices of patients and effect meaningful changes in healthcare.

The goal is clear: a healthcare system where patients' needs and experiences are not only acknowledged but also shape the provision of care.

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“STRESSTEMBER” IS A REAL THING. ARE YOU FEELING IT?

By Wendy Reichental

"It's the most wonderful time of the year!" That Andy Williams Christmas classic blares from the TV, and it is not a Hallmark Christmas movie or even December! It's a Staples commercial showcasing an ecstatic parent doing cartwheels, telling us, "They are going back!" as two zombie-like and not-soenthusiastic kids follow down the aisles to collect their school supplies. This clever Staples commercial runs as early as the beginning of July, when Costco displays their ski jackets, and dollar stores replace their BBQ-themed decorations with that of Halloween!

From the time I was a kid, I hated September! September, to me, signified the end of my carefree days of sleeping in and the start of dank, darker days and moods, with a generalized fear of the unknown and anticipation of what might lie ahead. To this day, though those shrill school bells no longer rouse me, alarm bells of a different sort have taken up room deep inside my psyche and the pit of my stomach.

For me, the end of summer and the notable shift to autumn means getting back to business and a more structured, regimented schedule. It's also a time of meeting expectations and overcoming pressures to achieve specific goals or milestones. Autumn is also commonly used as a metaphor for the cycle of life, with all that transforming, transitioning and impermanence. All things that disrupt my gut flora and ignite my anxiety. Then, recently, I read that I am not alone; many people suffer from what is now actually coined "Autumn Anxiety."

Autumn anxiety refers to an increased sense of uneasiness or apprehension; in some people, it can contribute to feelings of sadness or depression, which is why this type of anxiety can be associated with seasonal affective disorder (SAD). Of course, everyone will experience some level of stress and concern, and the severity of anxiety will vary depending on individual circumstances, current events, and various factors beyond this specific time of year.

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“Stresstember” is a real thing. Are you feeling it?

Autumn anxiety refers to an increased sense of uneasiness or apprehension; in some people, it can contribute to feelings of sadness or depression, which is why this type of anxiety can be associated with seasonal affective disorder (SAD). Of course, everyone will experience some level of stress and concern, and the severity of anxiety will vary depending on individual circumstances, current events, and various factors beyond this specific time of year.

Many ingredients can trigger autumn anxiety, from fatigue, decreased sunlight, inclement weather, and difficulty sleeping to general tensions and uncertainty about rapid change in routines, particularly for parents. All can contribute to making us more irritable and jittery. Elevated anxiety levels are our body's natural response to stress and fear. It is vital to differentiate where this is coming from. Is it coming from things based on facts or "what ifs?" Being realistic and honest with ourselves when expressing our true feelings and emotions is crucial to understanding and overcoming anxiety.

In a New York Times article on "How to Cope with Fall Anxiety," writer Melinda Wenner Moyer interviewed three psychologists with expertise in managing difficult emotions.(4) Joy Harden Bradford, a psychologist in Atlanta, suggests not suppressing your feelings. "It is good to say, "OK, this is typically a difficult time of the year for me." I'm going to be patient with myself.

"I'm going to do the best that I can."(5) Susan David, a psychologist in Massachusetts and the author of the book "Emotional Agility," recommends the practicality of not letting your emotions fester; she adds that "bottling up emotions is linked to an increased risk for burnout and lower overall well-being."(6) Tracy Dennis-Tiwary, a psychologist and the director of the emotion regulation lab at Hunter College in New York City, offered her advice, which I most identify with: "End-of-summer sadness also provides us with useful data." (7) It's information about what we really value and want in our lives.

"If your anxiety or sadness revolves around an issue that feels out of your control, try to identify small things you can address." https://www.nytimes.com/2022/08/18/well/mind/fall-autumnanxiety.html

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So, if, like me, you are facing autumn anxiety, there are a few self-care strategies that can help you reframe your thinking and relieve some of those nerves and anxiety: We can begin with some simple breathing. We often forget to practice slow, deep breathing, which immediately helps calm our nervous system. Mindful practices such as meditation and yoga have been proven successful in helping you stay in the present moment and reduce racing thoughts, while promoting deep relaxation and self-awareness.

The next thing to try is the one most advocated, and the late great Olivia Newton-John said it best: "Get physical!" Move your body! According to the World Health Organization, "regular exercise can reduce anxiety by releasing endorphins and promoting better mental and physical well-being."(8) And let's face it; those cooler days are perfect for wearing those comfy, vintage soft jogging suits.

For further information about our brain health and its connection to mental well-being, visit the Canadian Mental Health Association at: https://cmha.ca/news/understanding-brain-health-and-its-connection-to-mental-well-being/.

