Young Persons Research Information Project
1. About You
Male / Female ________________________________________________
If you have a diagnosis what type of ataxia do you have?____________
2. Would the following information be useful (or would have been useful) to
you and other young people? (Please √ your choices)
How to recruit a personal assistant
How to access Personal budgets
The transition from child to adult services
Signposting information for being bullied or cyber bullying
Anything else you can think of?____________________
3. Information/Support from Ataxia UK
What was your greatest need at the time of diagnosis?
If young people approach Ataxia UK. at the time of their diagnosis, what
type of information or support do you think they would need?
4. What type of services would you like to see Ataxia UK provide for young
people? (Please √ your choices)
On line forum just for 18 – 25 year olds (should it be to 30 years of age?)
A link on the website directing you to specific information for young people
Young person’s activity days
A separate conference for young people
More activities at annual conferences for young people or even just a room to
A film by young people for young people – would you be interested in helping
A regular newsletter by young people for young people – would you be
interested in helping with this?
Anything else you can think of? ____________________________________
5. What type of information do you feel Ataxia UK should be supplying for
young people? (Please √ your choices)
Signposting info for welfare benefits,
help with living independently; careers, employment, education
info that is simple and clear
Targeted help for siblings.
Anything else you can think of? __________________________________
6. Supplementary questions
Do you have access to the internet? Yes/No
Which Ataxia UK servicers have you found most useful?
Did you easily find what you were looking for? What could be improved?
Would you like to suggest anything else that we should consider?
Thank you for helping us with this research and your feedback will be vitally
important to help us understand better the particular needs of your age group.
Whilst we can not guarantee that we will be able to implement all the
suggested changes and recommendations, we are committed to improving
our services to the young persons affected by ataxia and will prioritise our
time and resources as best we can.
Please return to Tina Thatcher either by post to the Ataxia UK head office or
by email to: firstname.lastname@example.org