The MS Trust makes excellent information films. They've recently released one about the way enquiries for information are handled to ensure all contacts are shown the paths and choices before them.
See here:
Tip: subscribe to the MS Trust YouTube channel while watching this one!
I recently visited the MS Trust offices and met the people in this film. They could not be more approachable, caring, kind nor could they have their hands on more information. Phone them when you need to
MS Trust
Providing information you can trust, supporting the MS specialists you need
Talk to us about MS - 0800 032 38 39
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 mssociety@icmunlimited.com.
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: helpline@mssociety.org.uk.
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.
Nick
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?
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.