You can only engage in outdoor activities by prioritizing having a healthy lifestyle. Place some emphasis on watching your diet, getting balanced nutrition, getting adequate sleep, and limiting caffeine and alcohol intake. Keeping things organized in your life can also help you avoid feeling overwhelmed. Plan tasks ahead of time.

Don’t forget to include in those plans making time for social connections. We heard a lot about this during the pandemic, and it has never been more obvious: maintaining quality over quantity solid relationships can enrich your life and distract you from those nagging negative thoughts.

Unfortunately, there are no quick fixes, and different techniques work for different people, so finding what works best for you is essential. There is never any shame in seeking guidance through professional support if you struggle with persistent, debilitating anxiety.

I have not become a complete autumn convert yet; I still have my anxieties, including trying one of those pumpkin spice lattes, but I am trying to see the positive aspects of the season.

Along with its vibrant, colourful landscape and abundant harvest, autumn also brings an amazing opportunity for inspiring creativity, a state of coziness, wonder and personal growth if we so choose.

"It's the first day of autumn! A time of hot chocolatey mornings, toasty marshmallow evenings, and, best of all, leaping into leaves!" from Winnie the Pooh's Grand Adventure.

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Patient Journey's

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What is advocacy?

Helping yourself and others By: Marc Lasorsa

When I was asked if I would write an article about patient advocacy as it relates to my life experiences, my first thought was – how is this going to help anyone who may read it? As I started reflecting on my experiences, it became clear that, be it by happenchance or by deliberate action, my 45-year long journey to find treatments for my chronic illnesses and to find ways to live a full life, have provided me insight about how people have advocated for me and how I have advocated for myself, where I was successful and where, in hindsight, I should have been more diligent. It is this experience that I will share with you.

For me it began when I was 12 years old and was diagnosed with juvenile arthritis in both wrists and ankles. I began to feel some pain in those areas a few years earlier, but a very manageable pain. As months went on the pain increased to the point that I was unable to walk for the first few hours of the day and had to crawl on the floor until the pain went away or became more bearable.

As the day went on, I had to tip toe my way around because the pain was so severe. My parents took me to our family doctor and after six months or so, I was diagnosed with juvenile arthritis and began treatment to deal with the inflammation on my joints. It also meant that I could no longer participate in sports, a difficult thing to accept for a 12-year-old who loved nothing more than to be active. But with parental support and a desire to find a treatment, I kept hope that I could resume my activities in the near future.

In the mid 1970’s, the anti-inflammatory medications we see today were nonexistent and large dosages of aspirin were the prescribed treatment. The treatment at that time consisted of taking 12-16 aspirins a day One can only imagine the effects taking 12-16 aspirin a day would have on a 12-year-old boy. The results were not necessarily successful. But it was the best treatment available at that time. So, my mother as both my advocate and parent began searching for other remedies with the hope of ending her son’s pain from a chronic illness. And so, my journey to find better treatments began and they included alternative treatments, today we would refer to some of these as naturopathic remedies. My mother seeing her son in pain with no improvement, stopped at nothing, from wrapping my ankles in lard, drinking concoctions of teas, to visiting faith healers that promised to cure my ills with one touch of their hand on my forehead, to visiting churches that had a history of healing the sick. As I reflect on those experiences, I simply see a parent, an advocate with resolve searching for a remedy or a solution to improve her child’s health.

My journey was full of disappointing experiences at that time. But my mother was my biggest advocate, and nothing was off the table.

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What is advocacy? Helping yourself and others continued.

During this period of my life, it was my parents who advocated for me, who, by their own resolve, gave me hope that I could get better. This taught me to seek answers and not stop until you were satisfied and to keep going. This is what my parents did for me. It also reminds me of the support my entire family gave me and its importance to my overall desire to find a better way to deal with my health, both mental and physical. This will be a constant in my life and in our families, as we all support each other. I cannot overstate the importance of this. I believe family support, at least in my experience, is one of the pillars to the foundation of advocacy.

Fast forward a couple years and the arthritis goes into remission and I resume a pseudo normal life.

The daily dosage of aspirin was reduced to a couple here and there to take care of some minor swelling or light pain. And so, we thought we had won the battle against arthritis. We had done so with the help of whatever was available to us at that time. My family was relieved that, by now I was 15 years old, I could walk without pain, and go back to living a somewhat normal life.

While this story is no different than countless others and a far less serious condition than other children must go through, the journey here will have recurring advocacy themes, one being family support. The search for the proper treatment available at any given time and the mental side of having to deal with a major health issue and the role of an advocate has with these.

