Afnoon admin sorry but tis a moan is there anyway you could perhaps in 2015-16 and beyond make a structure for Support Groupss to follow or something simuar that makes them good right across the board as the way i have been treated by the Cornwall 1 is poor and is poor enough for me to write this for you , im all for free speach and im also very charity minded but (Insert bleep here) i read everywhere how folks are getting support from their group and ive heard and read on here some excellent reveiws of their groups and in all honesty these groups should be rewarded in someway as they are superb and the folks running them giving their time and efforts to a great cause.
Perhaps its just Cornwall as it always seem to be down here thaats forgotten as per most things but what concerns me is ive never felt so alone and needed support and seeked support many times to be met with little to no result, now im not a me me kind of person im all for others but 5 -6 messages just trying to join the group or even just to get meeting dates so i too can seek others that know alot more than i with regards to the MS but also to give my wife someone to talk to and learn b ut also to have a laugh with other carers anyhows this is the final message i sent to the group please bear in mind 3 messages on Facebook fell on deaf ears but also 5 telephone calls all spread over the last 12-18 months.
Hi sorry this aint a positive message i have called and called even spoke to an older gent that said i should make a group for South West Cornwall id didnt want to make a group i wanted to join 1 he told me you have no meets my way , i got dx late last year after losing the sight of my left eye , i am 14yrs in but only found out it was MS late last year , i needed support and wanted to come to a meet , meet others and help out if i can in anyway as charity and support has been a big thing to my life being an ex-lifeboat crew/mechanic but even i felt alone as i dont know anyone with this desease , i have posted here on your wall asking when the and where the meets are again no reply nothing zilch from this group what if i was more disabled and no confidence or a voice you would just let them go quiet in the background with no support disgiusted you should be.
Now before anyone crashes and burns on me i have a real concern , what if i was suicidal because i felt so alone ? what if i didnt have a voice ? what if MS has beat the brown stuff out of me and i havent the energy to write a complaint ? what happens to the folks in those scenarios the thought is awful to thing that some out there are that bad and a little bit of support would and could make their family tree to continue to grow , anyhows im angry now and have never had top type an angry message without using a single bad word damn im getting good. I d also like to point out ive just found out meetings do take place in that group and only 30 miles away from me.