Trying to influence better stroke rehabilitation knowledge dissemination is extremely hard. I'm going to suggest we start at the top; The World Stroke Organization. If you look at their website there is nothing for survivors, we are just the fodder to present as pitiable objects that will lead to additional funding for them to use.
I asked them in an email once where were the rehab protocols and they just dismissively told me to contact the American Stroke Association or the National Stroke Association of the US. What a copout, they already knew that these two organizations don't have protocols and don't care about survivors. Their address and email are here:
WSO Administrative Office
c/o Kenes International
1-3, rue de Chantepoulet
P.O. Box 1726, CH-1211 Geneva 1
Switzerland
Tel: + 41 22 906 9166
Fax: +41 22 906 26 07
E-mail: admin@world-stroke.org
They also have a journal, this is where you go to get rules on how to submit an article to them. Please consider writing up your concerns and submitting them as an opinion article.
http://mc.manuscriptcentral.com/ijs
As you can see from the description they don't care about survivors;
The International Journal of Stroke is a clinically-oriented, truly global, stroke journal.
I wrote up one on the future of stroke rehab as seen by a survivor. It was rejected but at least the reviewers had to read and discuss the pathetic nature of stroke research.
Try asking for stroke protocols for dead brain function rehabilitation or what is happening with neurogenesis, neuroplasticity.
I know this is tilting at windmills but if we could get millions to deluge them, they might actually consider doing something for survivors. I did read once that there were 63 million survivors in the world. Pass this on, we have to start somewhere. Eventually we can work on our national stroke associations, maybe bottom up might work better but top-down dictators are usually faster. Democracy takes a long time to implement. This directly relates to my posting on stroke rehab vs. world domination.
http://oc1dean.blogspot.com/2010/11/world-domination-vs-stroke-rehab.html
When you do this do not mention anything specific about your condition/problems, that will be used to dismiss you because it will be seen as asking for medical advice. The National Stroke Association used this comment to me once when I was just trying to find out what therapies were used for spasticity;
'this question falls under our organizational guidelines as a medical inquiry and we defer to the medical community to respond.' The medical community has already responded; 'I know nothing'. You are on your own, good luck and good-bye.
If you don't want to start there, if you are in the US you can write to the president, I did.
http://oc1dean.blogspot.com/2010/09/letter-to-president.html
There sure is a strong line drawn between professional/ community education and with direct medical care and services.
ReplyDeleteOne of the pet peeves of some people at my little local Stroke Recovery Group is the confusion in our community between the Heart and Stroke Association and ours. Heart and Stroke does mainly research and public education, which I am all for, but nothing to support those who have already had a stroke or for their families.
People just can't find us and don't think of us during a crisis because of the overwhelming awareness of Heart and Stroke. They contact heart and stroke, get no information from them, and then assume there is no further direct help once you are out of hospital. The second stage longer rehab facilities do support us but many many people with strokes go from hospital directly back to the community.
We recently had one of our long time members pass away and the "give donations in memory" went to the Heart and Stroke association in error. NOT what she or the family had wanted, simply a lake of awareness by a family member who helped with arrangements.
A chink of light in this uphill challenge/battle - Am part of a "stroke forum" where professionals & stroke survivors meet & strategise,brainstorm etc about changing policy, care in & out of hospital,etc - we have been meeting quarterly for a year now - i think we're the only one in the country (UK) so far (I hope i'm wrong on this!). At the last meeting a student told us about a new web-based service featuring people's experiences with all kinds of diseases & conditions, & were encouraging ppl to contact them to add their own experiences to share. It's called "healthtalkonline.org". The page relevant to strokes is - http://www.healthtalkonline.org/Nerves_and_brain/Stroke
ReplyDeletehttp://www.healthtalkonline.org/Nerves_and_brain/Stroke
ReplyDelete- also has useful suggestons & contacts; as well as it's just so good to hear of other ppl's experiences. eg i have speach difficulties, aphasia ; some ppl have perceptual probs which dont necessarily get recognised or talked about much.