Fast forward a few years and I am now in my late teens, living in Toronto and have been symptom free for a few years and the arthritis is now in my rearview mirror. Until one day I begin getting lower back pains. During regular visits to our family GP, I mentioned that I was experiencing lower back pain and some stiffness in the morning. While examining me and having my full health history he concluded that I was too active and played too many sports and that this was likely the cause of the pain.

Having faith in what the doctor says, I do not question his diagnosis, nor did I seek other opinions.

One night, I am playing tennis with a family friend who happens to be a third-year student at the Ontario Chiropractic College, and he sees me struggling with my back and that I am in pain.

After our match he invites me to visit him at the college to have a look at my back. It was during this visit that I was diagnosed with Ankylosing Spondylitis, an arthritic condition that affects the spine and the Sacro iliac joints. After two years of discussions with my GP, who had my history of juvenile arthritis in front of him, I was diagnosed by a third-year chiropractic student.

Should a 19-year-old have questioned his doctor’s diagnosis and asked for a better answer to his back issues.? In hindsight, yes, he should have and in patient advocacy, there is a way to “professionally question a doctor’s diagnosis". I did not and it is through happenchance that I was able to have the diagnosis done. Had it been done a couple years earlier, I would likely have had the opportunity to begin treatment earlier and live my life as much as possible, without pain.

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What is advocacy? Helping yourself and others continued.

The lesson I learned here is to have an open dialogue with your doctors and if you are not satisfied with the answers to your questions, express this concern, and your desire to get better and have a better quality of life. If the answers are not there, seek other help. In my case, after I alerted my doctor of the diagnosis and where it had been made, I was told bluntly that if I wanted my medical care to come from the chiropractic college, I should see another GP. I took that advice.

So, a new journey begins that will take me to the depths of despair for help, to the gentle caring helping hands of care givers who shared with me the responsibility to improve my health and to offer guidance when needed.

I now have the proper diagnosis, a new family doctor and have been referred to a rheumatologist, who now can offer a treatment strategy. The prescribed treatment at that time were NSAID’s, non steroid anti-inflammatory medications and there were a few available, with a variety of dosages available depending on the extent of the condition.

I am now in my early twenties, I am in university in Montreal and taking regular dosage of antiinflammatory medications, and when I am back in Toronto, I regularly visit my rheumatologist.

Feeling pretty good on most days, a normal life resumes with the odd inflammatory flare up and some resulting pain and discomfort. Not perfect, but livable.

There are recurring advocacy themes that are also present at this time - family support and encouragement, seeking and taking advantage of the best technology/treatment available at any given time, maintaining a good relationship with your doctors by seeing them regularly and following the prescribed treatment. This is where I begin realizing that advocating for yourself also means taking responsibility for your health and making regular visits to your doctor so that they know how you are doing.

Several years later, I am now in my late twenties and on most days, there is discomfort, but somewhat manageable. But I recall a moment when I am out playing golf with some friends, I had to leave the course due to severe pain. There is no relief over the next few days and so I visit my family doctor to explain this and to say that it is becoming more and more difficult to live a normal life, be it full time work, or even just a restful sleep. He decides to refer me to the Canadian Arthritis Society, who provide instructional classes on my type of arthritis, and provide me with support for my condition. There are moments in your life that years later, you recognize were life changing, but at the time you do not understand their significance. This was one of those moments.

Marc Lasorsa, resides in Markham Ontario, and is originally from Montreal Quebec

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What is advocacy? Helping yourself and others continued.

The Canadian Arthritis Society has as part of its many roles a patient advocacy group, and at the time I did not know this type of support was available to patients, but my GP knew and encouraged me to seek this support. So, I joined a group of patients and in these classes I was educated on my condition. Furthermore, I am referred to a physiotherapist, a psychologist, occupational therapist as well as a registered nurse. The physiotherapist teaches me exercises to do to alleviate the pain, the psychologist helps to explain that living with pain is difficult, and to understand this and to accept it and to help me understand that there are professionals who want to help me. The occupational therapist advises me to seek work in a field that allows me to move around a lot and be sedentary and the nurse refers me to a rheumatologist who has extensive experience with my condition of ankylosing spondylitis.

The meetings and education I had received through the Canadian Arthritis Society lay the foundation for what would become a template on my strategy and on my ability to manage my condition; both at that time and today. I cannot overstate the importance of having this advocacy group providing me with the education to learn more about my condition, their guidance though a complex medical system and the support I never knew existed or was available. I wanted answers to why I was in so much pain and what could be done. I had to advocate for myself. My GP did not have all the answers, but he said these people may. And they did! They advocated for me and sent me on my way to improve care and to help me live better each day.

