Family Survey

Tell us about your experiences of the Huntington’s Disease Association.

We want to find out more about the people who use the services the Huntington’s Disease Association provides – especially through the COVID-19 lockdown.

We would be really grateful if you could complete the short survey below. It should take no longer than 15 minutes to complete.

Your input will be incredibly beneficial to us to help us plan and fund services for the future.

If there are any questions which don’t apply to you, please leave them blank.

We would be most grateful if you could complete this survey before Tuesday 12th May

Question Title

* 1. Please tick the option(s) that best describes your current situation

I have symptoms of Huntington’s disease

I have Juvenile Huntington’s disease

I have the gene but I am not symptomatic

I am at risk of Huntington’s

I have had a negative test for Huntington’s disease

I care for a family member with Huntington’s disease

I care for a family member with Juvenile Huntington’s disease

I have a child(ren) who are under 18

Other (please specify)

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* 2. Age

Under 18

18-24

25-64

65+

Prefer not to say

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* 3. Sex

Male

Female

Other

Prefer not to say

About you and Huntington's disease

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* 4. How does Huntington’s disease affect your day to day life?

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* 5. How would you describe the impact of Huntington’s disease in one sentence to someone who doesn’t know anything about it?

About you and the Huntington’s Disease Association

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* 6. Tell us how you heard about the Huntington’s Disease Association

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* 7. Which part of the Huntington’s Disease Association do you use? (please tick all that apply)

Specialist Huntington’s Disease Advisory Service

Huntington’s Disease Youth Engagement Service

Specialist Juvenile Huntington’s Disease Adviser

Publications

Events

Website

Message board

Welfare grants

Local branch / support group

Social media

On-line webinars or Q&A’s

I am a member of HD Voice

Question Title

* 8. In what ways has the Huntington's Disease Association helped you?

Helped you to feel less isolated

Helped you to feel more prepared for the future

Improved your emotional well being

Told you about another service that can help you

Improved your knowledge of Huntington's disease

Helped you in a crisis

Helped you to access financial support

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* 9. Why is the support from the Huntington’s Disease Association important to you?

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* 10. What would happen if the Huntington’s Disease Association didn’t exist?

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* 11. Would you recommend the Huntington’s Disease Association to other people affected by Huntington’s disease?

Yes

About your experiences of COVID-19

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* 12. How is the COVID-19 lockdown affecting you and your experience of Huntington’s disease?

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* 13. Are you getting the support you need from the Huntington’s Disease Association to help you during the COVID-19 lockdown?

Tell us more

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* 14. Use this space to tell us three things you would like the Huntington’s Disease Association to offer people affected by Huntington’s disease in the future?

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* 15. What area do you live in?

I agree by returning this survey, that the information I provide can be used anonymously in charity printed and online materials, and used for the ongoing monitoring of the charity services.