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Is the MS Society representative ?

Is it fighting the corner of pwms - is the Society pushing for better services for us, pushing for our employment rights, ensuring that any medical assessments are pertinent to pwms.
Or is the MSS a rather genteel, passive middle-class organisation giving the professionals/politicians the impression that we are happy with the status quo?
My own rather cynical view is that they represent the able bodied community primarily.

stenovski wrote:
Is it fighting the corner of pwms - is the Society pushing for better services for us, pushing for our employment rights, ensuring that any medical assessments are pertinent to pwms. Or is the MSS a rather genteel, passive middle-class organisation giving the professionals/politicians the impression that we are happy with the status quo? My own rather cynical view is that they represent the able bodied community primarily.

I don’t think your view is at all cynical, regrettably I think you a very close to the truth.

Take care

Chris R.
I. El. (Eng). (Rtd).

Well I dunno about where you live but in the Midlands the local MSS does what they can and is ‘user led’. As for nationally the society does seem to be out and about, e.g touting itself at party conferences. Of course it will often be ‘genteel, middle class’ people who are obviously in the fore as that is what ‘genteel middle class’ people are taught is what they do with their free time. I know - I come from those people as well as being a pwMS
If at any time we feel we are not being properly represented then it is our duty to become an activist, get involved, get elected and make the changes needed.
Clarexxx

Cbear wrote:
Well I dunno about where you live but in the Midlands the local MSS does what they can and is 'user led'. As for nationally the society does seem to be out and about, e.g touting itself at party conferences. Of course it will often be 'genteel, middle class' people who are obviously in the fore as that is what 'genteel middle class' people are taught is what they do with their free time. I know - I come from those people as well as being a pwMS If at any time we feel we are not being properly represented then it is our duty to become an activist, get involved, get elected and make the changes needed. Clarexxx

Well said, Clare.

Alison
x

northernlights wrote:
oh, and why do we have to pay for our prescriptions, when people with, for example, type 2 diabetes, don't?

Why isnt the MS society fighting these issues?

You don’t have to pay for prescriptions. Ask the receptionists for a medical exemption form and present it to your doctor to sign. He will probably say that ms is not one of the illness mentioned but tell him that you will be on medication for life…eventually he’ll sign it for you.

alison100 wrote:
Cbear wrote:
Well I dunno about where you live but in the Midlands the local MSS does what they can and is 'user led'. As for nationally the society does seem to be out and about, e.g touting itself at party conferences. Of course it will often be 'genteel, middle class' people who are obviously in the fore as that is what 'genteel middle class' people are taught is what they do with their free time. I know - I come from those people as well as being a pwMS If at any time we feel we are not being properly represented then it is our duty to become an activist, get involved, get elected and make the changes needed. Clarexxx

Well said, Clare.

Alison
x

How do you define the genteel middle class people.

My definition is glory hunting busybodies, who are conspicuous by their absence when there is real work to be done. Which I think about sums up the committee members in a lot of organisations. Residing in their own constructed ivory towers, of self importance.

Class only exists in the minds of those, that consider themselves better than others.

Be an activist, get involved, sorry but I don’t think so, you would not stand a snow flakes chance in h***, if you tried to rock that very cosy boat.

Rant over. :evil:

Take care.

Chris R.
I. El. (Eng). (Rtd).

I know its going to be a bad day when I get out of bed and miss the floor, today is such a day. :shock:

chris.r wrote:
[.

Be an activist, get involved, sorry but I don’t think so, you would not stand a snow flakes chance in h***, if you tried to rock that very cosy boat.

Rant over. :evil:

Take care.

Chris R.
I. El. (Eng). (Rtd).

What, not even if I was a genteel middle class activist - darn! :lol: :lol: :lol:
Pardon my ignorance but what does I. El stand for? :?
Clarexxx

stenovski wrote:
Is it fighting the corner of pwms - is the Society pushing for better services for us, pushing for our employment rights, ensuring that any medical assessments are pertinent to pwms. Or is the MSS a rather genteel, passive middle-class organisation giving the professionals/politicians the impression that we are happy with the status quo? My own rather cynical view is that they represent the able bodied community primarily.

