What are the benefits of membership of the MS Society when you have MS?
I’ve been a member since I was diagnosed just over eight years ago, so I get MS Matters and mail shots and requests for money from time to time, but does it do anything else for us?
I used to be a long term member but gave it up for the reasons you mention above.
Now I donate a muliple of the membership fee to the society which is a win win all round!
I don’t get all the stuff thtough the letter box and MS Soc. get all the money and save on the postage!
Take care all!
Steve.
I doubt a fiver even covers the cost of MS Matters, so not sure what you are expecting.
Legally the MS society is a charity so must provide any services they offer to anyone who has MS and not discriminate on the basis of membership. Membership does give you a right to attend and vote at Annual General Meetings both nationally and at a local branch you are a member of – that is actually the only benefit to you of membership. However it is more a question of showing your support or lack of for the societies work and that must be a personal decision
I joined the Society about three months ago shortly after I joined this site. Among other things the letter they sent me on joining said I would hear from my local branch within six weeks…I’m still waiting…
Ok, Ok, I know I should contact them.
Jan x
I contribute rather more to the society than the fiver it charges for membership, and frankly I expect the same from the MS Society as I get from the NHS for my MS which is precisely NOTHING. I’m not looking for a return on that donation. Perhaps I phrased the question badly.
However, I did wonder if it provides or subsidises anything to help sufferers and/or their families or to support young carers, say physio, counselling, alternative therapies, perhaps where as well as coping with MS they are dealing with financial hardship.
I never heard anything from my local branch following my membership. Yes, I could contact them but I think it falls to them to contact me first…makes all the difference I think
I know! human error and things get missed but when one is feeling vulnerable, that initial hello from your local branch just may mean a lot to some people
Ps; The reason I didn’t contact mine is because they don’t offer what I’m interested in.
Noreen x
Just to add to what’s been said about the right to attend and vote at the AGM and Branch Meetings…
I can’t paste the blurb from the relevant page of the website due to the current ongoing forum issues, nor the link to the relevant page itself (sooooo frustrating btw) so will try to type from memory…
We also get a chance to vote for our National Council Members (Wales, England, Scotland, N.Ireland - depending on where you live).
These are a body of dedicated volunteers who are accountable to the board of trustees, but for us as members they make sure that the MS Society provides the services it should, locally they make sure that our voices are heard - and they act on them.
Again can’t paste the link but if you click on the Menu ‘About Us’ top right, you can navigate from there.
Eiona
I get MS Matters and I get newsletters from my local branch - they were pretty quick to contact me when I joined but unfortunately I haven’t been able to go to anything as the events tend to be mid-week daytime, while I’m at work, or on the one evening a week I have a long-standing commitment.
I think the membership fee is a bargain.
Having plenty of members gives a charity like the MSS clout and status as a voice for people with MS in public discourse. The fiver membership fee doesn’t go very far in itself, but that’s not really the point here - I expect that most members give extra when they can, whether through charitable donations or by volunteering locally or (come to think of it) by giving their time to serve as volunteer Mods on this excellent Forum!
I think that, as a campaigning charity, you need a strong membership base to have any hope of raising funds to support all the excellent things that the MSS does, from raising the public profile of MS and MSers, to lobbying and campaigning, to shaping thinking on and providing support for research, to providing a framework for the local volunteer support network, to providing the excellent source of reliable information available on the main part of this site, to providing this Forum for us all to use.
To do all that, they need our time and/or money when we can offer it, but they also need the special sort of support that only being a fully paid-up member gives. The more of us there are on their membership list, the stronger the MSS will be, and the stronger it is, the more it can do.
Alison
It provides this website we are using for a start…
I agree with a previous posts that the membership fee is a bargain. I understand the benefits of membership goes in various parts to funding research into MS, how to improve the lives of people with MS, and awareness-raising.
Since MS was first mentioned to me as a possible diagnosis 5 weeks ago, through the MS society I have had access to a range of excellent and relevant literature, including a guide for my employers regarding employing an MS sufferer and their responsibly. I have gained insight as to what I am entitled to as an employee, and should I lose my job I have access to information regarding potential benefits and legal position. It has also suggested some practical solutions for living with this condition. The website provides an opportunity to meet similar people online and in person at events, who are going through similar experiences.
