Views of People with Ataxia in Scotland

Ataxia UK works to improve diagnosis and treatment of ataxia and to encourage research. At present, people with ataxia in Scotland have limited access to the few specialists in ataxia. Does Scotland need a centre of excellence? Would virtual services be a way forward?

The experience and views of people with ataxia in Scotland are needed to inform the case for further provision and to contribute to wider policy initiatives to improve the provision of care for people with rare conditions.

To help please fill in this questionnaire by the 27th June.

Getting a Diagnosis

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* 1. How long was it before you first saw a GP about your first symptoms concerned with ataxia?

Less than a month

Between 1 and 3 months

More than 3 months but less than a year

More than a year

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* 2. How long was it from your first GP appointment until you saw a neurologist?

Less than a month

Between 1 and 3 months

More than 3 months but less than a year

More than a year

Haven't seen one

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* 3. How long did it take for your neurologist to diagnosis or confirm that you had ataxia?

Less than a month

Between 1 and 3 months

More than 3 months but less than a year

One to two years

More than two years

N/A

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* 4. Do you have a precise diagnosis of the type of ataxia you have?

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* 5. Have you ever had a genetic test?

Yes

No

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* 6. How would you rate the performance of the health service with regards to your journey to diagnosis?

Inadequate

Requires improvement

Good

Excellent

Inadequate

Requires improvement

Good

Excellent