Chrystal Désilets is a matriarch from the Algonquins of Pikwàkanagàn First Nation, full-spectrum doula, and community healer and co-founder of Aunties on the Road Doula Collective (reproductive health), Thunderbird Sisters Collective (Art & Healing in Community) and Counselling Collective.
Chrystal is a healing and wellness counsellor with a sociology degree. The majority of her work experience has been in front-line crisis intervention and trauma-informed care roles. Counselling and facilitating healing circles, which include traditional healing and ancestral plant medicines, have dominated her heart work in recent years.
An Indigenous Storyteller and Seedkeeper, Chrystal is a mother of teens, each with unique health challenges that have meant emergency room visits and specialist appointments. She has lived-experience navigating and accessing support, health care, and healing for herself and her family. She carries the strength of her ancestors and resides on her traditional territory.
"I am especially passionate about supporting caregivers. The likelihood of the patient and family overcoming experiences of crisis and trauma often comes down to the coping skills of the caregiver. As a society, we rarely discuss the challenges associated with navigating health systems, the need for caregiver support, or the toll suppressed grief and fear can take on one's mental health."
Michèle Le Saux
Trained as an engineer and working in the space industry, Michèle Le Saux grew up in north-western Ontario and has lived in south-western Ontario, and the Ottawa area. She has also lived in a number of countries in Europe and Africa. Michèle has seen various health-care models. She has experienced the health system through her parents’ care as seniors and with dementia. She has also seen issues regarding accessibility to mental health services for youth.
Michèle is interested in youth mental health, addictions and teen suicide prevention. If addressed early, the outcomes can be positive. Untreated, these challenges can lead to a myriad of social, medical and legal issues. Michèle views her participation on the Champlain LHIN Patient and Family Advisory Committee as an opportunity to shed light on mental health issues faced by youth, especially in terms of wait times and accessibility to appropriate services.
Michèle hopes her experience with complex engineering systems is useful in structuring efforts to improve health services. More than a funding issue, it is about the way care is organized, and how patients are routed through the system. Michèle is a strong believer in researching best practices and collecting solid data on which informed decisions can be made.
"I will advocate for more and better mental health services for youth that are easy to find for anyone looking for them. I also hope we start to consider a more innovative and holistic approach to mental health - addressing mind, body and soul and involving families, schools, community and health-care providers."
Cathy Doolan is a former public service human rights lawyer who spent many years acting as the sole caregiver for her mother. Cathy’s mom suffered from multiple complex conditions, but desperately wanted to stay in her own home.
Cathy was extremely impressed with the excellent care provided by Centretown Community Health Centre and served as a board member there for six years. However, the home care services that she and her mother received were not as satisfying. Cathy says there were recurring scheduling problems, and many of the personal support workers she and her mom interacted with were not properly trained.
Through the experience with her mother, Cathy has become passionate about the delivery of health and home care services. She advocates on behalf of family and friends who are navigating the system. While they speak highly of the dedicated and caring health professionals they deal with, they also expressed the need for improved patient-centered care, and more support for caregivers.
As a member of the Champlain LHIN Patient and Family Advisory Committee, Cathy wants to identify ways to improve consistency and reliability of home care for seniors, and ensure a more coordinated patient and caregiver experience across the health care system - particularly for those who are vulnerable and have high-needs.
"We are witnessing a significant transformation of the Ontario health care system with the passage of the Patients First Act, 2016, and changes in the delivery of home care services. I look forward to working with my fellow committee members to provide the LHIN with strategies and practical ideas for improving patient and home care as well as support for caregivers."
Sharon Haig works full-time and is the primary caregiver for her husband, who has Huntington disease. She is also a caregiver for her elderly father, who was diagnosed with colon cancer in early 2017. He requires care for a permanent ileostomy. Sharon describes the responsibilities of a caregiver as being a doctor, psychologist, social worker, financial planner, nutritionist, cook, housekeeper, chauffeur, nurse, computer-repair person, lawyer, and many more responsibilities.
Sharon says looking after her husband is overwhelming at times. Add caring for her father, work and other commitments, there are days when she simply has no energy left. She depends on the health care system. She relies on help and support from doctors, Champlain LHIN providers, and supply companies to provide her loved ones with their daily medical needs.
Sharon joined the Champlain LHIN Patient and Family Advisory Committee to bring feedback and suggestions from the caregiver community directly to the LHIN. She wants to ensure that the health care system is financially sustainable to provide services for those in need of assistance through to their elder years.
