Post by Lαrα on Jul 12, 2014 3:33:49 GMT -8
It has taken me some time to think about wether to actually post about this or not. To be honest, its taken me 4 months to decide to post it and i am doing because for one reason i feel you guys have a right to know and secondly..i just feel so strongly that this is wrong.
In march this year, i left a telephone message with an organisation member of a well known Cauda Equina Organisation here in the UK. Initially i contacted them to ask if they would be interested in 'networking' with us.
I explained that we are developing a very useful resource here on the forum and naturally we are happy to share. I asked if we could also use one their articles to add to our resources.
But wow..i was taken aback by her response when she called me back. I was on my way to the local hospital for a leg scan when she called...and after our initial greeting she told me who she was.
I recognised her name because we had messaged each other one time on a FB Cauda Equine Syndrome support group. At which time she seemed pleasant..or so i thought!
Anyways she made it very very clear that we are not to use anything at all from their internet site...and was rather blunt about it and incredibly defensive. I asked her if the organisation had actually put together the articles or were they sourced (i already knew they were sourced )
Not surprising she told me they were sourced and that they had permission to use them so i then said 'I too will do the same' Well she wasn't happy at all....she continued then to say that i would need to speak to the head person at their organisation for permission....and when i asked who is it i need to speak to.
She told me to look round the web..because she wasnt going to make it easy for me..
For anyone who knows me..if im told i cant do something or something isn't possible then..i will make it my mission to prove them wrong..determination is not lacking with me.
If the link wasn't so useful i wouldn't have pushed this...but it was and i wanted the info for our members and guests..(which we have now)
The CES section here, is public..anyone can access it and the information. I want as many people as possible to read what we and you, our members are building up to be a very informative resource.
We ourselves, know how much awareness desperately is needing to be developed with Cauda Equina Syndrome. Too many of us our living proof of the need for this.
As per the representative of the CES charity...she went on to send me a text to remind me that she does not give us permission to use anything from their site..especially as she has worked so hard on it..
Hmmmm is she missing the point here? (unhappy)...very worrying indeed.
I find it very sad that this person took the attitude she did...i was later surprised that she also blocked me personally off her CES support page on facebook and blocked our forum off there too.
I did tell her what i thought and i didn't hold back >:(....i made it very clear to her what i thought of her reluctance to be co operative and her being unreasonably 'protective' of the CES site resources...or should i say 'selfish'!
I told her that working together we had the potential to make an amazing difference in respect of Cauda Equina Syndrome in awareness and understanding and this reaching to a world wide audience.
You may be surprised to know that she too has CES....
“Those who cannot change their minds cannot change anything.”
― George Bernard Shaw
(good one CT! )
For reference...we are NOT talking about the official UK Cauda Equina Synrome Charity...!