Create Accessibility for patients with Usher Syndrome

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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.   

Communication tips:

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:  

•  Ensure you are in a well lit area for the person to be able see you talking, It is also important to stand in front of the person, but never too close either. If the person is an ISL user and has a interpreter with them, always face the patient and never the interpreter.   

• Move away from any windows that may be behind you. People with Usher syndrome suffer from extreme glare, and may not be able to see your face to lip-read. 

• Do not shout or speak very slowly. Speak clearly. Sometimes rephrasing a word/sentence can help.   

• If you are in a busy/noisy area, move to an area that is quiet and well-lit, so the person is better able to understand you.  

• Ask the patient if they would like notes to be provided detailing what information was provided during an appointment.    

Guiding tips:

1. Where a person wishes to be guided, here are some tips on guiding:   

• Introduce yourself and ask the person if they require assistance. Do not be afraid to ask what the person can or cannot see, as this will help you to know how much information you need to communicate to the patient. 

• If the person would like your assistance, ask them how they would like to be guided, and if they prefer to be assisted from their left or right hand side.   

• Allow the person to take your arm.  

• Walk at the person’s pace, staying slightly in front of them e.g. one step ahead.  

• If the person uses a cane or has a guide dog, guide the person on the opposite side.  

• When entering a room, ensure the lights are on. People with Usher syndrome see more in brighter settings compared to very little in dull/dark settings due to night-blindness.    

• Always advise the person if you are leaving their side for a few minutes or saying goodbye. Ensure the person is aware of their surroundings before you leave.   

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:  

• If a person is following you to a room without assistance, ensure you stay in their line of sight.   

• Before entering a room, or going in a different direction, ensure you have the person’s attention that you are now entering a room/going in a different direction, otherwise you will disappear out of their line of sight and they will be unsure of where you are.  

• When entering a room, ensure the lights are on. People with Usher syndrome may be able to see more clearly in brighter settings as most see very little in dull/dark settings due to night-blindness.    

• Don’t point to things and say over there, such as “take that seat over there”, but instead describe location, such as “take the first seat by the wall to your right.”