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What happens when we go to the clinic?

Photo: Sometimes they might need to collect more information or run more tests

The COVID-19 pandemic means that the majority of genetic counselling appointments are taking place by video consultation or telephone consultation, rather than face to face. Genetic clinics often see several family members together, which can still be done over video. However, it’s worth asking about this in advance as family members may have different concerns and often a separate appointment can be easily made.

If you’re deaf yourself, please make sure you let the department know about communication preferences such as email, SMS or Next Generation Text (NGT) Relay. If you need an interpreter (for British Sign Language, another signed language or spoken language) or other communication support, please let the department know.

It’s sometimes necessary for the clinician to gather more information and/or arrange further tests before they can understand and discuss the full picture with you. If the clinician needs further information about a relative's medical history, for example, you may be asked to pass on a consent form for them to give permission to access their records. The clinician will not access any medical records without permission and they also won’t contact any relatives directly.

If a definite or likely genetic cause of deafness is identified, they will try to explain the details in a clear way. Genetic counselling appointments are usually longer than a standard doctor’s appointment. This means you will have plenty of time to discuss all the information and ask any questions you might have. After your appointment you will be sent a letter to summarise what was discussed. If you agree, the genetics clinician will send a copy of this letter to the other professionals who are looking after your child.

Genetic files are kept longer than for most medical records, so you can get in touch with the department in the future if your situation changes or if, for example, your children want to ask questions in their own right.

The British Society for Genetic Medicine website gives an overview of what happens in a genetic counselling appointment.