Canadian inspired to try for local action.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Canadian inspired to try for local action.

Postby Brightspot » Mon Jan 18, 2010 5:57 pm

I have been delighted and amazed since finding this site, reading every post and taking vicarious pleasure in everyones progress. Thanks for posting!
Like many others have sent an email to Poland, and am trying to get into studies in Buffalo and Stanford. Also trying to get info regarding testing in Merida...anyone?
Meanwhile, today I sent email to my Member of Parliament (Libby Davies), my rep at the British Columbia legislature (Jenny Kwan) and the NDP Health Care critic (Adrian Dix). I sent the CCSVI summary from the American Association of MS, and the fear and loathing article by Embry, and requested to meet with each of them. I will gladly join with anyone else in Vancouver or surrounding area that would like someone to go with them and meet with their elected reps. I will post again when I get replies.
Have also emailed the president of the Canadian Interventional Radiology Association, Dr. Brian Hardy (he advises contacting the MS Society for information on upcoming studies), and the president of the British Columbia Radiological Society, Dr Terry Warner (no reply yet). I sent letters to 6 other intervetional radiologists whose names and contact info. I found on the association website. Agian will post if I get any positive news.
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Postby islander » Mon Jan 18, 2010 10:11 pm

I would be very interested to hear the results of your attempts! I live in Victoria and my mother in law with MS (who I am doing all this research for) lives in Nanaimo.

Let me know what you find out. I am also trying to find out about the UBC study that may potentially begin this year. They need to raise funds for a new imaging machine though, but that is something to bring up with the representatives you contacted!
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inspiration

Postby esta » Tue Jan 19, 2010 10:52 am

thank you brightspot, i couldnt even fathom doing all the work you just did.
If I can help as a support, I'd love to.
big job ahead, since our government just cancelled 8000 MRI's here in BC and it was after the CCSVI announcement...co-incidence????????????
esta
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Postby Brightspot » Tue Jan 19, 2010 11:15 am

Thanks Esta, any more detail on the cancelation of the MRIs? I would like to address it specifically with the MLA and health critic.
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Postby DizzyLiz » Tue Jan 19, 2010 2:22 pm

Keep going out west! - we at MSLiberatin are working hard back east!
Check out this site for suggestions to make more people aware, and posters to down load to put up, and info on finding your members of the Goverment, and etc.....
You can also support "kick-starting" testing in Canada.

http://www.msliberation.ca/MS_Liberatio ... lcome.html
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8000 MRI'S CANCELLED

Postby esta » Tue Jan 19, 2010 3:26 pm

hi brightspot
it was the BC health minister, and i will look for more info..
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bc cutbacks

Postby esta » Tue Jan 19, 2010 3:57 pm

hi brightspot, back again...

tthis site explains it all:

www.cbc.ca/.../british-columbia/.../bc- ... -cuts.html

December 08th, 2009

In British Columbia, it has just been announced that the B.C. Liberals have ordered Vancouver Coastal Health (VCH) to drastically reduce patient services and specifically, that VCH plans to perform only 18,000 MRIs in the coming year, down from 27,000 in 2008 and 20,500 in 2009. Similar cuts have been announced on Vancouver Island. These cuts are expected to increase wait-times in the public system by approximately 20%. Depending on your location within the province, this could mean wait times in excess of 18 months for a routine MRI.

...and why I chose Poland, June is my month and its coming soon!!!!!!!

esta
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Postby happy_canuck » Tue Jan 19, 2010 4:00 pm

Here's a link to a story about 10,000 MRIs cancelled in Vancouver. It's from Nov 23, 2009, though, so pre-the W5 story:

http://www.newswire.ca/en/releases/arch ... c3974.html

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Re: bc cutbacks

Postby jay123 » Tue Jan 19, 2010 4:54 pm

esta wrote:hi brightspot, back again...

tthis site explains it all:

www.cbc.ca/.../british-columbia/.../bc- ... -cuts.html

December 08th, 2009

In British Columbia, it has just been announced that the B.C. Liberals have ordered Vancouver Coastal Health (VCH) to drastically reduce patient services and specifically, that VCH plans to perform only 18,000 MRIs in the coming year, down from 27,000 in 2008 and 20,500 in 2009. Similar cuts have been announced on Vancouver Island. These cuts are expected to increase wait-times in the public system by approximately 20%. Depending on your location within the province, this could mean wait times in excess of 18 months for a routine MRI.