It's now taken me almost 20 years, through trial and error, happenchance, and good decisions, but I am surrounded by a health care team that has the expertise, accessibility, and reliability to care for me. I am encouraged and see some very positive signs in my condition from new treatments that are now available. I see a specialist three times a year, my condition is closely monitored, and my condition is assessed to see of any progression, which unfortunately can not be stopped. But during these visits, I am also informed of other possible health conditions associated with "AS" and to look out for possible tell-tale signs. A few years after my initial diagnosis I was showing signs of inflammatory bowel disease, a related condition to those with Ankylosing Spondylitis and I was referred to a gastroenterologist where I was diagnosed with Chron’s Disease and required immediate surgery.

Without a proper team in place who had educated me on my condition, this diagnosis may not have been made early and could have led to more complications. So, the results of the advocacy team that had counseled me and helped me build a medical support group, I was able to deal with a condition early and with great results.

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What is advocacy? Helping yourself and others continued.

Today, I have two specialists on my health care team who work in conjunction with each other to ensure that my conditions are well managed. New medications are now available, biologics, which help re balance my immune system and both of my conditions have greatly improved, to a point where both doctors believe that I am in remission.

It has been a long road from a 12-year-old boy having difficulty walking, to where I am today, being surrounded by a great team of physicians. But it all started when I asked for help at a time when I was in great pain and never stopped seeking answers. I, and my parents, advocated for me because I thought there had to be better answers and solutions, I sought the proper help, and was guided by knowledgeable and caring health practitioners and through time and perseverance, have found a way to live a fuller life, free of pain most of the time.

I also became more grateful that I was able to have the help available. When I was asked by my rheumatologist, who thought at the University of Toronto medical school, if I would volunteer to be a patient during one of her classes where she taught students on AS, I did not hesitate. It allowed me to give back to her and to help raise awareness of the condition, in the hope that maybe someday, these second-year med students could recognize this condition in one of their patients and act earlier, an experience I wish I had.

Both my brothers were diagnosed with "AS" and I became their advocate and helped them in each of their own journey's.

I always remind myself of a conversation I had with my gastroenterologist. He had written a reference letter to a cardiologist who I was to go see. At the time, there was early evidence that people with inflammatory conditions such as mine were prone to certain heart conditions, so I wanted to investigate this. In his letter to his colleague, he was very complimentary of me. Curious, I asked, why the kind words in your letter? And his answer, “we like you around here” to which I answered why? His answer: “because when we tell you to do something and you do it and you get better and if not, we figure something else out” And in my naïve self I said, well doesn’t everybody?

To which he resoundingly said NO. Again, one of those "Ah ha" moments. It all became clear to me at that moment that yes, I had advocated for myself for 30 plus years. I had asked for answers and sought remedies. But just as importantly, I had followed the doctor’s advice, asked questions, and had an open dialogue with my physicians and have gotten better. Medicine isn’t perfect and it has its limits, but being at the edge of those limits brings opportunities for relief, and with time, technology and treatments also improve leading to improvements in your conditions. It did for me.

At the end of the day, we all have our ailments, some more life threatening than others, but if we are willing to ask the questions, seek help, surround ourselves with caring friends and follow our doctors’ orders, we will have better quality of life. And maybe, one day, the knowledge that you gain from your journey can be shared with someone in need who can use some help in their journey. And isn’t this what advocacy is - helping yourself and others.

The world needs more advocates. I encourage you to "Be one"!

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“Matters of the Heart”

By Hazel Bell

Pre-incident – My entire married life, not unlike many women of my age, was spent being “Wonder Woman.” We were the generation that was told to believe that we could have and be everything.

While this is true, and still true today, as I tell my daughter-in-law and grandchildren, there is much more information and knowledge that needs to accompany this mindset.

I was a woman that thought that I had to do everything perfect! I had to be the loving and caring wife and mother to my children. Take care of everything in my home, myself! I was responsible for everyone’s health and mental fitness. I was a career woman and worked like a fool to get promoted and make more money than anyone else around me. I had to have a good home, good vehicles, good vacation trips, good clothing for everyone in my family, and all the latest toys for both children and adults. All efforts to save money were at my expense alone. I did without, took the train to work (adding an additional hour to my day). I hated to cook, so would pick up fast food, or order pizza, or just eat out to avoid cooking, telling myself that my family was nourished and I was providing good food. Plus, I could afford this!

What I lost sight of in all this buzz, was myself. I was a wife. I was a mom. I was a loyal and hardworking staff member at work. I did not look after myself, either physically or mentally. Every year I needed new clothing because I had gained another 10 to 15 pounds. I was still moving fast, and keeping up, so what did it really matter. Every time there was some health issue for me to get checked out, the tests always came back that I was fine, no high blood pressure, no cholesterol issues, no signs of diabetes, just my weight and mental health were issues. I knew that mental health was a concern, my mother suffering horribly her entire marriage made me see that, but only to a point of counselling and taking meds to numb myself.

