Mary Mitchell O'Connor (Dún Laoghaire, Fine Gael) | Oireachtas source

Deputy Buttimer, the Chairman, and Deputy Conway were unable to attend today as they both have hospital appointments.

Representatives of Fighting Blindness are in attendance. A strategy has been adopted to try to pull together the various organisations involved in this area. Dr. Paul Kenna and Mr. David Keegan are involved.

I have a particular interest in this issue as I have a family member with Usher syndrome, a genetic condition that may affect more than one member of a family. I ask Dr. Kenna to provide a brief outline of the syndrome in terms of its genetic role and research being done in this area. I met Dr. Kenna 25 years ago and I am aware that research in this area has made significant progress. From my experience of having a family member with Usher syndrome, I can say it is hell on earth. Families do not know who to turn to for help when a family member loses his or her sight. They will call this, that or the other group because there is no co-ordinated service available.

The lack of regulation for the provision of hearing aids is a serious problem. People are paying sums of between €4,000 and €6,000 for hearing aids which are sometimes substandard and do not help the person with the hearing difficulty. This issue needs to be addressed because some people are spending all their money on these products. This industry must be regulated. I am not referring to audiologists but to companies which are setting up shop in various towns and cities and are not subject to regulation. These companies can put whatever price tag they wish on a hearing aid.

Isolation was alluded to but depression is a major problem among deaf-blind people. Perhaps Dr. Kenna will address the issue of suicide ideation because it needs to be discussed.

Ms Brill referred to public services, including the Luas transport mode. The colour of Luas trams the fact that they are extremely quiet mean it is difficult for deaf-blind people to see or hear them. Public bodies must address these types of issues.

The witnesses made the point that high technology hearing aids are not available through the HSE. We need to consider that issue seriously because it is a huge investment and I understand the hearing insert in the ear needs to be changed every six to 12 months, which also costs money. Support services are limited in this area. The Ann Sullivan Centre is doing its best but doctors should be trained in dual multiple sensory impairment. I have experience of accompanying a deaf-blind person on visits to doctors and consultants who ignored the patient and directed their questions at me. It is important that the dignity of the deaf-blind person is respected. I would like to see more audiologists and experts in Usher's syndrome being trained in how to deal with blindness, as well more ophthalmologists being trained to deal with hearing problems.