How’s everybody doing? Things haven’t been easy for me lately. The last few months all I wanted to do is get on a plane and fly home to be with my family in Vancouver. You see a few months ago my mom took a fall and broke her pelvis. With COVID-19 and living in another province, this has made the ability to go home if I wanted to very complicated and that sucks! All of her care has had to be handled by my amazing sisters, and it bothers me that I can’t be there to do anything to help. I can be supportive from a distance but its still hard not to being able to do more than that. She’s been in great hands with my sisters though and honestly I can’t thank them enough for everything that they’ve been doing!

I don’t really think that it’s all that necessary to get into a lot of detail regarding my mom’s specific case. However, what fueled me more than anything to start writing this piece were some of the questions I have in regards to her hospital visits. Without a doubt the protocols that have been put into place have made receiving care in our ER’s different and at times difficult. So when someone goes to ER and ends up back at the hospital within a 48hr period, only to discover that her pelvis is broken in two places. I think its only natural that you start asking some questions as to why it was missed on that first visit. That’s not to say that it wasn’t legitimately missed the first time. Had my sisters been able to be there with her they might have been able to press for more answers. Maybe even ask about doing other tests like a CT scan. It might even be as simple as giving the physician a piece of information that might lead them to the diagnosis.

First of all let me say this. The dedication and service that our healthcare workers have been giving us through this pandemic has been amazing. Without them we don’t gain the upper hand on a pandemic like COVID19. We need to be grateful for the people who work in our hospitals and throughout the healthcare system. So in no way is anything that I’m saying meant to blame anyone. If anything they have been stretched too thin, and they are doing the best they can under the circumstances. What I am saying however is that we are facing some unique challenges, and I have some concerns and questions when it comes to the care we receive during a pandemic. I think most of you would agree that never having to go through anything like this, that we are all dealing with a very steep learning curve right now. Even being as far into the pandemic as we are.

One of the challenges we face with COVID19 is that as soon as a person needing care arrives at the hospital they virtually left are on their own. In my opinion, the difficulty with this is that in so many cases this creates a barrier in the level of care we receive. Think about it! A person arriving at the ER often comes with someone because they need that person to advocate for them for one reason or another. This might be a child who needs a parent because they don’t feel comfortable with being on their own, or that they might be unable to answer the questions medical staff are asking. It might be an elderly person who just doesn’t think to ask those questions that they need to. What really comes to mind however are those dealing with various forms of dementia or other more serious illnesses that require someone to assist or be with them.

The protocols that are being put in place with COVID-19 are adding all kinds of extra barriers. I understand why these protocols have to happen and I fully support them. However there’s still a very large problem that we need a solution to. What are the answers? I don’t know if that’s something that any one person can easily answer. There are so many factors are involved. Its a pretty helpless feeling when a loved one goes into the hospital and you have no ability to help them. Especially when you know they need help! For the caregivers involved there should be something put in place where they can at least pass on information to those involved with that persons care. There are too many cases happening where communication is a big problem! Moving forward I really believe this is an area of opportunity that we can work towards fixing.

With so many resources being focused towards COVID-19, there has certainly been a strain on the other areas of healthcare here in Canada that people need. As I said before none of this is being written in an effort to put blame on anyone in any way. The point I’m trying to make is that we need to improve in those areas where we are falling short and try and fix them the best we can. The only way we do that however in my opinion is through using a team approach. Am I frustrated in the problems that this virus is causing? Yes! At the same time I have to have patience and understand what the healthcare system facing. Often our emotions take over because it involves our loved ones and we only want what’s best for them.

Regardless of the reasons, at the end of the day it comes down to the fact that people are slipping through the cracks. So what do we do? I can’t help but feel compelled to be a voice for those who can’t. Sure with hospitals opening up little by little we are seeing the care get back to normal levels. Does that mean we just forget about these problems that people are experiencing. With COVID-19 some of these protocols are going to be the new norm in healthcare I’m sure. This means that some of the issues are going to continue as we move beyond the virus unless we do something to fix them. Again, another reason to open up a dialogue with those responsible for Canadian healthcare both at the Federal and Provincial levels!

All I’m trying to achieve through what I will call “a rant of frustration” is to bring some awareness to some pretty serious obstacles that people are facing at the moment. In a perfect world they get fixed overnight but we don’t live in a perfect world now do we. At the same time we can’t just sweep these problems under the carpet! Living with a chronic illness I have a pretty good understanding of the needs within the chronic illness community. Patient communities like mine can often have to rely on constant care from a hospital. So when a person living with a chronic illness has difficulty accessing that care it isn’t just a “little thing” but rather it can have a profound impact on their quality of life.

Nobody knows when this pandemic is going to be over. So I guess this is worrisome to me because if we don’t start doing something about these issues then even more lives will be affected. As a matter of fact as I started to write this piece, I had been scheduled for surgery to replace my stim battery that helps give me relief from my chronic pain my CRPS causes. Only to be called two days before, to tell me that the surgery had been cancelled. The date was booked for the end of July. Somehow I managed my pain through the last month and as we speak I’m recovering from surgery. These are the types of things I’m talking about! With a rare disease I don’t have the luxury of numerous options in how to manage my pain! So when the few I have don’t work or stop working I need care right away .

Like everything else this pandemic has changed about our world, so to has it changed the way our healthcare systems function. Let’s make the changes that we need to make so that fewer people fall through the cracks!