Identifying frustrations and intolerances in my personal life were beginning to be easier to eliminate, but taking care of myself was still not the priority that I needed. Even with retirement, I was still the family caregiver and the one to sacrifice to the comfort of others. I was not slowing down, I was not caring for myself, even though I was trying to eat better and exercise regularly, the mental/physical balance was lacking. I encountered opportunities to learn multiple modalities of self-healing, but even with this knowledge, I did not fully understand how this would be my strength and main source of learning to care for myself first.

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Matters of the Heart continued

What does the body do when we do not pay attention to warning signs? It reacts with even more severe consequences. In my case, the price was huge!

It is important for Women to know that a heart incident will not necessarily present the same as it does for men. For myself it was just not feeling well while riding my exercise bike, and a heartburn sensation in my chest. I am not a person to generally suffer from heartburn so this was a cause to really pay attention to myself. I got off the bike and laid on my bed, when my husband came into the room for an unrelated item, I was smart enough to ask for 2 aspirin. The feeling did not go away and together we made the decision that something was clearly wrong and I needed to go to emergency.

Fortunately, we live in a very small, rural community that offers basic hospital emergency services, and I was immediately seen, blood work along with other testing was preformed to determine I had suffered a heart incident. I needed to be transferred to the Foothills Hospital in Calgary, Alberta, as that was the closest heart treatment center.

The Cardiac Catheterization Lab at the Foothills Hospital was my first stop, as my age was almost 60, and artery blockages were believed to be the cause of my incident. I was prepped and entered the lab thinking to myself, this would be quick and painless as they use a catheter through the wrist.

However, the doctor soon found that my issue was a “Spontaneous Coronary Artery Dissection” (SCAD). They were able to place a stint type catheter for one artery but were not able to proceed with more, as they discovered while my heart was positioned correctly, the arteries were somehow reversed from birth. I also coded twice during this procedure, which assisted in the SCAD diagnosis.

I do not remember meeting the Surgeon, or discussing my need of open-heart surgery to fix the artery dissections or I would likely die. Prior to surgery I was placed on an ECMO machine (Extracorporeal Membrane Oxygenation, life support machine) to rest my heart and is required for a CABG procedure. Surgery begins with harvesting the blood vessels that will become the grafts. The saphenous vein in the leg is commonly used because it is long enough to create multiple grafts. If the saphenous vein cannot be used, vessels from the arm can be used instead. I had four cuts from this surgery looking for veins that could be used in the repair of my heart. The inside of each lower leg (left was a full cut and the right only a partial), left leg upper thigh near groin, and right forearm – which was the only successful vein source from these four cuts. Another artery was taken from my left chest near the shoulder area. (The left internal mammary artery is for a single graft and is taken once the chest is opened for surgery.) Following surgery, I was kept in a medically induced coma for three days to let my body rest and recover. My legs were so swollen and bloated that when I moved from ICU and had my weight taken, it was noted at 60 pounds more than my admission weight.

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Matters of the Heart continued

There are typical pros and cons of having a patient on the ECMO, for me it was a need to rest my heart muscle and reduce the damage that the dissected arteries were causing. Pros include the Surgeon can operate more quickly because the heart is still; very little blood makes surgery faster; and appropriate for unstable patients (which I truly was.) The Cons include Increased inflammation/clotting after surgery; transfusion more likely after surgery and with off-pump; more fluid retention (huge for me!); higher risk of kidney damage; longer hospital stay (8 weeks for me); and increased risk of stroke I remember waking up at times after the surgery to having my family close by. My husband kept saying that I came through my open-heart surgery just fine, I sure did not feel fine! All I could think of was not agreeing to this type of surgery and angry that I was still living and now had to live through this pain and recovery! I remember parts of my surgery from floating above the table and watching the staff work. I also clearly remember my chest being opened and seeing how horrible that was.

During surgery I was drifting off and not wanting to come back, so perhaps that is why I was so angry when I woke up and was still alive. My friend told me later, that she was continually needing to pull me back and it was hard at times but she kept trying. I was very blessed to have so many people praying for me and sending love that that is likely what kept me coming back.

I really wanted the breathing tube removed and the days following surgery were a blur. I was encouraged to move by nursing staff and then physio after a week. I was so big and so heavy. My legs were not mine; they were huge and bloated requiring one person to lift each leg! When the breathing tube was finally removed 8 days after surgery, I was not able to breathe on my own and an required an emergency Tracheotomy while I was awake.