The MS Society is heavily involved in political campaigning and provides millions of £s annually for research [see Get Involved and MS News & research].

I don’t DO passive organisations that work on a class system - and while you may meet a lot of people you THINK will fit into your niche you need to watch them fight our corner first.

Liz

Cbear wrote:
Well I dunno about where you live but in the Midlands the local MSS does what they can and is 'user led

Where are you in the Midlands?

Liz

I have been a trustee and can say for the vast majority of members thankfully the MSS are there.

On saying that I firmly agree with your statement ‘Or is the MSS a rather genteel, passive middle-class organisation giving the professionals/politicians the impression that we are happy with the status quo?’

Trying to get them activated over a simple; rational; logical way to get more funds is like Mohamed trying to move a mountain.

For example a Patron. Lady Alice passed away when she was 101; some ten years ago so for 20 years before that you could not expect her to be doing much. I don’t know if you’re aware but if you have Royalty as a Patron it’s for life; you cannot sack them or get rid of them.

Let’s get someone who meets the criteria laid down of being British and having experience of looking after someone with MS; I think its Marvin of JLS whose mum has MS. They seem like a nice crew; make the whole group Ambassadors for the next 5 years and see how we get on.

The MSRC have a brilliant Patron in Alastair Hignell so common the MSS get your finger out.

George

Cbear wrote:
What, not even if I was a genteel middle class activist - darn! Pardon my ignorance but what does I. El stand for? Clarexxx

Industrial Electrical.

Take care.

Chris R.
I. El. (Eng). (Rtd).

Maybe it's because I haven't had a whole lot of sleep in the past 48 hours, but this thread has made me quite angry. 

 

You don't have to pay £5 to access the MSS services. They are free. You can come on here. You can download loads of support material. You may one day benefit from leading edge research (who joint funded the recent breakthroughs in stem cell research and myelin repair?). You may benefit from an MSS-funded MS nurse. You can apply for grants. You can use the help line. All for the pricely sum of? NOTHING.
 

Of course, you can instead choose to pay £5 to support all of those services, and your fellow MSers who also use them. Or perhaps donate money in other ways. But you don't have to - it's a choice.

 

Are the MSS not doing what you want them to do, or not putting the priorities in the right places in your eyes? What have you done about it? (I'm excluding you here George!) 

 

And are you sure that they aren't campaigning for free prescriptions for MSers? or fighting for a change in the way that MSers are treated? or fighting for better access to meds? and a hundred other things? Have you signed up for the campaigns newsletter? Have you volunteered to get involved? I happen to know that they are working on precisely these issues! 

 

Someone says that the MSS should hire more MSers? So, what proportion of their staff has MS? What proportion of their staff has a loved one with MS? How many volunteers are actively involved in helping to run the MSS? What proportion of them have MS? Before people point fingers, they should know the answers to these questions.

 

The MSS should work closer with other MS charities? Has anyone asked those other charities what they are doing to work more closely with the MSS?

 

Sure, the MSS could do things better. What organisation couldn't?! Instead of whinging, perhaps you should try and help?!

And before I forget...

 

Awareness of MS is an absolutely critical campaign. No politician or health care manager (or any budget holder for that matter) is going to dedicate a decent amount of money to a condition that no one understands or cares about. The only motivation in politics is votes. People without a voice have no influence on votes. People without a voice get nothing. 

 

 

Phone the MSS and ask what you should do because you have -- been sacked from work because you have m.s.

-had a medical assessment that was totally unsuitable for someone with m.s.

-are living in accommodation that is unsuitable for someone with physical disabilities.

The Society will take your details and send some relevant? pamphlets within the week.

But you'll be left to fight your own battle.