Hi everyone,
How many people use their local MS Branch and what do you do there?
I’m tyring to get some data on what different peoples needs and expectaions are, based on different
age groups and attitudes .
Social Aspects
Once your diagnosed and on a DMD is being social and interacting with similar MSers important
to you?
What would you like to see a branch provide and organize?
Do you prefer a monthly meeting or fortnightly etc?
Many thanks in advance.
(As you know!) my local branch sucks generally. I would much prefer meetings that didn’t resemble an old folk’s home’s lounge where all we seem to do is sit quietly, eat some pretty dreadful sandwiches and drink tea (and pay out loads of money for raffles with terrible prizes!). Having MS does not mean that we can’t have fun!
Ideally, I would like a drop-in centre. Somewhere that is ours, not hired for a couple of hours a month. Regular meetings, but also the ability to drop in for a coffee and a chat, play games (e.g. backgammon, cards, etc), a bar, free wi-fi & a couple of PCs, outings to the theatre and cinema as well as the standard places. Somewhere that actually spends some of the money they collect!
Not sure this answers your questions, but maybe others will do better…
Karen x
I dont go to a ms branch but a msd drop in centre,wheree there are nurses there ,to help u with any questions,also you get the chance of alterrnative treatments,from reflexology,indian head massasge,aroma therapy,and reki.and of course as much tea as u can drink
Wow thats cool wellman, mine does nothing like the above! All we get is Tea, sausage rolls, quiz or bingo once a month
and an evil eye
Hello Mont,
I have never been to our local branch, but I have been to the resource centre with its hyperbaric oxygen facility (though I haven’t used that yet). But mostly what is there are well thumbed books and occasional “guests” (mainly wives of the local council staff) who sit there eating fried bacon. I won’t bother making a return journey.
Moira
I’ve never been. To be honest, I’d feel a bit scared. I know it’s supposed to be for anyone/everyone with MS, but rightly or wrongly, I visualise it being mostly frequented by people at the more disabled end of the spectrum, and think I’d feel a bit of an impostor.
I might be completely wrong. I just imagine finding myself in a big room where nobody else can walk, and feeling like I shouldn’t be there.
I am very involved with my local branch, they have been a life line to me. I now help others if I can. We have 3 outings in the spring, summer and early autumn, sometimes I would not go out if it was not for these outings. I have made friends there. Sometimes find them a bit negative and annoyed that they didn’t come to our fitness classes and have now had to cancel. I suppose most of them are pensioners and are not that interested in exercises but saying that our oldest member has PPMS and still comes to classes.
We have a support meeting once a month which is in an old church hall, it would be better if it was nearer the town. Some groups have ‘drop in’ centres I understand. We do have a Christmas meal (in January) which we really enjoyed.
It is important to me that I am able to speak with people who understand how I feel. We are able to help one another with advice on pain and other MS symptoms.
I just wish there were a few more younger people attending our meetings.
Wendy
x
When I first joined mine it was bingo or quiz with some more bingo and quiz and to be honest I thought I walked into
Help the Age branch. No info on MS leaflets any information about MS at all.
For a 40 year old it really was not for me and was was about to go and not go back
Couple of guys (my age group) said we need younger people as you can see the problem and we want to go out to pubs, days out etc.
Well in sept about seven of us started doing the GYM and have kept that up since Sept 11, we as a group within a group also do coffee mornings, odd lunch and even network with another MS branch to see what they get upto.
My problem is 80% of people turning up at branch meetings have been claiming a pension for years and happy with Bingo or a Quiz or some old lady singing 1940’s period war songs and trust me it was not entertaining also, found out alot of them
don’t even have MS but come due to a lost love one or brother etc.
Its a real problem for the newly diagnosed which we want to help with emotional support and anwser any questions they may have and allow them to have a social life if they want it.
Our little 40’s group has been great, we feed off each others energy, support and push each other and a great friendship has grown with all of them.