Again, I felt totally abandoned by God, and my children saw one more cut from a surgeon that I would have to recover from. Main lines are used for IV drugs in the ICU and I had to have mine changed more than once which included a process to suture them in place.

The move from ICU to the Cardiac floor after 13 days was a huge wake up call for me, going from individual care to an eight to one ratio, the nurse still being the one. This is where all patients and families need to truly be aware of patient advocacy. The initial room I was moved to was so packed, and was like being on a busy city street.

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Matters of the Heart continued

There was no opportunity for rest, as the volume of activity from the other patients in their own state of recovery, staff movement to an in-room nursing station, one bathroom for 20 patients, and lack of time from the nurses due to their large volume of patient load made my care almost non-existent. I was still not able to talk with the Tracheotomy in place, unable to get up from bed without assistance due to my weak state and the size of my legs. I was subject to not only no staff attention, but abuse from another patient in the room, my bed constantly being knocked by just the lack of space and movement in the room.

Physio came once a day, Monday to Friday only, and left instructions that I was to walk three additional times in the day. The staff had no time to assist me, it was my family that got me up as instructed, and ensured I completed the prescribed movement to regain my strength.

To this day I am thankful for my son just placing his hand on my lower back while I struggled to walk and telling me he was there to catch me! It was also my family that lobbied for my movement to a quieter room placement, which at least allowed me to sleep and rest.

Also, recovering from such a severe heart incident, and being so weak, my body began to reject drugs or display reactions to everything from medication treatment, to the cleaning supplies by staff. My staples for my legs and arm were not removed until my family demanded they be taken out, and this was on day 20 after surgery, the Surgeon had forgotten.

This was a very painful process to remove over 150 staples at this late stage. My hospital stay lasted for over 8 weeks, it was very important for my family to stay on top of every detail of my care, as things get lost and forgotten.

Surgeons also leave many patients’ care tasks to their assigned Resident, and mine was even less prepared for patient care than the Surgeon himself. The removal of my Trach resulted in a hole in my throat larger than a Twoonie coin, and there was discussion to stitch it closed until a family member, a practicing General Practitioner, stopped them.

To this day I have a horrible scar that I am extremely conscious of. The added issue of being in a tight space with other patients, is the risk of infection. I did get the Foothills Hospital superbug, and this required that my chest incision be opened to remove the infected area, leaving an open wound on my chest, 4 cm wide and 7 cm long, just above my breasts.

A VAC dressing was applied to assist with the closing and healing of this wound, causing unbelievable pain and discomfort. It was again my GP family member demanding the removal of this dressing as it was causing more harm than good. To this day I have another huge scar on my chest above my heart surgery incision that I have changed my entire wardrobe to hide.

The trauma of this entire incident was not considered a reason for a Physiological assessment and support by the Surgeon. It was myself and my family forcing this request that finally resulted in the engagement of services from the hospital Physiological team. I was told after 8 months of their care, had they not been engaged while I was in hospital, I would have waited over a year to receive a referral.

My last week of hospital stay was a transfer back to my rural community. Because of the small number of patients, the staff are more available, caring, and attentive. The Hospital Physio was twice a day, and with my own strength building,

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Matters of the Heart continued I was able to walk, plus the area was not as cramped with patients and staff. This Physio assistance was my best source of recovery, as the support beginning in the hospital allowed a continued out-patient treatment for 6 months following my release from hospital. I worked hard myself to gain strength, but the safe support from the Physio team was a key element which continued to gently push me to recovery.

Ensuring that the correct home aids are in place is essential, but also having self care, either family or paid, plus food resources are extremely valuable. I was fortunate to have many of these in place when I was released from the Hospital. Our community pharmacy, and home nursing visits were set up prior to my leaving the Hospital, and I always recommend these be in place for anyone.

My husband cooks, shops for groceries, and was not at all put out with fully taking on this task, but it can be an issue for many. Anyone who has been a Caregiver/Mother must recognize, adjust, and be willing to put self-care first in a recovery, and I will be the first to tell you it is very difficult, and some, though they love you, will defiantly resist this change in you.

With my legs still being so large from the fluid retention, I needed to be careful with my diet and mindful of my eating, plus volume was still an issue as my appetite and taste had not fully returned. Doing my exercises and walking at home was easy for me as I had many resources in my home already, but these items can be borrowed or obtained inexpensively, as continuing to gain strength is an important component of healing and recovery. I mentioned my knowledge of alternative healing modalities prior to surgery, and while I did use these for myself, it was the lesson of positive thinking that truly brought me through this difficult recovery.

