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Open letter from COVID-isolated caregiver in Ottawa whose father is likely to die

Father a month away from organ transplant planned for three years

by Craig Conoley

Update from March 19 post on Facebook
Update from March 19 post on Facebook

 

Attention All Primary Caregivers in Ottawa and Across The Globe:

Here’s the open letter I’ve written to our Mayor and our MPs on behalf of all caregivers providing care to the already vulnerable and immunocompromised; either awaiting care, in need of care and or recovering from care in community.

Please share this letter with others and your MP's so we can start representing a unified voice for all CAREGIVERS, donors, transplant recipients, and anyone who is already immunosuppressed because of severe illness.

We MUST seek to strike a proper balance between flattening the curve for the general public while at the same time ensuring advance testing for those who will fall within the 1- 4% of those who die from the disease.

These people are those who are immunocompromised like my parents and who are in community getting long term care or no care at all. Many of these individuals are cancer patients along their journey of diagnosis, treatment and recovery.

We need to act faster because of the asymptomatic nature of the virus.

If we don’t, we will lose many who are on waiting lists and already recovering in community. Furthermore, all of the care the system has already invested in for these individuals will be lost.

I believe in supplying this subset of the community, who have already invested years of their lives into waiting and care, with advance testing, or at least an amendment of the criteria by which testing is allowed. As citizens, we have the right to know if the most vulnerable will be protected, or if they will be treated as collateral damage in the weeks and months to come.

The fact that I was turned away yesterday means logical considerations have not been made and Health Institutions are still scrambling to determine what they are going to do.

How do we prioritize this one particular issue amongst the many this virus is now posing?

Where will this issue land?

Who will represent these issues on behalf of all caregivers in community who care for the immunocompromised?

----
Hello Elected Official,

My name is Craig Conoley and I work and live in Ottawa. I’m the President of Dan Rascal Inc.; one of the cities leaders in video production and advertising. I myself come from a documentary background, having travelled the world and aired work on CBC and TVO many times.

I am also a Millennial Caregiver.

Currently our family, like many others, are in a catch 66. I’m one month away from transplant for my father. I am the 'Living Donor' and we have just found out we are anatomically a match. This is the hardest test to pass and we have been preparing for three years.

My mother is also currently battling Stage 4 Glioblastoma at St. Vincents.

I am 1 of 2 primary caregivers for both.

I am also now coming down with the initial symptoms of Covid -19 after The Brewer Assessment Site turned me away for testing because I did not meet the current criteria.

Here is my inquiry.

Can there be advance testing put in place for the most vulnerable i.e. Cancer patients, primary care providers for immunocompromised patients in community, as well as those ramping up for living donation and recovering from transplant?

Why were these individuals left out of initial planning and not included in the first wave of testing?

Were these individuals not the most vulnerable in our society before the virus struck?

Shouldn't considerations for these individuals and their primary caregivers be prioritized at the outset?

As primary caregivers, who I believe are just as important as doctors and nurses in community, we represent the needs of some of the most vulnerable.

The public knows what it needs to do!

ISOLATE

For those who have to continue to move amongst others in a care capacity, like Doctors and Nurses, and for those who are caring for the sick and dying in community, like mothers, fathers, sons, daughters, doulas, therapists ect. We need access to the testing yesterday.

We do need to slow down the curve, but we also need to protect those who have been engaged and waiting in care for years and months.

We cannot forget about these vulnerable individuals amidst our efforts to protect the currently healthy.

I do believe we will be measured by how we protected the most vulnerable in this moment.

To recap - I explained my situation to senior officials at Brewer Park's Covid-19 Assessment Centre yesterday.

I went to get tested because I’m exhibiting symptoms in line with THE WHO assessment of the virus and the virus can also be asymptomatic.

I went knowing I did not have advanced enough symptoms to meet their criteria.

I knowingly did this because I'm the primary caregiver for a declining father and mother who are in community on lockdown due to the pandemic and who depend on my care.

After I explained the situation to senior officials at the assessment centre, they still turned me away and expressed that many other transplant patients, in recovery and awaiting living donation, had already been turned away that day and would continue to be. I would imagine this is due to the lack of available tests to go around.

According to CTV, out of the 340 who registered to be tested at the site that day by 5:30pm, only 259 met the criteria to be tested. That means I was one of the 81 people turned away because we weren't sick enough. Out of those 81, how many were primary caregivers trying to ensure continued care for their loved one? How many were doners on the way to transplant or in recovery? How many were immunosuppressed and scared for their lives.

It's my fear that if we are turning away these people now...there is no way our government will be prepared for the true community transmission that's about to reveal itself.

This is why I strongly believe there needs to be a special site for advance testing for the immunocompromised, specifically for primary care provides, living in community, providing 'quality of death' to their loved ones and who may also be ramping up for donation or recovering from donation in community.

These tests need to be executed in tandem with the general public.

This needs to happen quickly because of the asymptomatic nature of the virus and the grander risk to the most vulnerable of society.

With this additional testing, primary caregivers can tag in new care or continue care without pause.

I know this takes time. I'm just making sure it's being thought of and that solutions are on the way because I am fighting for the life of my father and the remaining life of my mother.

For primary caregivers, like myself, who may already be on leave to care for their loved ones, we desperately need our leaders to recognize our exceptional needs in these exceptional circumstances.

We also have a responsibility to our future caregivers, Millennials like myself, to be transparent about the limits of care in the Nations Capital and our Country.

I commend you for your measure, your wisdom and your leadership which I’ve always admired.

With Hope and Love To You and Yours

Craig Conoley

Concerned Citizen, Millennial Caregiver, Documentary Filmmaker & President of Dan Rascal Inc.

#millennialcare #caregivers #covid19 #testing #vulnernable

March 15, 2020


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