The problem is we are to young and determined with dreams, ideas and refuse to give in to the MS which the branch is not geared upto the needs of people with MS who are under 50, so I’m trying to get ideas or say other branches do this why can’t we with the committee.
Our 40 group decided to have our own xmas meal and drink as the branch did not do anything, other branches gave out fruit hampers to its members.
Oh we got a Raffle which we paid a £1 a strip at Xmas with the possiblity to win some wine or coasters
So this my/our problem, what multiple things to do which will be suitable for all ages or have seperate group for the more active who want more.
Oh for reference we have a PPMS in our 40’s group it not just for the walking or hobbling.
Sorry for long post.
I immediately joined my local Branch when I was diagnosis with RRMS. That was about 2&1/2 years ago. I am fortunate to live very close to the regional MS Centre so I can drop in there when I want to. My local Branch has the use of the Centre for its monthly meetings. I guess that it took me a while to realise that not all Local branches have access to a facility like a Regional MS centre. I attend the regional centre during the day time for an art class, 1 hour a week, which is taken voluntarily by an artist for people who attend the centre in its capacity a ‘Day Centre’, some of whom are suffering the more disabling effects of MS. Attending regional fund raising/information events has made made me more aware of the existence of other Branches and an opportunity to meet others with MS whom I wouldn’t have the opportunity to meet. I must emphasise that I feel my local Branch provides help for me both in practical matters and socially!
Jonny
No, never been to my local branch meetings, I think they are only interested in getting further awards, for raising money to go into the society national fund. An ivory tower/clique culture.
My opinion.
Take care.
Chris R.
I. El. (Eng). (Rtd).
I have been to my local branch (3 times!) and that was to donate/give the money my boyfriend had raised BUT i won’t be going back because i’m much younger than everyone else there and i have a 3yr old daughter. They are nice friendly people but i find it quite depressing!
I never got involved with the Society for 10 years and then joined the MS Society and the local branch. Went to one of their dinners, but yeah people seemed older than me BUT they do a helluva good job.
If you want a grant from the MS Society, you have to apply to your local branch, did you know that Rizzo, Val et al??
Allright saying I’d like “a drop in centre, with bells whistles and we own the building”…FFS how do you imagine how do you imagine something like that is funded!! Local branches do a stirling job raising funds and awareness. Thats why I remain a member and not cuz of the wicked social scene.
Or you could be a real subversive, join and change from within. Try FB or Meet up for various social alternatives…
I feel a lot of the local area society’s don’t provide a strong enough base in general for that area, in regards to maybe places you’d be more likely to hold meets, or encouraging the social side of m.s. via its members. This is left to individuals themselves unfortunately. Reddivines right in saying you can’t expect every grace due to cost, as their biggest bulk of business is from fundraisers, donations, and i’m sure this is viewed very differently due to this reason, so have to accept how it is…
The Branch where I live puts on 4 exercises classes a week (2 chair based, yoga, Pilates), 2 monthly coffee mornings, quarterly lunches, twice a year “meet the health professionals” drop in, fundraising events such as Wheel & Walk and Zumba. All of these are reasonably well attended. Derek
I joined my local ms branch shortly after been diagnosed. The group I joined was the younger group. I was advised not to join the other group. In fact we met up last night and I had a bit of a laugh. We meet once a month in a pub in the city centre. As others have said it is great to be able to speak to people who actually understand what you are going through and can give the benefit of their experience . However, we chat generally not just about ms. It’s great to have that support.
No one needs to run a marathon for me.
Should the MS Society adopt a different model - one without the need for fundraising?
‘MS FREE’ would be a good name. So… NO buildings. No staff. No Expenses.
Just an online movement: for petitions - there to chat online as we are now - and do meet ups for socialising or local art groups or exercise clubs where you can use local gyms or village halls etc.,. As people do already.
You don’t need a London office or costly buildings to do this. Just a website like this one and few folk to up date it.
And you may argue, grants etc.,. well, all of my needs have been met either by the NHS Wheelchair Services or my local Adult Social Care or my PIP income.
So I have no need for grants.
