If the M.S. Society wrote to the tabloids to explain how detrimental the WCA and Atos are to the health of people with M.S., do you think The Press would listen/react?

Or is that a stupid, futile idea?

The Web Team posts on behalf of the other MSS teams because the main purpose of the forums is for peer-to-peer support for everyone affected by MS - whether they’re a member or not . It’s definitely not meant to be used as a communications channel for our various departments.

Having said that - in parternship with your volunteer moderators - the web team looks out for threads that look like they might need input from the appropriate team and, as in this case, we ask them to comment if it seems appropriate.

In general, if you need input from a team about something - especially suggestions, ideas, complaints etc. - you’re encourgaged to do so directly through the numerous contacts, networks and blogs publicised on the main website.

The P&C team are preparing a reply to the further points raised and will include details of how you can get in touch with them with any further queries after that.

Greg [admin]

Do you know I thought Na; she must be having a hissingfit; the MSS must have already done that.

But NO; turns out they haven’t or I can’t find it; very bad if they have not.

Keep up the good work sparkledust


Not stupid, not futile, but not likely to work either.

The tabloids all need a headline - for the front page and for several pages in.
To get their attention, you need a headline that an editor can play around with so that he/she is doing their job.


would do nicely - then the editor could change “punish” for “penalise” (or vice versa).

Get that sent out by the Society - or a well organized pressure group - and it might just be published.


Sometimes the obvious isn’t that obvious at all…

Even if all the big charities that are against Atos, WCA etc., got together and decided to blitz the tabloids at the same time with protests/ member’s petitions/experiences, then, surely, even some of them might take notice?

If we don’t ask for publicity we might never get it.

If The Charities make enough noise, they would have to be heard?

Most likely they’d ignore it and carry on printing their attention-grabbing stories telling their ‘hard-working’ readership that anybody claiming benefits is a cheating scrounger enjoying a tax-free income of £1000’s along with a free luxury car every 3 years

We’ll never know for sure unless we try…

If we all ask the MS Society to act on our behalf to petition The Press, surely it can happen?

I think part of the problem is that everyone of us has to act. If enough people ask, they won’t be ignored.

We have to find our collective voice and start shouting to whover will listen, instead of accepting anything and everything.

If we don’t care enough to speak, why should anyone care enough to listen?

The impression I get is that the M S Society ‘toe the line’ and are very reluctant to do anything vaguely militant.

Isn’t the M.S. Society meant to represent us - isn’t that the whole point?

If enough of us asked they would listen.

Majority rule and all?

Paul Farmer, CEO of MIND left the Work Capability Assessment scrutiny group in April 2012, apparently following a visit to a MIND call centre where he came face to face with the impact Work Capability Assessment was having on individual disabled people.

Simon Gillespie, CEO of the MS Society replaced him.

Is the MS Society likely to speak out against this barbaric and heartless destruction of benefits and services to disabled people when ‘speaking out’ might threaten their funding from central government?

Maybe I’m just an old cynic…you might find the ATOS (sponsor of the Paralympics, slasher of benefits) games amusing though -

Forgot about all that!

That really sucks!

What’s the point in funding when there won’t be a society to fund, once we’re all “cured” of M.S. (courtesy of Atos) and found to be fit to work anyway?

If The Society refuses to help us, what’s the use of The Society - seriously?

Precisely, the problem is, the major charities are terrified of really speaking out because of potential funding cuts.

There is the campaigns department of the MSS (and most other major charities) but I think most charities are just watching and hoping someone else really speaks out rather than taking direct action.

You’ll find the following more helpful:


I think it’s about time they said something!!!

They surely know what we are all going through but we don’t hear a peep out of them!

Pat x

On the home page of the Society is a link to this page:
which states that the Society is “pushing” the DWP for details of the contract. It is dated 3/Aug/12 How hard are they pushing?

The CAB want ATOS fined (see a separate thread by sparkledust) for producing so many bad reports. They must be bad, or they would not be overturned on appeal.

rizzo and I have commented on the appallingly bad science behind the assessments (that was another thread). Now, I do not blame ATOS for the deplorable set of criteria used (the descriptors) but I would question whether they ever had someone with any statistical training look at the descriptor set - and, if not, why not? Actually, I can guess why not. You can say the same thing about Capita to a lesser degree. Of course, it is ATOS who have the predominantly French board of directors - take a look at their website , it really is interesting.

Remember that the descriptor set was produced under the Government of Gordon Brown, and picked up again under the umbrella of the 2 Cs, (oops, nearly slipped in a filtered word there) so I think that it is a fair bet that the same Civil Servant was responsible - and he, or she, should be named and shamed. Think of “Yes minister, I know how we can save £millions”.

