FARA Ireland is delighted with the level of interest shown by parents in the recent survey on the needs of children.
Parents of 11 Friedreich’s Ataxia (FA) sufferers completed the survey, with the children ranging in age from 13-22 years, with a mean age of 15.5 years. Their conditions ranged from being well (minimal symptoms) to one participant who was wheel-chair bound.
• 1 / 11 received physiotherapy every 2 weeks.
• 1 /11 had a “batch” of six sessions.
• 4 /11 seldom had physiotherapy from the HSE
• 5 /11 never had any form of physiotherapy from the HSE
Of the 11 participants in the survey, 7 were paying for physiotherapy for their child.
Just 3 of the 11 participants had hydrotherapy. However even though other children live near a hydrotherapy pool which is funded by the government, they were not given access to it
Most of the patients had met with an Occupational therapist. Seven of the 11 had been assessed regarding Assistive technology.
Satisfaction rates varied among the 11 people with two of the 11 people were very satisfied with the services they have received from the HSE and other agencies while there was 4 people very dissatisfied with the services they had received.