“I hope to continue work to with the Champlain LHIN to reduce the inefficiencies and cost of the health system, and raise problems regarding specific health issues such as Huntington Disease. It is important to ensure that these services will be around for all of us one day; and they should be easily accessible.”
Anita Manley is a well-known mental health advocate, peer facilitator and patient advisor throughout Ottawa and the province. In 2015, Anita was awarded The Royal’s Inspiration Award for her advocacy work to reduce the stigma of mental illness. Anita is all too familiar with that stigma: she spent three years homeless and alone, estranged from her family and friends because of the delusions she experienced from a schizo-affective bipolar disorder. Eventually, she found the excellent care she needed at The Royal Ottawa Mental Health Care Centre.
Anita has been in recovery since January 2012. She has reconnected with some friends, her daughter, and extended family, and made many new friends. For the past three years, she has been in a loving and mutually supportive relationship with her partner. She has also been working to help others.
Anita’s top priorities as a member of the Champlain LHIN Patient and Family Advisory Committee are to bring forward the voices of people living with Borderline Personality Disorder, and help reduce repeat emergency room visits among people with mental-health and substance use issues.
"I want to a strong voice on this committee for mental health and substance-use disorders. I am an expert on my own mental health. I know what I need to stay well, and I have insight how to help others achieve wellness."
See a short video about Anita.
In 1992, Claude Paquette's wife was diagnosed with cancer. After an 18-month battle, she passed away. This loss left Claude to raise two young children on his own. Today, he cares for his 98-year old mother, who lives in a long-term care home. These experiences taught Claude about the importance of a health care system that responds to patient needs, in hospital and in the community.
Additionally, Claude's professional life gave him some unique perspectives on the Ontario system: he spent 30 years as an executive for an American high-tech company. The job took Claude around the world, and allowed him to meet and collaborate with a variety of people and cultures. It also gave him the opportunity to observe other health care systems - he says ours stacks up very well.
As a “tech guy”, it is clear to Claude the many benefits technology has brought to health care. One of his priorities serving on the Champlain LHIN Patient and Family Advisory Committee is to see those benefits maximized, while still respecting the importance of personal, human communication between patients, families, and service providers.
"I am very proud of our health care system. It is not perfect, but it is by far superior to many other countries. My goal in contributing my time as a volunteer is to ensure we do not lose the quality and benefits we have, while seeking ways to improve the system."
Stephanie Paravan and her husband are parents to two boys. In 2013, at the age of six, her son became inexplicably ill. He had an undiagnosed neurological seizure disorder that became progressively worse. The condition eventually resulted in her son becoming non-verbal, wheelchair-bound, gastrostomy-tube-fed, and dependent on multiple medications for his daily survival.
Seemingly overnight, Stephanie's world became hospital appointments and admissions, including being at her son’s bedside during an 18-month stay at the Children’s Hospital of Eastern Ontario in Ottawa, and in Toronto at the Hospital for Sick Children and Holland Bloorview Kids Rehabilitation Hospital. To become a full-time caregiver, therapist, and medical coordinator, she had to leave her job as an educational assistant. One of the many things she learned is what it's like trying to maintain a sense of normalcy in a life that is anything but.
Stephanie says she is excited to be a member of the Champlain LHIN Patient and Family Advisory Committee where she hopes to contribute using her experience and perspective. Specifically, she wants to ensure policy and system decisions being made in the LHIN include the needs of children and youth, particularly those who require extensive support, in hospital or at home.
"I hope to raise awareness about the unique needs of each individual patient and family, as well as the importance of flexibility in programming to properly support medically fragile and complex patients as well as their caregivers."
Joanne Robinson and her spouse are parents of two young adults. Born in Ottawa to Jamaican parents, Joanne has been a caregiver to her aging parents and aunt.
Being a caregiver has given her better insight into the health care system. As a dedicated advocate for seniors in her community, Joanne also shares her health-system knowledge with those in need. For example, to raise awareness of and avoid elder abuse, Joanne was instrumental in planning and hosting information sessions for Ottawa’s Caribbean community.
Joanne has served her community in many roles, including president of the Jamaican Ottawa Community Association, coordinator with Black History Ottawa, and volunteer with the Community Police Action Committee.
