Thought people might be interested in this link, received by me from the MS Register.
Personal Independence Payment (PIP) is the new disability benefit that is replacing Disability Living Allowance (DLA) and they want to know more about how it’s affecting people with MS. They are particularly looking at the new 20 metre criteria for mobility support which means fewer people are receiving the highest rate.
Take the survey http://go.newvistalive.com/start/?jn=P18373&dS=1
They want to hear experiences from anyone currently navigating the PIP process or who is still on DLA, no matter what stage you are at. It should take around 20 minutes to complete and your responses will help the MS Society campaign for change across the whole of the UK.
The survey is being run by ICM Unlimited on behalf of the MS Society. So, if you have any questions about the survey please email the ICM Unlimited Research Team at firstname.lastname@example.org.
Your feedback will be completely confidential, and individual responses will not be attributable or made available to the MS Society, unless you give your specific consent.
You might receive an invite to this survey again, if you’re a member of the UK MS Society Campaigns Community or Shift MS but you only need to complete it once. Your views and experiences will help the MS Society call for a welfare system that makes sense for people with MS.
If you feel you need advice or support relating to issues raised in this survey you can contact the MS Society helpline on: 0808 800 8000 or via email: email@example.com.
Like a few other people here I have been signed up with the MS register for some time. They have just brought out a new survey which I have just completed this morning. A bit difficult to get through, that one, but I did my best to understand it!! For those that have perhaps not heard about the regular long term survey, it's well worth having a look and signing up, every little helps.
Nice and sunny for once here in Great Yarmouth, off to my seated exercises shortly, where I shall ware myself out and generally have a good chat to a few very different folk from all walks of life...........and ability.
I received the following e-mail from the MS Society :-
“Today we’re launching a brand new campaign, MS: Enough.
We’re calling on the UK Government to recognise the reality of living with MS and make welfare make sense – and we need your help.
Welfare support is vital for many people with MS, helping to manage the extra costs of the condition, stay in work for longer and participate fully in society. Yet the current system is not making sense, too often ignoring invisible symptoms like pain and fatigue and failing to recognise how MS can fluctuate.
Shockingly, over a third of people with MS said face to face assessments had caused their MS to relapse or deteriorate. Having MS is enough; it should not be made harder by a welfare system that doesn’t make sense. Please sign our petition to the Minister for Disabled People today.
Together, we can persuade the Government to recognise the reality of living with MS and make welfare make sense. Please click here to make your voice heard.
Thank you for your support.”
The Petition is here:- http://mssociety.cmail20.com/t/r-l-fhdgtd-djtumitdk-o/
MARINA ASKED (via the mailing list):
What difference would having a definite dx make to those of you (like me) who are still without a definite dx (as tests etc are still inconclusive etc)?
Or, what difference did it make to those of you who have had a definite dx?
How does having a dx help (given that there is no cure) and what does it change?
To what extent does it matter if one knows for sure or not? If it does matter, what makes it matter?
Hi, my name is Tom Jackson, I'm 20 years old, and my girlfriend was diagnosed last year, been a bit of a roller coaster since then, but i think she's doing pretty well now, and wants to give something back to the people that helped her most. With that in mind, the both of us are planning on running the BUPA 10,000, with the aim of raising money for the MS society, a brilliant charity that helped her alot, and I'm sure has helped some of you guys too.
I'm really writing here to ask you guys if you could donate. I know MS is something that will have affected many if not all the people on this site, and I was hoping to appeal to you here to generate some real community spirit that we can use to drive funds straight where it is needed.
Please donate online at http://www.justgiving.com/tomjackson00
or text TOMJ £5 to 70070 to donate £5, or replace that amount with any whole number.
It really would be appreciated, and the money really would help lots of people, many not so unlike yourselves.
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.