Optometrists top urgent referrals for retinoblastoma, CHECT finds

The Childhood Eye Cancer Trust’s annual figures have highlighted the “crucial” role of optometrists in the early diagnosis of retinoblastoma

3 min read

An optometrist in dark blue scrubs peers through a viewfinder lens on an optical device. A child is sitting on his mother’s lap on the other side, with his chin on the rest and a light shining in his eye

Getty/Igor Suka

Kimberley Young

13 May 2026

The Childhood Eye Cancer Trust has highlighted the “crucial” role optometrists play in the early identification of retinoblastoma.

Marking World Retinoblastoma Awareness Week (10–16 May), the charity has released annual figures exploring the journeys families take to diagnosis, including the signs they noticed that prompted them to seek help.

The charity found that in 2025, 81% of optometrists who examined a child with retinoblastoma made the appropriate urgent referral.

This was more than any other healthcare profession and a “significant increase” on the 10-year average figure recorded by the charity for urgent referrals by optometrists, which was 67%.

CHECT's Pathway to Diagnosis data is recorded from the parents of children diagnosed with retinoblastoma each year. The 2025 figures were gathered from the parents of 39 children diagnosed with retinoblastoma.

Around one child a week in the UK is diagnosed with the condition.

An infant boy sits in a car seat and looks at the camera. In one eye a white glow obscures the view of his iris, while his other iris is large. He appears tired

CHECT

Signs of retinoblastoma

Richard Ashton, chief executive of CHECT, thanked “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.”

Ashton added that, with appropriate referrals, children affected by retinoblastoma can be quickly seen at one of the two specialist treatment centres in the country.

“This means treatment can start as soon as possible, giving the child the best prognosis possible,” he said.

The charity’s annual figures also highlighted the key signs and symptoms reported by parents of children diagnosed with retinoblastoma.

The most common signs identified was leukocoria seen in photos or the eye itself at 82%, followed by new onset strabismus at 32%.

CHECT’s Pathways to Diagnosis report for 2025 noted that the overall figures are “concerning” but emphasised the small sample group.

The report found that GPs remained the first port of call for concerned families, followed by optometrists, health visitors, and 111.

Overall, fewer healthcare professionals made urgent referrals when seeing a child with retinoblastoma compared to the 10-year average, the charity learned, with optometrists the only profession to perform better.

The number of children correctly referred after their first appointment with a healthcare professional was equal to the 10-year average, but CHECT found that the number of families who had to see four health care professionals before receiving the appropriate referral was “disappointingly more than double the 10-year average.”

The charity found that fewer families were referred during the recommended two-week urgent referral period than was average over the past 10 years, adding: “It is the worst year since 2020 when just 25% of children were referred within the urgent two-week period.”

Noting the impact that negative experiences can have in a small sample group, CHECT nevertheless confirmed it would look carefully at the 2026 results to identify “whether this is the start of a worrying decrease in rapid referrals for children with retinoblastoma from primary to secondary and tertiary healthcare.”