Worrying about my future

Sharon Noseworthy had to leave her career as a Human Resource Counsellor due to retinal disease. Currently, she advocates for support and rehabilitation services for Canadians with vision loss, hoping to stop unnecessary hardships. Sharon has also written a compelling piece, Fear, about dealing with Polypoidal Choroidal Vasculopathy on the MD Support website.

I have an incurable, untreatable chronic illness, a retinal disease. Despite long wait times for appointments, hours spent in the waiting room and too little time with the doctor resulting in no time for questions, I believe my eyes receive excellent care. I did worry about the cost of the expensive drugs used to treat the eye. I was already spending thousands of dollars on tools to assist with daily living. 

To date, no treatment, no drug has helped. I recall the day the retinal specialist said, “We are sorry but there is nothing further we can do for you.” I understand that there is nothing that can be done to treat the eyes, but what about me! 

There was, and is, no offer of rehabilitation, no offer of counselling, no evaluation of my needs and arrangement for required services. I left the clinic feeling helpless and hopeless. I went home not knowing how to deal with living with low vision. With no continuum of care, my health has deteriorated. I became acutely ill.

My family doctor monitors my health, including side effects from vision loss. With, or without reports, she provides excellent care. The retinal disease is still active so specialists continue to monitor my eyes. However, what I truly need are comprehensive vision loss rehab services. These services do not exist. As a result, I am not able to live independently. I worry about my future. Will I, like so many others, have to prematurely enter a retirement or nursing home?

In search of support: the importance of communication in the heath care system

 

Daniel Stolfi is an actor, writer and producer and currently resides in Toronto, Ontario.  Daniel took his two-year battle with cancer and turned it into the heartwarming and hilarious one person comedy show, "Cancer Can't Dance Like This."  Daniel has shared his story all over Canada and has helped raise over $75,000 for cancer-related charities across the country.  "Cancer Can't Dance Like This" recently won the 2011 Canadian Comedy Award for best one-person show. 

 In March of 2008, I was diagnosed with Acute Non-Hodgkin’s T-Lymphoblastic Lymphoma.   An aggressive tumour was growing rapidly over my heart and if treatment wasn’t started immediately, this grapefruit-sized mass would end my life in a matter of weeks.  I was just 25 years old and had my whole life to live.   
During my two-year chemotherapy protocol, I was challenged to navigate my way through a complex world that was the Canadian health care system.   I struggled to find support from my peers in the young adult stages of life.   I became very vocal about my need for support and was eventually able to convince my doctors to introduce me to another patient around my age who was going through the same thing as me.  After eight months of treatment, I was finally introduced to a 22-year old young adult named Ari.  He was in the midst of completing the exact same protocol as I was, and through this commonality of experiences we provided each other with support to get ourselves through the remaining 60-plus weeks of chemotherapy.   Through patient interaction, engagement and overall communication with my health team, I was able to get what I truly needed to help make my journey a success.   

Unfortunately, this process of finding support took much longer than it should have.  Some patients never get that support because it isn’t made clear to them where they can find it.  Communication between patients and health care providers is a simple solution to creating a more empowering journey for any patient.

Time is of the essence (or, don’t put off today what you can’t do tomorrow)

A recent CBC article discusses the meeting of Health Minister Leona Aglukkaq and provincial health ministers on November 24 - 25, and the potential for preliminary discourse on a new health accord for 2014. More than once the article mentions that there is still time for these discussions in advance of the 2004 accord expiry in 2014.  However, given that the article further mentions the need to review the Canadian Health Transfer funding model, fundamental reforms to current health care delivery, and the “crisis-fuelled negotiation…conducted earlier this decade” to devise the 2003 and 2004 health accords, “more than two years” doesn’t seem like nearly enough time.

Added to this are the arguments presented by André Picard in his article on the upcoming meeting of health ministers, wherein he discusses the need for revamped health financing.

These arguments are all valid in the context of a new or renewed health accord for 2014.  But time is of the essence.  Although simple enough to suggest how to reform health care in Canada, it is much more difficult to come up with reforms that are evidence-based and have buy-in from all stakeholders (that is, provinces, territories, the federal government, health care providers and the public). 

The National Healthcare Service (NHS) in England began consultations in 2007 for national reforms that culminated in the NHS Outcomes Framework that was first implemented in 2011.

In Australia, the Council of Australian Governments agreed to a reform agenda in 2007 that included reforms to health care.  The National Healthcare Agreement established in 2008 (revised in 2011) outlines specific goals for healthcare, and requires yearly performance reports on progress towards achieving these goals.

Given these two examples and the timelines for developing health care reform agendas, is two years enough time to fully hash out health care reform in Canada?  Serious discussions need to start now at all levels of government with expert and public consultation in order to develop well-planned strategies for health care reform in 2014.

Susan Brien, Policy Lead, Health Council of Canada

Key Words: Health Accord