A Patient’s Perspective for 2021-2022
February 15, 2021
Connecting the Dots
Since the beginning of the year, I have had the opportunity to advocate many groups of executives including the Durham OHT, the Durham COVID Partner Committee, Lakeridge Health CIS Team, the Ontario Caregiver Organization, Primary Care 2025 Thought Leaders, Ontario Health PFAC, Ontario Health Primary Care Quality Committee, Ontario MD, CDHE/WIHV/PAN and have listened to many webinars from Primary Care Networks, OHT/RISE, the PGLO and read industry articles from STAT, the Healthy debate and LinkedIn. This has given me a very comprehensive, yet the fragmented view of our healthcare system in transition.
Healthcare can be and should be, a relationship from birth to death and our perception of it usually is “when we need it” rather than planning for it. I have taken the time to look back and document the major elements of my own journey and knowledge level and I can assure you that in my early years, healthcare was something only recognized as an urgent situation or something was broken and no understanding about prevention, healthcare, or lifestyle. As we grow older in age and have relationships with dependents, the need for literacy becomes apparent such as tests and physicals to get married, birth of children and grandkids and periodically, when something goes wrong.
And then, this morning, my phone app for Medisafe went off as a reminder to “take your meds on time” and I realized, I was still in that period of life “when something goes wrong.” The rest of this article is to look at my personal experience both over the last 20 months and see how the health and healthcare system impacts a patient and their caregiver (Jan, my partner) 24/7 and demonstrate that we can have a comprehensive, team-based system in a continuum of care if we can establish relationships and shed the barriers of transition from sector to sector.
Isn’t this the promise of an Ontario Health Team (OHT)?
“When Something Goes Wrong” – A Snapshot of My Lived Experience
- In June 2019, I booked an appointment with my physician as a regular session and had my list of 6 items to discuss. Blood tests revealed a significant drop in blood cells and became urgent with a referral to the Durham Region Cancer Centre. After several months of extensive diagnosis and treatments, I was connected to Princess Margaret Hospital and diagnosed with high-risk MDS via DNA regression/genome panelling. A stem cell/bone marrow transplant (BMT) was the only option and on March 13, I received my diagnosis…and COVID hit. I had a confirmed donor in Europe but lost this opportunity and had to wait until July for another donor and finally had the transplant on July 16. It is a “miracle of healthcare” that I received over 800M stem cells from a donor in Europe and they are growing. I am now 7 months post and my story will continue. The key point for you is that my Primary Care physician started the process and followed me for the past 20 months as I was transitioned to the various Patient Medical Neighbourhoods (PMN) and today, am under joint care from Princess Margaret Hospital BMT team and my local physician. All teams are incredible, and I will get back fully into my Patient Medical Home (PMH). My story is one of optimism in that I have learned that my family’s relationship with my Healthcare teams is equal to any relationship I have, even for non-critical issues like vaccinations, check-ups, tests as we age (and should be from birth). Now, the digital side needs a lot of work…but that discussion is for another day. I have seen so many transitions, hand-offs, and discharges that I know what continuity of care is and where those challenges for change exist and have a vision of end-to-end use of digital tools and patient information.
- As I went through this journey, it took 10 months from June 2019 to March 2020 to diagnose and prepare for my BMT. This included 79 medical appointments and tests as I was moved and transitioned to the needed expertise. On July 10, I was admitted for the BMT and spent 5 weeks receiving conditioning with chemo and radiation and the actual BMT transplant. I was discharged home but re-admitted two days later with complications through the emergency department. I have been home since September and have recovered my ADLs and am progressing with “two steps forward and one step back” each day. It will take two years to fully recover and next week, I receive doses of leukocyte cells (up to 1B) from my donor in Europe to continue my progression. My surgeon reminds me that I am not a “day trader” and that we need to look to the long term. As I transition back home, I am also receiving two years of vaccinations to restore my immune system. I believe I am doing well.