My wife and best friend have each visited the MS society site since my diagnosis, which I am delighted about for two reasons- firstly they wanted to know more about MS, and secondly had somewhere to go for reliable information.
Perhaps as an idea, they could publish/post by request, and/or have an online version to everyone? That would presumably make the £5 go further? Just a thought- I will get off the soap-box now…
Hugs/ best wishes as appropriate, Fluffyollie xxx
I’m Chairman of the local branch where I live. To those who are waiting for a call from your local branch, having been advised this by the MS Society Head Office, please, please call the local office. Communication from Head Office to the branches could sometimes be better and the local offices don’t always get a notification of a new member in their area.
For me as above but in all honesty i think they should have the magazine as an email format or pdf as id rather my fiver went to better use than a magazine & letters throughout the year , in the age of electronic perhaps a move to these and as per others suggestions should be made to cut cost thus keeping more funds for the soceity, as for local support groups i contacted mine in June 2013 taking the 1st step before finding the forum and was told and i quote “If you can find anywhere to have a meeting let us know and i will support it” then to find out that infact the group is quite active and something id of liked to get involved in but seems anywhere West of Truro and they dont wanna know , i took steps and emailed the soceity stating what support would there be for me if i started a group for West Cornwall and i was told you will receive and email shortly that was approx 1 month ago so support groups and support from the soceity wise im still waitng hmmmmm time for a coffee and sorry for the rant but tis true
respect sheep
ps you still get my fiver next year MSS
Sheep,
Sorry to hear that. I guess what gets done locally varies significantly from location to location. In the Isle of Man where I am, we’re very well catered for. We have monthly coffee mornings at two different locations, quarterly lunches, four different weekly exercise classes. All of these are great from a social standpoint with MS members, carers and family members all benefitting from the social interaction and the exercise classes are tailored to recognise our varied limitations.
Derek
Hi Derek yep its a shame they dont run at an equal level right accross the board as there are plenty frightened and new folks with MS that need support and help but some just dont seem to get it they seem to get overlooked for whatever reason , me personally im okay with it ive had so many different names and dx’s over the years that my angry and why me stage was years ago and in all honesty if the group contacted me now id tell them where to go as ive received all my support from this forum and the folks on it are awesome and eventually myself and others are going to meet up just as soon as i can ride there lol its the folks on here that make it easier to live with and understand as the groups are a postcode lottery and it shouldnt be like that but thank the wossits for the people on here
respect sean
There are so many ways to look at this, and as in life we all have differing opinion’s we all seem to enjoy this forum, but with no mss, this would not exist? Just having a phone number with a person that understands what your talking about if you have a question? That’s got to be good, since my DX. So many people from our dance clubs have organised things raising money for the mss, I keep saying hey you can just give it to Me, lol. (They think I’m joking) keep up the good work. MSS.
hiya
i have been a member for 9 yrs. i joined when i was still able to work and drive. i used to organise local lunches and get to gethers. now i have carers in, cant drive etc etc but i am so glad i joined in the early days and travelled all over scotland and england (and belgium/holland) to meet with folk i met thru this very site! regulars know i have been hammered (not in an alcohol way!) during past 2 yrs and i am so grateful for those friendships i made and still have. ok its via phone and text/email now but there are still there. i have read of some of you being wary of joining local mss (which i understand cos it shows u how cruel this ms malarkey can be) but at end of day we are all struggling to cope with/understand this. yes some are struck harder than others but of the very disabled folk i know not one thinks ‘poor me’. i think thats because they dont fight against ms but accept and deal with as best they can. for those recently diagnosed i also recall the confusion and wanting answers. i understand that too. but because of how i find myself now thats why my answers on here often talk about keeping your mind strong when body is falling apart.
i have gone off at a tangent! sorry! but join for support if nothing else. that depends on ur local branch but also on you!
ellie
Sheep,
please bear in mind that local branches are run by volunteers whitch partly explains the variation in what’s provided locally as you move from region to region. For quite a while after diagnosis, I wanted nothing to do with anything related to MS. I’d been approached by the local branch but wasn’t interested. Slowly I realised that the MS wasn’t going to go away and I made contact with the local branch and I’m very glad that I did. I’ve made from great friendships and it’s good to talk to people who fully get what you’re saying and completely understand when you’re explaining symptoms or a particular problem.
Derek