We are creating new resources for people with MS, and we need your input. We would love to hear your thoughts on what's missing, what needs updating, and how we can better provide information for New Zealanders living with MS.

Please take some time to answer these questions providing as much detail as possible. Your comments will only be seen by MSNZ staff members. You can view our privacy policy here. Your answers can be provided anonymously. 

If you'd prefer to talk, please email: helen@msnz.org.nz with your contact details. 

These are the resources we are updating - you may want to refer back to this list as you answer the questions.

Information Series:
- Beginner’s Guide to Multiple Sclerosis
- MS and Fatigue
- MS and Your Emotions
- MS and Your Bladder and Bowel
- MS and Visual Problems
- MS and Spasticity
- MS and Sexuality and Intimacy
- MS and Speech and Swallowing
- MS and Pain
- MS and Changes to Thinking and Memory

You can view the Information Series booklets online here. 

Knowledge is Power series:
- Dealing with your diagnosis
- Disclosing your diagnosis
- Managing your MS
- Disease modifying drugs for MS
- Working with your doctor
- The impact of MS on your family
- Maximising your employment options
- Building and maintaining intimate relationships
- Parenting issues for people with MS

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* 1. When was the last time you read or referred to one of the MSNZ resources listed above?

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* 2. If you haven't used any MSNZ resources, why not?

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* 3. The topics currently offered by our information booklets are listed below. Please grade each on how relevant the subject is to you.

  Not relevant Somewhat relevant Quite relevant Very relevant
Beginner’s Guide to Multiple Sclerosis
MS and Fatigue
MS and Your Emotions
MS and Your Bladder and Bowel
MS and Visual Problems
MS and Spasticity
MS and Sexuality and Intimacy
MS and Speech and Swallowing
MS and Pain
MS and Changes to Thinking and Memory

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* 4. These topics covered by our 'Knowledge is Power' series are listed below. Please grade each on how relevant the subject is to you.

  Not relevant Somewhat relevant Quite Relevant Very relevant
Dealing with your diagnosis
Disclosing your diagnosis
Managing your MS
Disease modifying drugs for MS
Working with your doctor
The impact of MS on your family
Maximising your employment options
Building and maintaining intimate relationships
Parenting issues for people with MS

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* 5. Are there any topics you feel are not covered in the above, but would be useful to you?

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* 6. Thinking back to the symptoms you were experiencing prior to being diagnosed, what information would have been useful to you then?

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* 7. After diagnosis, what were the first questions you wanted answers to?

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* 8. Select the resources that would have been useful for you to receive in a 'Newly Diagnosed Pack', and please add any other things that would have been useful under 'other'.

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* 9. People differ in terms of how much information they would like to receive when they're first diagnosed with MS. From your perspective, would you prefer to receive all information relevant to you straight after diagnosis, or to start with the basics and request further information over time?

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* 10. If you have been diagnosed for some time, what information are you now looking for? You can select more than one answer.

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* 11. Would you find it more useful to read the information yourself, or to be guided through it by your Regional Community Support Worker (Field Worker)?

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* 12. In general, do you find the information provided by MSNZ provides:

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* 13. How often to you refer to the MSNZ website?

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* 14. What could we change about the MSNZ website to make it more useful for you?

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* 15. Aside from MSNZ or your Regional MS Society, where do you get information about MS from?

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* 16. Are there any questions about MS you've struggled to find reliable answers to?

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* 17. Some people record information to take to their doctor - like symptom diaries, or a list of questions to ask. Would it be helpful for MSNZ to provide a resource for this? If so, what might help you?

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* 18. Some topics can be hard to discuss, like sex and MS. Are there any questions about MS you'd like answers to, but find too embarrassing or personal to ask?

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* 19. If you needed information on a 'taboo topic', what would be your preferred way of receiving it?

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* 20. How would you prefer to receive MS information? You can pick multiple options.

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* 21. Would it be useful to watch videos and listen to audio as well as read information about MS?

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* 22. Would it be useful to have booklets created specifically for spouses, children of parents with MS, carers, or employers, etc?

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* 23. Can you think of anyone else you'd like to give information to? Think broadly - this could be anyone you interact with.

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* 24. There are benefits to hearing stories from others with MS. Are there any specific experiences you would like to read about?

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* 25. Would you be interested in sharing your experiences of life with MS in our new information booklets? If so, please provide your contact details below:

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* 26. Is there anything else you would like to share with us about your experience with the MSNZ resources?

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* 27. Do you have any comments that were not covered in the sections above?

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