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Tell us your views on our language and information
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1.
What condition do you (or a family member/friend) have?
(Required.)
*
2.
How do you refer to your condition when talking to...
(Required.)
Referred to as ...
...a family member or friend?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
...an employer?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
...an acquaintance?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
...someone who doesn't know anything about your condition?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
Other (please specify)
*
3.
How do you refer to your condition when talking to...
(Required.)
Referred to as ...
...a family member or friend?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
...an employer?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
...an acquaintance?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
...someone who doesn't know anything about your condition?
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
Condition name (e.g. Becker muscular dystrophy, Charcot-Marie-Tooth disease etc.)
Condition name abbreviation (SMA, CMT, DMD)
Other (please specify)
*
4.
How would you feel if your condition were described by the umbrella term:
(Required.)
MD
Muscle-wasting condition
Muscle condition
Neuromuscular condition
5.
Which words come to mind when you think of Muscular Dystrophy UK? (pick three only)
Cutting-edge
Friendly
Informative
Community
Urgency
Research
Patient-focused
Family
Important
Trustworthy
Leading
6.
I feel like I am part of Muscular Dystrophy UK because:
they are the charity for my condition.
they put me in touch with other people with the same condition.
they communicate with me regularly.
their information is relevant to me.
they offer support in my area.
7.
Which information publications that Muscular Dystrophy UK produces do you refer to/make use of? (answer as many as applicable)
Condition factsheet
Information on financial support
Information on practical support
Information on psychological support
Medical and health information
Information for families
Information for professionals
Equipment and adaptations
Diagnosis and family planning
Other (please specify)
8.
Is the information easy to read and understand?
Yes
No
Please explain your answer ...
9.
What problems, if any, do you face accessing our information? (answer as many as applicable)
Text size
Complicated language
Not in first language
Cannot find information on website
Didn't know it was there
None
Other (please specify)
10.
How can we improve the information we provide?
11.
In your view what new information would be useful for Muscular Dystrophy UK to produce? (answer as many as applicable)
Information for children
Information for adults
Information for young adults
Information for families
Diagnosis information
Research
Welfare guides
Medical and health
Housing/adaptations
End of life care
Tell us more about your answer
12.
I know that Muscular Dystrophy UK understands the urgent need to fundraise for research because:
that's what they say/the language they use
I can feel it in the way they communicate
they fund so much research
the projects they get involved in really make a difference
13.
I have contacted Muscular Dystrophy UK ...
...to attend a muscle group meeting
...to campaign
...to fundraise
...for support
...for benefits advice
...for a grant (JPT)
...for information
14.
I wish Muscular Dystrophy UK would represent ______ more.
15.
I wish Muscular Dystrophy UK would focus more on talking about ______.
16.
How did you hear about Muscular Dystrophy UK?
Health professional
Social Services
Online
Family/friend
Event
Other (please specify)
17.
How do you keep up-to-date with our news and information? (answer as many as applicable)
Website
e-comms
Magazines
Muscle groups
Facebook
Twitter
Other social media
Other (please specify)
18.
Would you like to be kept up-to-date with our work? Please add your contact details.
Name
Age
Email address
