Table 2.
Reasons why people stop going to a SAC to receive care for their ataxia
| Reasons | UK N (%) | Germany | Italy |
|---|---|---|---|
| Problems with travelling / transport to SAC | 12 (25.5%) | 5 (16.7%) | 12 (26.6%) |
| Did not find it useful | 6 (12.8%) | 1 (3.3%) | 8 (17.8%) |
| Not referred again | 7 (14.9%) | 1 (3.3%) | - |
| Equal care locally | 2 (4.3%) | 4 (13.3%) | 8 (17.8%) |
| Unable to take the time off work to visit the centre | 0 (0%) | 0 (0%) | 0 (0%) |
| Other [please specify in the text box] | 5 (10.6%) | 10 (33.4%) | 9 (20%) |
| Unsure | 2 (4.3%) | 9 (30%) | 8 (17.8%) |
| Do not wish to answer | 1 (2.1%) | – | – |
| Closure of a centre | 12 (25.5%) | – | – |
| Total N respondents | 47 (100%) | 30 (100%) | 45 (100%) |
Below are the comments of participants for each country who answer ‘other’: Other reasons in the UK: ataxia is mild, waiting for referral, waiting for an appointment, feel others would benefit more than me i.e. younger people
Other reasons in Germany: cancellation due to Covid, diagnosis not verified so only taking part in research, only required to see them every two years, was asked to see a general neurologist, ongoing care, attended an appointment at SAC as part of a research study
Other reasons in Italy: I am disappointed with the answers from the specialists, Latina is far from Rome, C/O Besta Institute/Milan they told me that at Ferrara hospital they can take care of me, At Besta they couldn't do nothing more, far from the centre - transport problems, I attend a non-ataxia specialist daily association but I am well followed up and they well understand my condition, I am still occasionally followed up, During the first years they seem to help then nothing, I hope they could do more they simply gave me a diagnosis suggesting me to refer to a neurologist I trust, I lost my contacts and not yet found an ataxia specialist who can follow me up in Puglia or near, stopped due to Covid