I was often advised to rely on the advice of my own GP and the Heart Surgeon, but this soon became another item that I had to manage on my own. While not told in these exact words, the message from the Surgeon was very clear at my first follow-up appointment. My heart had been fixed and I needed to stop complaining of everything else that was now wrong with me. He did not want to hear of my constant pain in all my incision sites. I needed to lose weight and exercise more to reduce the swelling in my legs, not a referral to a Vascular Surgeon.

My mental health was outside of his purview so he cared little that I was still having nightmares, and depression. While I was thankful to have the health care provide resources of a physical and physiological therapist, and a community nurse, the need to add my own healing needs was still there. I engaged alternative healing resources such as trauma therapy, acupuncture, essential oils, healing energy and reading any book or article suggested.

It is also important to emphasize the need to think of your own health care advocacy being in place while you are healthy and not in a position, or your loved ones being in a position, of making difficult decisions in the moment. Your own GP, Community Health Services divisions, Lawyers, etc., are available in every community, at a variety of cost/no cost options, that can assist with having the necessary discussions, and paperwork in place to support you. Take advantage of this as it is your greatest advocacy asset. I have had these difficult conversations with my loved ones, and engaged the professional services of a Lawyer to ensure my future wishes can always be clear.

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Matters of the Heart continued Since recovering now for over 4 years, I have been asked by many people what was my motivation to survive? I really have never had much of an answer as to a conscious decision to live. I remember not wanting anymore health related interventions that involved surgery, but I made a commitment to myself to get better, or as better as possible. I have achieved a more than expected level of recovery, but still not sure what helped me to survive until recently I read this on Facebook and it rather clicked for my reasoning.

“If you have tried everything and see no solution to your challenges, let go and trust the Universe.

When you loosen your grip on your life you allow the energy to flow unhindered.

What is meant for you will find you, if you allow it to.”

Taken from Readings by Mother Courage, Your Angels say, peroshini.com I believe now that I just handed everything over to God and the Universe and let them make the decision if I was to live or die. Being alive I have taken as a sign that I must do everything in my power to heal myself, mind, body, and spirit, and live each day doing so. The destination is being the most of myself, I have looked within myself to fully embrace I am more than a body with scars, pain and physical limitations. These are just the visible aspects, my most valuable assets are my invisible – courage, love, compassion, intelligence and intuition, the assets of my spirit. I am my joy, sorrow, and the pleasure of being loved and cared for with many family and friends. These supports with myself are the best advocacy toward healing.

Hazel, currently resides in Alberta, she is a wife, mother, and grandmother. She is retired and she says retirement is the best job she has ever had!

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Living Well HEART HEALTHY MIXED BEAN SALAD RECIPE Turn canned beans, lentils and chickpeas into a flavourful salad that will add a healthy boost to your meals. Perfect year-round, this fibre-rich salad is a great way of incorporating legumes into your diet. This can be served as a side dish, perfect for potlucks or to make it a main for lunch serve it over spiralized cucumbers.

PREP TIME: 5 minutes TOTAL TIME: 5 minutes INGREDIENTS 540 ml Bean Salad mix, rinsed and strained 1 tsp Honey ½ tsp Salt and pepper 2 tbsp White wine vinegar 1 tbsp Dijon mustard 3 tbsp Extra virgin olive oil 3 Garlic cloves, pressed 1/4 cup Red onion, chopped 1/2 cup Cilantro, chopped INSTRUCTIONS Rince and strain the legumes.

Place strained legumes in a salad bowl with onions and cilantro.

In a small bowl, whisk together the honey, salt, pepper, vinegar, mustard, olive oil and garlic.

Pour dressing over the legumes and mix.

Enjoy!

This salad tastes best if it has time to marinate in the fridge for a few hours before serving.

NUTRITION INFORMATION:

YIELD: 6 SERVING SIZE: 3/4 cup AMOUNT PER SERVING: CALORIES: 143TOTAL FAT: 10G SATURATED FAT: 1G TRANS FAT: 0G UNSATURATED FAT: 8g CHOLESTEROL: 0mg SODIUM: 259mg CARBOHYDRATES: 13g FIBER: 2g SUGAR: 8g PROTEIN: 2g

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Ask the Professional

In this issue, Maureen Carpenter, CD BSC, RN provides her insight.

What does it mean to Advocate for oneself or a patient?

Advocate- defined- is a verb- the act of promoting the interest of another person/group/or self (Webster’s Dictionary) A patient must advocate for themselves when they are unsure of a diagnosis meaning or explanation.

Treatment options or plans can often be overwhelming for a patient to understand.

Sometimes a patient may want a second opinion on a diagnosis or treatment plan to ensure they are going to proper course of action.

An advocate, other than the patient, can assume the same role and assist the patient as they navigate through the medical system.