In partnership with the Jamaican Ottawa Community Association and Jaku Konbit (an organization that aims protect and promote the African cultural identity), Joanne played an important role in the development of the Under the Mango Tree program. The program supports African and Caribbean traditions of storytelling, the value of and respect for elders, and provides seniors with a platform to share their stories with children and youth.
Joanne is past board member and currently an active member of Jaku Konbit. She is also a member of the National Institute of Jamaican-Canadians, and a long-standing volunteer with the City of Ottawa.
In recognition for her work in the community, she has received Ontario’s Ministry of Citizenship and Immigration Volunteer Service Award, the Ontario150 Community Service Award, and Black History Ottawa’s Dream Keepers Citation for Outstanding Leadership.
“I look forward to working with the Champlain LHIN and members of this committee to ensure the voice of diversity is heard and the health needs of all of our communities are met.”
Doreen Rocque feels she has spent her whole life caring for people, and it is a call she has always been proud to answer: her mother and aunt lived together in the final years of their lives, first in independent housing, and then in long-term care. Doreen was the person they turned to while facing any challenges.
At the same time, Doreen's husband was diagnosed with Parkinson's disease. He stayed at home as long as he could, and eventually had to move to the Perley and Rideau Veterans’ Health Centre (Perley). Through all of that, until the day he died, Doreen was there for him.
Doreen now pours all of her energy into helping people get the care they need. She is a member of the Family and Friends Council at the Perley. In 2010, she was elected to the Champlain Region Family Council Network Executive Committee, which advocates for the needs, rights and interests of residents living in long-term care homes. In 2014, she was elected Chair of its Executive Committee.
She also sits on the LHIN’s Emergency Department / Alternate Level of Care Steering Committee, LHIN Long-Term Care Advisory Committee, and Champlain Dementia Network Steering Committee. Most recently, she became a member of the Champlain LHIN Patient and Family Advisory Committee.
"I've been a caregiver since the time I was born. It started with small animals, and then moved on to people. My work on the Champlain LHIN Patient and Family Advisory Committee is just an extension of that, and I am very much looking forward to it."
Kelsey Lett knows what it is like to be a patient completely dependent on the health care system. Diagnosed as the age of two, Kelsey is now a young woman battling Cystic Fibrosis. She is very happy to say that both her sisters are very healthy.
Each day is different, she could wake up feeling she can conquer the world, while other days just getting out of bed to have a shower is a task or dealing with the stress and mental anguish that comes with being sick. This is also hard on her family and her partner as well.
Homecare has become a huge part of Kelsey’s life. Kelsey sees someone at least once monthly for the regular visits required to help her manage the disease. A couple of times a year, she also requires intensive sessions of intravenous antibiotics. During these sessions, a nurse sees her daily for several weeks, checking her heart and lungs and re-programming her intravenous pump.
Kelsey’s lifetime of interacting with the health system has taught her that there are ways to improve it. For example, she points to an occasional lack of communications among providers, caregivers and patients - which can be confusing for providers, stressful for caregivers, and deeply frustrating for patients.
She talks about the stress of medications not being delivered to her home on time, and the awkwardness of being assigned new nurses who do not know her and are unfamiliar with her file. Kelsey continues to advocate and work to build stronger relationships between healthcare providers and patients. As a member of the Champlain LHIN Patient and Family Advisory Committee, these are some of the issues she hopes to address.
"I joined the Patient and Family Advisory Committee to help improve everyone's home care experience—patients, caregivers, and the health care professionals who deliver the care. I would like to see all of us work better together to make positive change happen."
Roger Pharand has experienced the highs and lows of being a patient interacting with the health care system. Ten years ago, he was diagnosed with type 2 diabetes. His primary care physician referred him to the Winchester Memorial Hospital Diabetes Education Team. The team taught him how to cope, and what to do to manage his disease. Just as important, they taught him how well the system can work when primary care physicians and specialists work together in the interests of the patient.
Seven years ago, Roger learned a different lesson. He was in the operating theatre for what he was told was a routine angiogram - he suffered a stroke. At the time, the lack of communication among the various doctors and specialists caring for him was frightening, and almost cost him his life.
Since that time, his message to health care providers has been all about putting patients first. “Communicate well, and take charge because it’s my health” became his mantra. This is a philosophy he wants to bring to the Champlain LHIN Patient and Family Advisory Committee.
"If there is a single thing I hope to achieve, it is a well-rounded communication process in health care that puts the patient and primary care provider in the middle of the circle of care, while the specialists around that circle feed and share all their information into the centre of care in the best interests of the patient."