Thanks everyone for replying, some very interesting views.
I like the idea of allowing home visits I wonder if branches who offer this service do a CRB check on the people doing the visiting.
As I said before my branch only does a wed once a month from 8pm to 10pm and at present they offer nothing for me, our local active MS gang (outside of the branch) and we fund our own things organize our own pub/coffee and gym sessions and one member organizes a trip to go to Kew gardens twice a year for everyone.
From my local branch I sought advice on two issues re. my my M.S. - how should I respond to an employer who was trying to force me out of my job becaueI had m.s. – and what should I do about telling my car insurance people.
They didn’t want to know - I think it’s the same today, when it comes to helping us fight our corner or giving moral support the MSS doesn’t want to know.
I visited my local ms therapy centre which is run seperately from the ms society branch, who just happen to hold their monthly meetings in the building. It was like an old people’s home, absolutely awful. Apparently the branch and the centre have very different ideas about what should be offered, but all that makes for is a disjointed watered down service to all. I am in my early thirties, and they were expecting me, and I had asked for someone to tell me a little bit more about what they do and what I could get involved in. My husband and I arrived, and were unceremoniously deposited to sit around a large table of people in wheelchairs who were having their lunch. “This is Sam, and she’s had ms for a year” no reference to my husband. I felt so self conscious, interrupting lunch, my husband went purple from embarrassment, however fortunately I recognised one of the attendees as a former work colleague, so we were able to chat to her and let the other carry on eating. The people were very nice, although I was a bit disturbed to be asked if I had my blue badge yet, as I was fully mobile at the time, and obviously so, especially when compared to some of the others in the room.
The lady I knew gave us the tour, and all I had running through the back of my mind was how awful and institutional it was, and as someone who has worked for nhs in the community, could immediately see what a waste of money the entire thing was. They said that they had around 100 people using the centre, which doesn’t open at weekends or evenings, the cafe is a small kitchen unit is the corner, charity shop was a cupboard, couldn’t see a gift aid sign anywhere! Considering that there are over 1000 people estimated to have ms in my area, not including further afield, I really felt that this was a group of self interested people who weren’t interested in the wider community. No-one ever spoke to my husband!
So, what would I want from my local branch, or similar group? For them to take over the centre I saw and turn it into something that supports a wider audience, doesn’t just cater to the select few who no longer work, where the social activities aren’t focused around the pub, that actually has a purpose other than being just an alternate to the front room. My ms nurses told that they aren’t made welcome, and have asked in the past if they could do some community services from there and just aren’t welcome.
The chairman at my local branch was handing out some really useful information packs about MS at one of our meetings sometime ago. When she got to me she said “Oh, you don’t have MS, do you?”. When I corrected her she then went on to say that I always look so well so she had assumed that I was a carer!
I expect that attitude from the general public who may be ignorant of MS but not from the chairman of the local MSS … Going anon on this one in case I am recognised and singled out at future meetings!
From my local branch I sought advice on two issues re. my my M.S. - how should I respond to an employer who was trying to force me out of my job becaueI had m.s. – and what should I do about telling my car insurance people.
They didn’t want to know - I think it’s the same today, when it comes to helping us fight our corner or giving moral support the MSS doesn’t want to know.
When I went to a local branch meeting none of the ‘officials’ had m.s. and they seemed most uncomfotable with me because I was working, driving etc. That is, I was doing what they did.
I didn’t want to meet up for ‘coffee and a natter,’ what I wanted was support - but it’s not available for many pwms.
Oh my, the active part of our group who go out etc didn’t like going ot branch meetings because of same theme each month and the hall has high ceiling and its very loud and echo’s. One of the helpers wanted to do a bbq and he rang us all to pls go so we did.
The chairman (female) then said ‘the only time we show up is when better food is on offer’ and repeated her statement for months.
My problem with all the committee is they are out of touch, refuse to embrace technology don’t keep up with new treatments and news, won’t encourage exercise and do any marketing of the branch.
We get called up by MS nurse and physio nurse to do talks at our local hospital which is outside of the branch.
Another charity was doing a joint fund raise quiz night and 1/2 would have gone to my branch, non of the committee members bothered to show up only the same active gang came along.
i have been to our wed lunch today. yes crb checks are done. which led to further discussions re are the mss pushing folk away who just want to be a friendly ear (no practica/nursing care involved i mean). i understand the need for checks-of course i do-i have been subjected to them. checks dont ‘catch’ everyone-some folk still get to kids for example when they shouldnt.
the world is becoming a very sad place led by paperwork/rules-one day eventually (i hope) common sense and human basics will return-until then we are led/guided by h/s and rules which make life even harder, not easier for those who are already struggling… *sigh
Yeah I hear you. Alot of the people with my branch would be doing the help also have MS.
I actually get involved with 2 MS branches and go Sailing with Sailability in Ashford.
Because I’m a MS punter I get to know people in the circle and been round a few peoples houses either for a social or fix their computer.
Everyone just asumes I’m normal minded despite liking heavy metal music
Anyway my point is at what point do you say CRB check needed, I brought CRB up as I thought I read it on national, running a branch guidelines.
I think keeping it low key lots of coffee/tea cake sessions to just allow people to talk ask any questions and get things off their chest, I don’t feel there is any need to pretend are providing a service by forcing people to do bingo once a month.
