If you’re worried that your child is showing a sign or symptom of retinoblastoma, get them checked out as soon as possible – take them to your GP, a local optician/optometrist or an ophthalmology department to have their eyes examined.

Although optometrists are trained to test children of all ages, some may choose not to test babies and younger children, so you may have to try a few before finding one happy to check your child’s eyes for you. Some ophthalmology departments have a walk-in or A&E clinic, but others will need a referral from your GP.

Retinoblastoma is a very rare condition, so you may need to explain to the medical professional you see that you are concerned you’ve seen a sign of retinoblastoma in your child’s eye(s) or in a photo, and that you would like them to be fully tested in order to rule this out.

What to take with you

If you have any unusual photos of your child’s eye/s, take these with you, along with a copy of our I Spy awareness leaflet. You can also download our See Red poster, which explains how a professional should check children’s eyes for retinoblastoma using a red reflex test.

The GP, ophthalmic optician/optometrist or a local ophthalmology department are all able to refer on for further tests if they are in any doubt about ruling out retinoblastoma. If you feel you are being delayed at any stage during the process, either in seeing someone initially or when waiting for a referral, or you don’t feel fully reassured that retinoblastoma has been ruled out, then ask for a second opinion until you are satisfied or have received an urgent referral.

What happens next?

At your appointment, your health professional should carry out the red reflex test in a darkened room using a medical torch (ophthalmoscope) to check the retina at the back of both eyes. If they have any concerns they should refer your child urgently (within two weeks) to the local ophthalmology (eye) department for further investigation.

If this happens, then you may find our information on what might happen next helpful. If you would like to talk to someone about the signs and symptoms of retinoblastoma, please call us on 020 7377 5578 or email support@chect.org.uk.

See also

Childhood Eye Cancer Trust - what might happen next 1


Childhood Eye Cancer Trust


Childhood Eye Cancer Trust - Signs and symptoms