Advocacy, patient support groups...

After a disappointing and frustrating appointment with my NS on Tue I was wondering how many people here are happy with their medical treatment to date.
Are there Advocacy or drop in patient support groups in your area that you can turn to for one on one personal support/advice if you are unhappy with your treatment?


Ray

[mikeysmom1995]

Hi Ray,

I am sorry to hear that you had a bad appointment with your NS, it is always such a disappointment, and definately frustrating. I am constantly looking in our local paper, as well as a circular that we get from our local hospital for support groups dealing with  tethered cord for our older boy, and soon will be looking for Chiari for our younger boy, but I have been looking for years, with not much luck. Thank goodness for all of you as all of you are my support, as well as my source for advice. Good luck in your search.
Sometimes hospitals have advocates that you can contact if you are unhappy, here they call them ombudsmen. They help you to find a resolution to a problem you are having in dealing with a hospital situation.
Barb :)

[rod44]

Thanks Barb, we do have an ombudsmen and I have found an Advocacy group who are helping. My biggest problem at the moment is getting my medical records, I needed to apply in writing under the freedom of Information act. I have done this and hope to have them in a few weeks.

Ray

[selmaS]

Ray,

So glad there is a support system in place to help u....and the time frame shouldn't be too long...hang in there : )

[*Stormy*]

Rod- Other than my NS swooping in to save the day, I am extremely unhappy with my medical treatment to date. I was ignored and put off by my PCP for years, my NL did very basic tests then lost interest in me and I was sent to other specialists like an ophthalmologist who wrote me off as well. Like I said, I was lucky to find a good NS who discovered my Chiari but the only reason I even got to see him is because my husband knew him and asked him about me. Otherwise, I am almost positive that they were going to tell me that this was all in my head (my NL ignored the "incidental chiari" noted on my MRI). Now feeling stronger since the surgery I am gathering up my strenght to fight round two...I still have joint problems and other issues that still need to be addressed. I sat around yesterday upset and depressed thinking about how this is not over and that I am still going to have to fight to get the care I need (I have never been tested for EDS even though I have hypermobile joints, never had tests for autoimmune diseases even though many of my symptoms follow along under those lines too).

As for support groups, I have still not even found anyone in my area that has Chiari so they are pretty much non-existent here. Hardly anyone has even heard of it! I have tried to google for some where I live but the only thing I have come up with is other Chiarian blogs and most of them are filled with the unsatisfactory care they are getting in Canada.

All I can say, is thank goodness I found you guys!!

[rod44]

I agree cmoeller, unfortunately it is the same world wide. I found this group in my area made up of both Patients and health care professionals who are defecated to providing support and advice for people who have had a bad experience with our health service, there is also a Syringomyelia Support group here but their web site has not been updated for months and was offline for ages. Most websites I have visited are as you say full of peoples experiences, Doctors promoting their services or medical journals. This group is fantastic for support and advice from people at different stages in their conditions and treatment. We may be on opposite sides of the world but our experiences are very much the same, Chiari and it's related problems be they medical or emotional knows no geographic boundary's  

Ray

[Spaceystac]

http://www.chiaripeopleofpa.com/  
I found this site to be very informative  in the resource section the Patient Advocate Foundation. Their web site has hundreds of resources for people who need help, with anything from Meals on wheels contacts to local social and health services your area...

http://www.patientadvocate.org/index.php  
That is their direct web site. I spend hours yesterday writing down  contacts that not only benifit me, but my family and friends that need help in their own ways.

I hope others find this as helpful as I do!!!

[*Stormy*]

Spaceystac...thanks for posting those...I did take a look but I couldn't seem to find anything in Canada :(

Ray- you are right there are no geographical boundaries and the scary thing is all countries seem fairly even with their share of ignorant doctors!! The only advantage I see in the USA is that they have Chiari Institute which I would LOVE it if they had one here. Honestly, I never though of myself as a forum type person, never did chat rooms or anything but finding this has been a huge difference for me, it's really helped my confidence to go out there and fight for myself (which is always easier when you know you are not alone :)