They did try Karoke but in a echo high ceiling hall and 90% of people above 70 it did not go down very well.
Our active group easily spends hours in the pub or costa etc and we never run out of things to talk about.
I think that is the problem with the monthly socials at my branch. There is always a guest speaker or an activity planned which means you can’t just chat to people. Then there is perhaps a half hour for a cuppa and then they start packing up. If you try to chat to people when you first arrive you are quickly shushed so the activity can commence. I wouldn’t mind if there was another informal evening every now and then where NO activity was organised so you could just mingle and get to know people properly. I feel as if I would be frowned on if I mentioned this but they are constantly complaining that the monthly meetings aren’t very well supported whereas the coffee mornings (when I am working) are very busy. I think that just proves that people want the informal approach. I wish I had the time and energy to organise something nearer me and in the evenings but by the time I hold down two jobs and have an afternoon nap each day, it’s not feasible. That’s why I rely on this forum so much and the few people I did connect with at the socials. I meet up with them privately.
I’ve emailed another branch today, that’s about a fourty minute drive away. Not sure if they will let me join though…they don’t offer much at mine. At this other one, they have a physio, ms nurse, bowel nurse who visits plus other group things for members. I’ve been discharged from my Neuro because I’m not on DMDS so this would be helpful for me
The big thing about branches (if you have one) is that you do not have to spend a lot of time explaining to other people what MS is all about. Everyone knows more or less what it is like, and that everyone is different. Result is that you can get on with a chat without having to start with a long explanation.
As I understand it, the original idea behind the branches was to make support more local, and not so dependent on London. Now, this is moving to Facebook and Twitter. Yes, I know that Stewart has said (in another thread) that the Branches are still important, but I know several people who do not see it that way.
BTW, Stewart, if you read this, it is no use saying that the Society has 20,000 “followers” on Twitter to justify using Twitter. The going rate for buying “followers” is just £45 ($72) for 10,000. Similar rates apply to Facebook.
Basically last branch newsletter had a section saying if the younger people don’t step up to the plate the branch will close.
So we debated at length what to do with a branch, what to offer and whats important to newly diagnosed. we all decided to show up at branch meeting only to be ripped apart by chairwoman. I challenged her to what she said about us, to which she denied she ever said!
So I said the reason why we showed up was because it was said in newsletter the older committee wanted to retire and hand over over to others if otheres was not found branch would close.
She then stated she is not going anywhere and branch is not closing.
I and we can’t play these games of power and ownership of a disfunctional branch. So I and trying to tell the others you can’t fix something that refuses to admit change is needed.
Also the amount of rules and red tape national impose on branches to function really is a joke and should be streamlined to basics and common sense.
Example we said branch enviromentals of large hall with echo and poor lighting not suitable for us, according to national we have to get 3 quotes of different places with a full disability audit. WHY 3??? if one is suitable with disabled toilets, ramp etc that should be enough.
So I have decided after 3 years of this fighting and debates with the group and trying to improve a broken branch to just do what works for me.
DMD, Gym, Music and being social with like minded individuals with MS in the area.
Doctor Geoff, mentioning the 20,000 followers was not to justify using Twitter. At all. And they certainly weren’t bought- our followers are very engaged, supportive, humourous and enthsusiastic- not something you get when you buy followers.
A few things that make Twitter (and Facebook/Instagram/Youtube) valuable…
being able to impart important news re: meds, or campaign messages, of fundraising asks, to thousands of people which are then instantly shared by our followers, then retweeted around the world.
being able to support & encourage our thousands of fundraisers- who don’t have MS, don’t go to branch meetings, have never been to this website but who bring in huge amounts of money. They are young, may have a relative with MS and because of that- follow us on Twitter. That’s their only connection- and sometimes, it’s the only way we can thank them.
reaching out to people who’re under 25, who have MS and can’t relate to our other channels.
some fundraising/awareness campaigns are fuelled almost entirely by social media eg. ‘Cards for a Cause’ which auctioned 30 cards designed by artists, musicians and stars. When a card by David Tenant (Dr. Who) is seen by thousands on Twitter- that creates discussion around the issues of MS- and helped raise loads of much needed cash for research.
sponsors, supporters, researchers, journalists etc WANT to work with us and enjoy working with us due to a large social media presence.
I could continue…
Re: branches: they are fuelled by volunteers who are what makes the MS Society thrive and survive- but the branches are quite independent (because that’s what they want and it’s what works)- and there’s only so much we can do when volunteers drop out and/or people don’t attend. It’s sad to hear that some people on this forum weren’t welcomed in a way that they should have been- we can only act when informed. We have to offer a broad palette of support, especially if people don’t enjoy or can’t get to a local branch. This discussion is hugely interesting, but ignoring social media and its benefits would be very foolish.
The charities with the most funding, biggest PR and most support happen to have a massive social media presence. That isn’t a coincidence, it’s a fact that we have to consider if we wish to continue growing, evolving and offering the support that’s needed.
It’s not a case of either/or- we need both branches AND social media.
I did not intend to suggest (nor do I) that the Sociey had bought it’s Twitter followers; all I did was to quote the going rate to buy them. I do know of places where Twitter is used very effectively as a communication medium with in a closed (but rather large) organisation.
You could look at it this way - rattling a collection tin outside Tesco for a day would buy quite a lot of followers if you wanted to.