How can a person be a better advocate?

Educating themselves on the disease, diagnosis, treatment options, etc. Determination is important when seeking out information and answers and to ensure the voice of the patient is heard.

It is important to remain flexible with the relayed options and or timelines as the patient and Health Care Professionals (HCP) work toward the goal of optimal health care. Compromise is a key component to ensuring all voices are heard and respected.

Maureen, is a BSC RN in Alberta. She has worked as an ICU/Emerg. Nurse in Edmonton, Medivac/Flight Nurse, in the NWT and currently works for the Dept. of National Defense in a Nursing Role. Maureen previously served our country in the Canadian Airforce, and NATO operations.

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Ask the Professional Maureen Carpenter, CD BSC, RN provides her insight.

Who can advocate for a patient?

Why should someone advocate?

The patient themselves are often the best at presenting their concerns or wishes but sometimes are unable to take that role.

Family members, loved ones, or close friends can advocate on behalf of the patient as long as that relationship is able to foster trust and openness.

To ensure a patient has an informed decision when the testing and treatments start to occur.

Advocating is a method to have the patient’s concerns or questions heard. For the patient to know what is next in the schedule and prepare for it.

A professional Health Care Provider can assume the role of advocate. Professions that may become patient advocates are Nurses, Social Workers, etc. Those in medical professions could understand medical terminology, explain test procedures and results and prepare patient for surgeries or other diagnostics.

Alleviate the stress and fear related to a diagnosis and what comes next. Importantly, the role of an advocate is to ensure the patients rights, health and safety are protected.

What areas can an Advocate assist in?

Pain Management Understanding Medical Terminology Booking Appointments Getting to Appointments Coordinating Care Identifying ADL’s (Aids to Daily Living) in recovery after treatments, surgeries etc.

Navigating Transitional Care Explaining Test procedures and Results Prepare patient for Treatments, Procedures, Surgeries

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Resources

Care partners Are you a care partner for a patient?

Visit our website for resources that can assist you in helping your patient with a better quality of life living with their diagnosis, and find resources that can assist you as a care partner.

Visit www.healcanada.org

Patient Advocacy Groups

Visit our website at www.healcanada.org for resources needed to help your advocacy group grow and assist your community

Stakeholder Resources Visit our website at www.healcanada.org for resources needed to help you in working with advocacy groups

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Join Heal Canada's Patient Advisory Council Be part of the Heal Canada Resource Advisory Council. Provide ongoing feedback on issues relevant to Patient Advocacy in Canada. We are looking for Patients, Care-partners, and General Advocates Send you information to: Admin@healcanada.org or visit our website and fill out our application form and find out more details about time commitment required.

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Share your Patient Journey Story with us!

Share your story with us! If you would like to share your story about your journey, as a patient, caregiver, or advocate, send us a short (150 words) description of your journey, for consideration in an upcoming issue! email your submission to: Healcanadamagazine@healcanada.org

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Join our Resource List Patient Advocacy Organization Registry Have your Patient Advocacy Organization listed with Heal Canada, so that Patients & their Carepartners can find you!

Send your coordinates to: admin@healcanada.org & we will add you to our Patient Advocacy Registry

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References 1. Canadian Organization of Rare Diseases. CORD. (n.d.). Retrieved September 12, 2023, from https://www.cord.org 2. Canadian Organization of Rare Diseases. CORD. (n.d.). Retrieved September 12, 2023, from https://www.cord.org 3. Canadian Organization of Rare Diseases. CORD. (n.d.). Retrieved September 12, 2023, from https://www.cord.org 4. Moyer, M. W. (2022, August 19). How to Cope With Fall Anxiety. The New York Times. https://www.nytimes.com/2022/08/18/well/mind/fall-autumn-anxiety.html 5.Moyer, M. W. (2022, August 19). How to Cope With Fall Anxiety. The New York Times. https://www.nytimes.com/2022/08/18/well/mind/fall-autumn-anxiety.html 6.Moyer, M. W. (2022, August 19). How to Cope With Fall Anxiety. The New York Times. https://www.nytimes.com/2022/08/18/well/mind/fall-autumn-anxiety.htmlEmotionalAgility, Susan David, 7. Dr. Tracy Dennis-Tiwary: Encore | Can Anxiety Be Good For Us? - House Calls Podcast.

(2023, September 19). Www.hhs.gov. https://www.hhs.gov/surgeongeneral/priorities/house-calls/ dr-tracy-dennis-tiwary-encore/index.html 8.World Health Organization. (2022). Physical Activity. World Health Organization; World Health Organization. https://www.who.int/news-room/fact-sheets/detail/physical-activity

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