New to the forum here (diagnosed in 2008 tho), the reason I created the account is to ask if MS Society is conducting any door-to-door campaigns nowadays?
Few minutes ago a young lady was at the door telling me she’s from MS Society and after I told her I have it, she wanted my details for some MS registry or something, asking if I have the proper care for this, if I’m registered with a hospital, etc.
Of course I told her I’m good, registered with hospital and so on and no other personal details given.
Was curious if this is for real or was just someone trying to scam me (although no money were asked or even mentioned at any point in the conversation, to be fair). This was in Warrington, Cheshire btw.
There is a MS register which one of the MS nurses told me about and filled out what I could for it. Have seen them being active at the infusion room asking people stuff for it but never heard of a door to door campaign at the moment. Hopefully someone from the charity can clear this up as would be a little suspicious myself if someone came randomly knocking at my door wanting info.
Does not sound like the MS Register as it is something you sign up for. They capture your path with the disease, mainly by asking you to fill in a set of questionnaires every 6 months. This is not too onerous and some of the information is stored so you can look back at it in graphs/reports.
Their strap line is “Let’s Make Sense of MS”
Look up “ukmsregister.org”
Their data is widely used by the research community and to add numbers to policy. It is supported by the MS Society.
The more people that contribute the better it will reflect people with MS in the U.K.
Cheers for the replies, first of all.
Yeah, found it a bit suspicious, that’s why opened this thread to make sure. I make a habit of not giving any personal info (or no info in general) to someone who just knocks at my door, is just that this time was a bit too personal, having MS myself for years.
I know about ukmsregister.org, registered there for quite a few years.