My MS Nurse told me 2 weeks ago to join my local MS society, i said to him yeh i would put they are about 15 miles away, how do i get to them, and their meetings are in the evening.
There are two one is in the city and the other one a bit further out about 19miles.
I am recently widowed and i dont drive. I tried to get to the first one over a year ago as they do some good stuff there but I was told it would cost 40.00 as i needed to be able to take my wheelchair. I could go with my PA but she is only with me for a short time in the morning.
They meet up in the pub but again its evening.
OK i must be the old fogey bracket late diagnosis, 66 with PPMS but i dont want to play bingo thanks lol, just would like to catch up pub at lunch or coffee mornings etc.
There is a total missing niche where i live and i know a couple of people with MS who are sat at home all day and would benefit from a place to be supported.
I just wish the people who run them perhaps changed meetings to say Saturday lunch times not 7.30 in evening when i am already asleep.
I mean lots of people with MS from what i read, are so fatigued they cant go out that late.
Anyway if i could get there i would go to just to see and meet people. We did however always enter our classic car in the yearly car show etc they had my husband loved that.
Well some of us do.
Without the need for fundraising?? Please go back to the webpage and find where the funds raised are going. i have received 2 grants, once to attend my first MS Life and later to assist with buying a wheelchair. Grants are given for many reasons - respite care for one, to support carers not to mention funding for research.
The system and the NHS falls woefully short of providing for any disabled person and this is why funds are SO important. All i can say is you have been very very lucky if social care has met your needs entirely and if you will surely know many people are fighting for the right level of PIP.
I went once and survived half a day. It was a very expensive playschool.
Mark, my hubby drives the MS minibus one day a week and gets people to the club (branch activity day or whatever you call it).
The man in charge of the drivers and mini buses told me to go with Mark every week telling me “You’ll enjoy it” , “It’s great fun” , “you’ll love it, you will”,…
On the first day I arrived on the bus with the other captives and was pounced on by another lady who goes every week who decided to look after me on my first day. I sat next to her at a large table and the club organiser gave us all a sheet of paper telling us…“Today I thought we’d start with anagrams”, and we all had to work out a sheet full of anagrams.
We had already paid the daily fee (can’t recall how much). Then we paid a £1 for a raffle. Then £4 for wheelchair Zumba, then £2 a time for a go at PLAY YOUR CARD RIGHT. Oh I forgot the charge for the mini bus.
We were all asked for our choices for lunch because somebody went to Greggs to get the food. I asked for a chicken salad roll.
I paid for it…however much it was! When it arrived it was full of mayonnaise and I cant stand mayonnaise. I started to get very annoyed and asked snottily, DID I SAY MAYONAISE! I SAID CHICKEN SALAD! YOU DO NOT PUT MAYONAISE ON ROAST CHICKEN.
Mark was sitting over the other side of the hall, I threw the roll at him and demanded to be taken home.
So Mark took me home, about £25 lighter which would have been more if I had stayed for the day.
That is my experience. I hated it and I will never go back.
Flipping expensive rubbish!
I’ve never been interested in joining the MS Society’s “activities” either.
I like to do my own thing. And our local Adult Social Care team provide access to day care services.
And there are also many day time Uni classes and groups which I have joined - and been on day trips etc.,.
We always stopped for tea and a chat, none of my class mates had MS - other conditions - yes - does it matter?
So, the MS Society is attempting to duplicate existing services in many ways. Perhaps that’s the problem
here. The MS Society can’t compete with local services. Should it try to? I don’t think there is a need.
Because, there is the issues of choice and special interests - if I choose to go to an art class there might
not be enough MSers interested. So there is also the issue of numbers, economies of scale and logistics.
Travelling more than 5 miles to meet up is excessive - if you look there is bound to be something
closer to home or start your own local group around what interests you, but don’t expect a flood of MSers
because it is a relatively rare disease. For example, my GP’s surgery has 8,000 patients and I’m the only one
with MS in the catchment area. So I’ve always found ways of occupying my time by joined other local groups.
I’m happy.