Ataxia UK- Survey on Carers' Experiences

As part of our work to understand and respond to the needs of people with ataxia and their carers across the UK, and to guide the development of our next business plan, we are carrying out a piece of research looking across the range of their experiences, their engagement with Ataxia UK and with other services.

This survey is a key part of that research, which is being carried out by Nick Hopkins of Nick Hopkins Consulting. Nick recently carried out our research into the financial experiences of people with ataxia.  

We think that the survey will take around half an hour to complete. It is a mixture of tick box and open ended questions. 

You will also have an opportunity to volunteer to take part in the interviews and focus groups that are a key part of the research we are doing. 

You can complete the survey online, or you can complete the hard copy version which is being sent with the Ataxia UK magazine and return by freepost.

As a carer for someone with ataxia, you also have the option of completing the companion survey to this one, in which the questions are focused on the needs of the person with ataxia. 

For most of the questions looking at services, we are focused on the situation before the Covid-19 pandemic and lockdowns, though we do have some questions focused on those specific times.

In this survey, we are asking questions that are personal. Please be assured that your responses are completely confidential.

You are not required to give your name at any point on this survey, and there will be no way of identifying you from your response.

If you do give your contact details when volunteering to take part in the interviews, those details will be stored separately from your answers, and not linked to them in any way.

 Your data will be handled securely in accordance with GDPR legislation by the researcher. Beyond receiving paper responses and forwarding these to the researcher, Ataxia UK will not have access to any identifiable individual responses.

If you do not want to answer a question, or if it doesn’t apply to you, you can skip it.