In October 2019 Ataxia UK commissioned Nick Hopkins Consulting to carry out a research project exploring the financial inclusion related experiences of people with ataxia.
The aim of the research was to provide an evidence base to guide Ataxia UK’s future financial inclusion related information, support and advice provision and campaigning/ influencing activities.
The report is based on:
- A survey of people with ataxia / carers across the UK, produced in online and printed versions, responded to by 254 people.
- 26 interviews with people with ataxia, and 3 focus groups involving a further 22 people.
- Four interviews with staff/ board members from Ataxia UK.
This report sets out the key findings from that research, focused in turn on:
- The context for the financial issues covered in the rest of the report, focusing on experience and timing of diagnosis, the impact of ataxia on respondents’ daily lives, and on their employment and housing situations.
- The perspectives of people with ataxia on their financial situation and the extra costs they face associated with ataxia.
- Three sets of financial inclusion issues; engagement with the benefits system; debt and money management; and financial planning/ use of financial products.
- Experiences of engagement with other advice services, and with the information, advice and support provided by Ataxia UK.
- Views of potential future engagement in financial inclusion work by Ataxia UK.
It ends by drawing conclusions drawn from the report that can form the basis for future activity by Ataxia UK in this field, and makes a series of recommendations based on those conclusions.
The consultant would like to thank all those from Ataxia UK who gave their time to assist with this research, most of all those people with ataxia and carers who gave their time to respond to the survey, be interviewed or participate in the focus groups, and who spoke so honestly and openly about their experiences and perspectives, even when covering potentially difficult and private issues.
Read the full report here.