Dear Dr. Bhan,
I am writing to you for a few reasons today. First of all, last week was
my 4 month mark for venoplasty. I wanted to let you know that I am
still doing well and am thankful that I was able to not only afford this
procedure but was still able to travel in order to get it.
Which brings me to the second part of this letter.
In August I was in your office for my annual appointment and showed you a
list of your patients who gave me permission to let you see that they
are on a waiting list for this procedure. It’s been almost 3 months
since that appointment and those same people are now moving up the wait
list and will hear soon of an appointment for the procedure. If you
remember there were at least 25 on that list.
Those 25 people will be going out of Canada. At this point they will be having
the procedure with no pre-evaluation in Nova Scotia and no way to track
their progress upon returning.
Those people, most of them, are more than willing to have pre-angio evaluations. As you
probably already know, Dr. Gerald MacKean has at least one trained
technician who can do the dopplar ultra sound. My suggestion is that
you send a letter to your patients and let them know that your clinic
will do pre and follow up evaluations. This should include the
following: Dopplar Ultra Sound done by Dr. MacKean’s technician, MRI
to determine lesion load, Functional Assessment done by a Physio Therapy
Clinic and a cognitive assessment for those who have cognitive issues.
Three months after the procedure those same patients would have all of those
tests done again to determine changes. What better way to track
patients in Nova Scotia than this?
Although I still do not think its right for our government to force those wanting to have the
procedure to go out of country, I do believe that if this is the way
it’s going to be, for now, those patients are the perfect way to
evaluate.
For the third part of my letter:
And then there are those who are so far advanced with their MS that they
cannot travel. I know of at least 3 and have met all of them
personally and have spoken to them. Their stories are heartbreaking.
You know them. They are patients at your clinic. Whether they are your
patients specifically or not doesn’t matter. You know patients who are
going to die this year from complications associated with this
disease. You can make a difference with our Health
Minister on these patients having the procedure on a compassionate
basis. All three of these patients are determined, “come hell or high
water” that they are having this procedure and are on waiting lists.
The logistics of getting them on a plane and getting to the procedure
site is a nightmare, but they are doing it regardless. The stress alone
is going to weaken them, but they are still determined. I can’t
understand how anyone can deny a dying person this procedure and why it
cannot be done under the guidance of our doctors here in Nova Scotia.
These people have done everything that the MS Clinic has asked them to
do for treatment of their MS and are still going to die. Now, they are
asking for this final chance of hope and are being denied. It breaks my
heart and the hearts of so many others.
As for follow up care, I will only say that Maureen McDonald told a group of us in a
private meeting a few weeks ago that patients will not be denied follow
up care if needed as a result of complications with blood thinners or
stents. We both know, that if a patient has a problem with a stent
dislodging or clotting, there is no doctor in Canada who will remove it
or replace it, as this is considered an experimental procedure and is
not covered by Canadian medical. There have been people who have had
problems. This could clearly be resolved by not forcing patients to go
out of country and by offering the procedure here in Canada under the
guidelines of a trial. Another concern from one of your patients is
this; The patient has stents. Who will do the follow up care to
prescribe the blood thinners that she is required to take when her
prescription has run out?
I am asking for three things in this letter.
1. Please ask for a meeting with whoever the “powers that be” are and
suggest to them that the pre-evaluations and follow ups that I’ve
suggested be done.
2. Also at this meeting bring with you a list of patients who you know are no longer able to take any of the
disease modifying drugs and who are progressing in their disease and
please, please ask that this procedure be done on a compassionate basis
for them. This should prove that this procedure at the very least
improves Quality of Life.
3. I am asking that you please request that this procedure be permitted in Canada/Nova Scotia within
the next 6 months, after patients are given pre-evaluations and follow
ups and it is determined that Quality of Life has indeed been elevated
for the patients.
Dr. Bhan, YOU are the one in Nova Scotia who can make this happen.
Dr. Bhan, I know you have a heart of gold and that you truly care about
your patients, I have seen it as a patient and I have heard it from
others. And I will always be grateful for the compassion that you
expressed with me at a time when I needed it most, when my husband
died.
But, If you cannot find it in your heart to do this, I will do what I do best, and continue to help these people by
passing information to them to go out of country. I will continue, as
many of us are doing, to do presentations to groups of people with MS.
I am not swaying their decisions, they have already made up their minds
and know that the decision has to be theirs, but I, as well as others
will not stop them.
I believe in this procedure as I have met so many people personally who have had their lives changed by simply
opening some veins and having proper blood flow again. I realize there
is risk with anything such as this and so do the thousands of patients
who are having it done and the many more thousands who are considering
it. But, as a patient, when you consider the alternative of
deterioration it’s definitely a no-brainer to us. Active lives that we
once knew were only a dream after diagnosis, but with this procedure we
have hope again.
Sincerely,
Yvonne Andersen
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