- My Home Medical Team is in Pickering and is a capitated FHO with 7 physicians, a physician assistant, nurses, admin staff and an attached compound pharmacy and have reached to community services and specialists as needed. Lakeridge Health is my community hospital and I have received exceptional service in my community.
- My Princess Margaret Medical Neighbourhood Team is at UHN and includes a lead surgeon/physician/nurse practitioner, specialists and ologists (cardiac, respiratory, DVT, infection control, nephrologist, allied professionals, pharmacist, H& C, social worker, nutritionists) and an array of frontline staff. In addition, I have been scoped, scanned, x-rayed, blood tested including 7 bone marrow biopsies and more to come. I currently have 5 separate portals of information and 6 apps that I use to try and keep coordinated and MS excel spreadsheets are my saviours as the information simply does not flow to me in a comprehensive fashion. The teams are all exceptional and special mention to the nurses and teams who worked 12-hour shifts 24/7 during 8 weeks of hospitalization.
- My last point is that my experience plays side by side with my partner, Jan, known as a caregiver to the medical community. She and I are both clients of our Primary Care Team and every physician/nurse practitioner on this vast team has allowed her participation in calls and visits we determine necessary, including 30+ virtual calls since July with all modalities. She is known as “an essential caregiver”.
- I want to push the system to recognize the fundamental value and relationship between us, the families, and our local Primary Care and Healthcare teams. We can build hubs around the neighbourhood for any service, including hospital, when needed but it starts at home with Primary Care. There is no other organization that has access to families for their health and healthcare plans and the goal of 100% for all patients to be rostered should be at the centre of the Ontario Health and OMA messaging. This is inclusive for those that can develop the relationships as well as using the Primary Care teams to outreach into marginalized communities.
So, Here Are My Key Thoughts for Each of You!
- Each of you on this distribution list owns a piece of my story but it is difficult to find a group who would own my complete experience. I honestly believe this is the goal of OHTs and will push towards this objective, but I encourage each sector/area to ensure you look at the responsibilities you have and extend your reach to a complete health and healthcare system.
- The Patient Medical Home (PMH) and the Patient Medical Neighbourhood (PMN) are at the centre of healthcare and Primary Care anchors these relationships.
- From a healthcare clinical perspective, I am an event that can be fixed (stitches, casts, atrial flutter, melanomas etc.) or maintained (DVTs) but seldom does any service provider have my total lived experience. With my own advocacy and literacy, I can turn this into relationships with my providers and care for me as a person over my life span…and be involved in shared decision-making, relationship building and patient choice for whatever is necessary. It starts with my Primary Care team.
- Seldom, does the current system look backward to see where you have come from, especially with any discussion on social-economic factors…but these play into a literacy level and have a huge impact on our healthcare both personally (lifestyle) and clinically (a plan).
- We are constantly hit with clinical fixes that see a disease or condition and all attempts are made trying to fix that condition…many times at odds with the history of the patient. Complexity (co-morbidities) become difficult to diagnose and the system tends to push us around known as “discharges and transitions.”
- Most of the time, we (family members) do not think of ourselves or label ourselves as patients, but we move through life trying to resolve any healthcare issue as needed. This is so true of the terms caregiver and patient where the system has decided that we need to label the family member and try and put supports in place specific to them, usually revolving around a disease (cancer, ALZ, cardiac/respiratory issues) and not the family lived experience including our social determinants of where and how we live.
- We tend to stumble from being healthy to having difficulty as we age but do not take the time to develop our own literacy and build a healthcare personalized plan that helps prepare a family for the end of their journey. Self-management, lifestyle choices, building relationships are all equal to have clinical healthcare supports available.
As a patient advocate, I will be a thought leader and an example of what can be and engage both my local community (Durham OHT) and the broader Provincial tables to drive home the importance of this relationship as a foundation of any successful OHT both during COVID and post COVID. We simply cannot go back to where we were.
Pickering Resident and Healthcare Advocate
1050 Rouge Valley Drive