Optometrists top urgent referrals of retinoblastoma

Annual figures released by the Childhood Eye Cancer Trust (CHECT) for World Retinoblastoma Awareness Week 2026 reveal the key role optometrists can play in the early diagnosis of the rare eye cancer retinoblastoma (Rb).

Around one child a week in the UK is diagnosed with the condition, which mainly occurs in babies and young children up to the age in six.

In 2025, 81% of optometrists who examined a child with retinoblastoma made the appropriate urgent referral*: more than any other healthcare profession and a significant increase on the 10-year average figure for urgent referrals by optometrists, which was 67%**. This makes them a vital source of help for parents concerned about their child’s eyes.

The main symptoms reported by parents of children diagnosed with retinoblastoma are**:

Leukocoria seen in photos or in the eye itself – 82%
New onset strabismus – 32%
Change in colour of iris (coloured part of eye) – 7%
Loss of vision – 7%
Roaming eyes / child not focusing – 8%
Redness or swelling without infection – 6%
Absence of red eye in a photo – 1%

Richard Ashton, Chief Executive of CHECT said: “Firstly, I want to thank all those optometrists who made urgent referrals for children with signs of retinoblastoma last year. This year’s figures highlight the crucial role played by high street optometrists in the early diagnosis of retinoblastoma. With appropriate referrals affected children can be seen quickly at one of the two specialist retinoblastoma centres in the UK. This means treatment can start as soon as possible, giving the child the best prognosis possible.”

World Retinoblastoma Awareness Week: What can optometrists do?

Run through the Referral Protocol for Suspected Retinoblastoma at your next team meeting to ensure that everyone in store knows what to do if a parent contacts the practice mentioning any of the signs of Rb https://chect.org.uk/wp-content/uploads/2026/04/Optician-leaflet.pdf
Contact us on info@chect.org.uk for Rb signs and symptoms leaflets for your reception area.
Get involved in raising awareness by utilising our social media awareness assets or like and share our posts, photos and videos during World Retinoblastoma Awareness Week.

More Background

*CHECT’s Pathway to Diagnosis figures were gathered from the parents of 39 children diagnosed with retinoblastoma (Rb) in 2025. This information was recorded by support workers during the course of their conversations with families, and focussed on whether the families had any prior awareness of retinoblastoma; the signs they noticed in their child’s eyes that prompted them to seek help; and the actions taken by the healthcare professionals they consulted.

** The ten-year figures refer to CHECT’s Pathway to Diagnosis figures gathered from the parents of 456 children diagnosed with Rb from 2016-2025.

10^th – 16^th May is World Retinoblastoma Awareness Week. Information on how to help raise awareness or how to fundraise can be found on CHECT’s website https://chect.org.uk/retinoblastoma-week/

The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma. It:

Provides ongoing support and information to families and individuals.
Funds research into the prevention and treatment of retinoblastoma.
Raises awareness among health professionals and the public.
Influences policy to improve services for patients.

Retinoblastoma is a rare form of eye cancer that affects babies and young children, mainly under the age of six. Around 40-50 cases are diagnosed a year in the UK – or one child a week. It represents 3% of all childhood cancers and 10% of cancers in babies under the age of one in the UK.

Around 98% of children survive retinoblastoma in the UK but early diagnosis is crucial in order to save a child’s eyes, sight and life. The most common symptoms are a white glow in a child’s eye or pupil in dim lighting or when a photo is taken using a flash, and a squint.

For more information on CHECT or retinoblastoma (also known as Rb), including signs and symptoms, diagnosis and treatment options, visit https://chect.org.uk/info-for-professionals/