The severity of hearing loss and vision loss for people with Usher syndrome can vary from person to person, and in some cases the symptoms, especially vision loss, can be milder in younger patients. Also, some people with Usher syndrome may seem to have no obvious issues but they may instead transpire later. This can make it seem challenging for healthcare professionals (HCPs) how to ensure, when engaging with a patient with Usher syndrome, that their accessibility needs are being met.
Our simple advice is to always ask the patient themselves what they require or suits them since the requirements can vary.
The following provides some communication and guiding tips that may help HCPs to learn more on how to provide a more accommodating environment thus creating a more positive experience for patients with Usher syndrome.
Hearing loss can vary, and most people with Usher syndrome wear hearing aids/cochlear implants. However, these are aids and the success of these varies from person to person, and it can also vary in different settings (e.g. a quiet room compared to noisy corridor). In clinical settings, vital information is often being communicated, therefore it is important to ensure all patients have equal access to all the information that is being relayed to them at their appointments.
The following are some tips that may help to make it more accessible, but again, we say it is always best to ask the person what their preferred communication method is:
1. Where a person wishes to be guided, here are some tips on guiding:
2. Some people may not wish to be guided as they may feel comfortable walking behind you, e.g. if they are following you to a room. Therefore, please bear in mind these tips: