Getting a referral

If you have a diagnosis of an inherited retinal condition, or you are a close relative of somebody living with one of these conditions, you are entitled to access testing and genetic counselling.

If you are living with inherited sight loss, your ophthalmologist may be able to make arrangements for the genetic test themselves, or they can refer you to a specialist ophthalmic genetics centre. You should always be given the opportunity to access genetic counselling alongside or after the test; this can be provided by the ophthalmic genetics centre or via referral to your regional genetics service.

If you are not currently under the care of an ophthalmologist, ask your GP for a referral to your local ophthalmology department or directly to a specialist ophthalmic genetics centre.

You can find details of specialist clinics in Ophthalmic genetics clinics; it may be worth noting details of clinics in your region to pass on to your local ophthalmologist or GP.

If you are the family member of a person with inherited sight loss and would like to consider genetic testing, ask your GP for a referral to your regional clinical genetics service for genetic counselling.

We have produced some information for healthcare professionals to help you discuss testing with your GP or ophthalmologist. See For professionals.