Off hand, the only MP I would trust to do something about this is Frank Field. Get him on the case and the publicity will follow.


Morning all

I’ve been in touch with the Policy and Campaigns team about the points being raised here. They’ve asked me to post the following:

"The Policy and Campaigns Team regularly sends press releases on the issues raised in this thread. The MS Society is mentioned in this recent BBC article about the contract between Atos and the Government - However, we have no control over what get’s published by the press, despite trying to raise awareness as much as possible.

"On benefits we often work with other charities as part of the Disability Benefits Consortium (DBC) which is a group of 50 charities and other organisations committed to working towards a fair benefits system. You can find the DBC’s latest press statements on the DBC website -

"The Society is a leading partner within the Hardest Hit campaign, which is returning this October. You can read about this, how to get involved and more details of what we do in Policy & Campaigns on our campaigns blog -

"With regards to Simon’s involvement in the WCA scrutiny group we think his appointment puts us in a stronger position to positively influence the review and to make sure the WCA system is scrutinised properly, and that the voices of people affected by MS are heard at the highest levels.

"If you’re keen to take more action or get more involved you can join the Campaigns Network here - "

Greg [admin]

Your post above says it all, Greg.

The Policy and Campaigns team ask you to post something for them. Are they unable to do it themselves?

The link to the Campaigns Network reveals:

  • All the campaigns stuff seems to have stopped in the Spring (April/May, unless I have missed one).
  • There is a perfectly good template for writing to one’s MP.
    But, this only refers to someone not being able to get medication. The present thread that Sparledust started is nothing to do with drugs, but it is something that a lot of people feel strongly about.

Some of the comments that the Policy and Campaigns team ask you to post are - to say the least - a bit anodyne.

Part of the Society’s campaigning toolkit is an item on “Involving your Local MP”:
which does give another link, to a site where you can find out the phone number for your local MP’s constituency office. Valuable as this is, to offer a letter template, and a way of finding out a phone number (but not the correct mailing address) does seem to indicate a lack of - shall we say - “joined-up-thinking”.

I have said before that I am not (personally) affected by anything that ATOS do, or may not do. I do, however, think that the Assessment Descriptors represent such bad science (or, if you prefer, a total lack of statistical competence within the DWP) that the fact that so many ATOS Assessments were rejected on appeal, indicates a waste of public money. The NAO obviously feel the same way. The Society should have challenged the competence of ATOS in public (including all media), and made sure that every member knew that they were doing it. Then there would have been no need for Sparkledust to ask the question in the first place.


Given the number of u-turns this government does when it comes up against any kind of protest ( ie, pasty tax, ) I would have thought that if the Society actually did something about the WCA , caused enough noise and kicked up enough of a fuss, the government would change it’s policy as it has done on so many other issues, including the gift aid to charites.

It seems to me that if/when the Society’s income is threatend, they pull out all stops and campaign very hard to get the decision changed. And it worked. Which does make me wonder why they are not putting the same effort into saving us.

And please don’t tell me that the Society has no control over what is published in the papers. I am not stupid. I know that. If the ’ campaign and policy team ’ or whatever they are called have something to say to the people they represnt, I suggest they do the talking and not the web team and that they don’t patronise us by pointing out the bleeding obvious.

Fantastically said, Geoff!

And forgive me, Greg, but is there any evidence, at all, that Simon’s involvement in The WCA Security Group has helped any one of us at all?

We are still under threat of having our benefits unfairly stopped, so where’s the actual benefit?

I feel distinctly palmed off, and left with the impression that nobody from The MSS actually cares enough to find the necessary determination and outrage to really fight

(instead of empty posturing)

and HELP us.

Kick up a stink, contact The Press - no, you cannot influence what they publish, but you can inform them of our plight/experiences, terror, hopelessness, unsuitabililty for the WCA!

Set up petitions, get all the other charities to join together with us, and DO SOMETHING!!


We are DESPERATE and we need HELP - not links!!!

Good points Broushka! x

Well, that’s me told (or not)

It must be very annoying for the MSS when the irritating “natives” get in the way of their society by making unreasonable demands for help.

There’s obviously no need to argue about it though, as ignoring the pleas is obviously effective enough.

Maybe The Society could learn something from these quotes:

“It is not incumbent on you to finish the work, but neither are you entitled to refrain from it”

~ Pirkei Avot 2:16


Justice will not be served until those who are unaffected are as outraged as those who are.”
Benjamin Franklin

and finally:

First they came for the Communists but I was not a Communist so I did not speak out. Then they came for the Socialists and the Trade Unionists but I was not one of them, so I did not speak out. Then they came for the Jews but I was not Jewish so I did not speak out. And when they came for me, there was no one left to speak out for me.

Martin Niemoeller