Sense had a positive response from families with Usher about the proposal to set up a special clinic dedicated to Usher syndrome. You can read the User Survey response report prepared by Penny Rudge in PDF format (117kb) or text only format (8kb).
The report's pages in PDF format need to be displayed horizontally. When you open the report, place your cursor on it and right-click on your mouse to select 'rotate clockwise'.
After discussion with the clinicians, it was agreed to open the clinic to patients with all forms of dual visual and hearing impairment as well as to those who have Usher syndrome.
The Dual Sensory Clinic, which brings together clinicians with expertise in eye disease, hearing loss and genetics is in the process of being set up at the National Hospital for Neurology and Neurosurgery in London under the supervision of Professor Linda Luxon, in conjunction with Dr Maria Bitner and Mr Andrew Webster. The clinic will run once a month and, as all NHS clinics at the present time, will require a referral letter from a General Practitioner or a Hospital Consultant.
