Every 6 months we go to Transplant Clinic with my son, for
his semi-annual “tire kick.” Of the
seemingly endless number of appointments we endure, this
one is one of my favourites. Not that we like clinic visits, this is just one that is much more enjoyable. Why is that?
One unique feature of having a kid with a heart transplant is that
your treatment is rather unique and that there are very few of us (probably only about 20 pediatric patients in the province.)
To make everyone’s life a little easier, Transplant Clinic usually involves bringing the transplant families in on the same day. We get the pleasure of meeting many of these unique families. The waiting is made much more enjoyable as we get to know these people on a more personal level. These are families who I know share a story similar to ours and who I know have been put through unimaginable horrors. Most of us still have difficulty talking about our experiences without showing the frustration, fear, anger, joy, and depression that comes with complex medical journeys. These people have my unending respect. In addition, these are true health care experts who have extensive lived experience. Their experience is much more compelling than any research study or "key metric" the health care system can conjure up. They are also a group of people I will defend with every breath in my body or keystroke from my fingers.
To make everyone’s life a little easier, Transplant Clinic usually involves bringing the transplant families in on the same day. We get the pleasure of meeting many of these unique families. The waiting is made much more enjoyable as we get to know these people on a more personal level. These are families who I know share a story similar to ours and who I know have been put through unimaginable horrors. Most of us still have difficulty talking about our experiences without showing the frustration, fear, anger, joy, and depression that comes with complex medical journeys. These people have my unending respect. In addition, these are true health care experts who have extensive lived experience. Their experience is much more compelling than any research study or "key metric" the health care system can conjure up. They are also a group of people I will defend with every breath in my body or keystroke from my fingers.
 |
| Photo Courtesy Health Sciences Centre, Winnipeg MB |
These were the families who were on my mind as I sat in the
4th floor Boardroom of the corporate offices of the Winnipeg
Regional Health Authority (WRHA). In this meeting, the Executive and Board discussed the plan ( http://healingourhealthsystem.ca/ ) to change
the direction of health care in our city.
This was the plan that was made public yesterday by our Board Chair and
CEO. I had studied the plan for several
weeks and I am well aware of the impact this direction may have on many
families just like mine. As was made
public in the press release the vote from the board was unanimous. So it doesn’t take a detective to figure out
that I voted in favour of this plan. A
plan that will force many difficult changes in the health care system in
Winnipeg.
Last Tuesday night, after the vote, I spent a very sleepless
night thinking about my decision. I guess we all have moments when we second guess ourselves. I wasn't second guessing the plan. I think the changes identified in the plan are solid and long overdue. The implementation is what gives me pause. This is not a minor tweak to the system. This is large scale change that will effect patients and providers alike. Change is never easy. Then I thought of the families I see every six months at Transplant Clinic. What would they think? Then I thought of the staff who we work with on an ongoing basis. Might some of them chose to retire rather than go through significant change in their job? These are momentous changes with many consequences. I don't believe the changes will stop there. This is a first step. I also believe our transplant families may understand this plan better than most. They understand the impact of consolidation. Especially pediatric cardiac families. I think once the plan is explained without all of the political hyperbole, this plan will make sense to them. Regardless, I am always willing to listen to their concerns. I may get an ear full at our next Transplant Clinic.
In all of this change what I think is truly unique is that a caregiver...a patient family was given a voice at the decision making table. It is a very different role to go from sharing your story at a conference or in a classroom - to sharing your opinion when health care policy is being deliberated. When I share our story at a meeting or as part of a patient advisory group there is no risk for me. I can quite literally share anything I want to. I share positives and I also share negatives. No one objects when I am critical of health care in that environment. I am just a parent sharing a "feel good" story and when I leave, the "adults" can go back to making the "adult" decisions of health care. My presence is quickly forgotten. I have no authority there.
It is a much different experience being a board member where you get a chance to be a decision maker. Questions posed to executives must be addressed as we provide oversight to the management of the Health Region. This role cannot be taken lightly. It's also unique that an end user of the system is able to question health care managers with lived experience. Reality is sometimes a bitter pill to swallow. However, I also have to realise that I have much to learn as well. The most significant lesson I have learned being on the administrative side of the table is that many leaders in health care - the people we all like to criticise - are in reality very caring people who want the health care system to improve. They have very sincere intentions but they just work in a very convoluted management structure where change is nearly impossible. I have gained a great deal of respect for everyone working in health care. They also need our help. They need to see health care through the eyes of us who live the system on a daily basis.
Change is happening in Winnipeg. Some patients and caregivers have and will be given some input to the process. That input needs to be expanded. I sincerely wish other caregivers and patients would take leadership roles in health care. I hope that we can create many opportunities for families to give their input, especially in a time of significant change in health care. I hope families like the one's I see every 6 months at Transplant clinic, get an opportunity to influence decisions though lived experience. These are the true patient experts and they have a lot to offer.
It is a much different experience being a board member where you get a chance to be a decision maker. Questions posed to executives must be addressed as we provide oversight to the management of the Health Region. This role cannot be taken lightly. It's also unique that an end user of the system is able to question health care managers with lived experience. Reality is sometimes a bitter pill to swallow. However, I also have to realise that I have much to learn as well. The most significant lesson I have learned being on the administrative side of the table is that many leaders in health care - the people we all like to criticise - are in reality very caring people who want the health care system to improve. They have very sincere intentions but they just work in a very convoluted management structure where change is nearly impossible. I have gained a great deal of respect for everyone working in health care. They also need our help. They need to see health care through the eyes of us who live the system on a daily basis.
Change is happening in Winnipeg. Some patients and caregivers have and will be given some input to the process. That input needs to be expanded. I sincerely wish other caregivers and patients would take leadership roles in health care. I hope that we can create many opportunities for families to give their input, especially in a time of significant change in health care. I hope families like the one's I see every 6 months at Transplant clinic, get an opportunity to influence decisions though lived experience. These are the true patient experts and they have a lot to offer.
No comments:
Post a Comment