...and why I chose Poland, June is my month and its coming soon!!!!!!!

esta


And people want national health here in the US!!!
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Re: bc cutbacks

Postby happy_canuck » Tue Jan 19, 2010 5:14 pm

[quote="jay123
And people want national health here in the US!!![/quote]

jay123,

Note that was for "routine" MRIs. If you have an urgent reason, you get scanned immediately. Also, at UBC, my neuro said he could get an MRI for me that day, if needed.

If you want the truth about wait times in Canada (remember each province runs its own healthcare system), Google "wait times BC" or click here:

http://www.health.gov.bc.ca/waitlist/

The actual times have been shown to correlate closely with what those in the US experience.

I don't think the public nature of our system is a problem in this regard.

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Met with my MLA

Postby Brightspot » Fri Feb 12, 2010 11:37 pm

Met this week with my MLA Jenny Kwan.

She was very receptive, and had downloaded and printed articles from the Globe and Mail and the National Post.

She listened to my brief description of CCSVI, and my description of the attempts I have made thus far to be tested.

I also let her know that I went last week to Mexico to recieved an MRV, and that my next task was to go about finding someone to interpret it.

I told her that I am on the list for Poland for 2011.

I explained that I am a strong supporter of the Canadian health system and would happily pay more tax to maintain it....

So I am feeling seriously conflicted in knowing that people in Poland are having to wait for testing and treatment as a result of the influx of people from around the globe travelling there.
I do not believe I deserve testing and treatment more than others who do not have the means, but I am trying desperately to preserve the physical and cognitive ability that I have, so I am trying to seek testing and treatment where ever it might be available, and I want to make every effort to try to get testing and treatment for myself and every other Canadian with MS, here in our own country, within our own wonderful system of health care for those in need, not just those with means.. (yikes! bit of a rant, but there you go)

A few things we discussed:
-testing would not be available through a private clinic in Vancouver if it was risky or a sham.
-if there is evidence that testing is of some value, then it should be available to persons with M.S. through the public system
-the potential cost saving to the system if people are tested, treated, and have positive outcomes, so that they can remain productive and potentially avoid becoming dependent on very expensive drugs

Some suggestions Jenny Kwan made:
- send letters to the health minister and your own MLAs, requesting that testing and treatment be made available to you, (and get friends and family to do the same)
- the possibility of a press event to bring the issue forward
- the possibility of raising the issue at parliament

We agreed to meet again before parliament sits in March.

My next task is to circulate a little fact sheet to friends, family and other contacts to assist them in preparing brief letters to the health minister and thier MLAs.

I have had a reply from my Libby Davies office, saying that she is willing to meet with me also.

p.s. I have had no luck with my letters to intervenional radiologists or their organizations.
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Re: Met with my MLA

Postby happy_canuck » Fri Feb 12, 2010 11:53 pm

Brightspot wrote:My next task is to circulate a little fact sheet to friends, family and other contacts to assist them in preparing brief letters to the health minister and thier MLAs.


Brghtspot,

Thank you for the comprehensive update!

I would greatly appreciate it if you would forward to me the fact sheet you are preparing so I can distribute it through the Facebook group for BC MS clinics patiients and families (see link in my sig). We have close to 1000 members. Alternatively, if you aren't a member of the page, sign up and then you can post it yourself.

If we can get a significant number to write these letters, you just never know...

Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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