Each year, the Childhood Eye Cancer Trust reports back on families’ experiences of being diagnosed with retinoblastoma (Rb) in the UK: the symptoms they noticed; the healthcare professionals they saw; and how long it took them to reach one of the specialist Rb centres (Birmingham Women’s & Children’s Hospital, BCH, or the Royal London Hospital. RLH).
By recording and reporting this information, we can identify where problems are occurring, and what CHECT may be able to do to help.
2025 round-up
Overall 49 children from the UK were diagnosed with retinoblastoma in 2025, and we have information from 39 of these families. Two children were diagnosed through screening, one of which was through the groundbreaking Generation Study. So what were families’ experiences in 2024, and also compared to the 10-year average from 2015-2024?
1.Symptoms:
A white glow in the eye remains the most common symptom overall. This year more than the 10-year average noticed a white glow in the child’s eye, and slightly fewer than average noticed it in a photograph. This is significant because the glow is likely to be noticeable earlier in a photo than with the naked eye. A new squint is still the second-most important symptom, but slightly less families than average reported this as a symptom in 2025.
2. Healthcare professionals – who did you see first?
As is usual, GPs were the first port of call for concerned families, followed by opticians and then health visitors and 111.
3. Healthcare professionals’ referrals
Overall fewer healthcare professionals made urgent referrals when seeing a child with retinoblastoma compared to the 10-year average. The only profession to perform better this year were opticians, with a significant improvement on the 10-year average for urgent referrals made.
4. Number of healthcare professionals seen before referral to Local Ophthalmology Department
The number of children we were correctly referred on after their first appointment with a healthcare professional was equal to the 10-year average. However, the number of families who had to see four HCPs before getting the appropriate referral was disappointingly more than double the 10-year average.
5. Time from visit to first health professional to Rb centre:
Less families were referred during the recommended two-week urgent referral period than was average over the past 10 years, and it is the worst year since 2020 when just 35% of children were referred within the urgent two-week period.
6. Previous awareness of retinoblastoma
Perhaps unsurprisingly given the stats in point five, existing awareness of retinoblastoma was the lowest it has been over the past ten years, down on the average of 20%. Among those with prior awareness, knowledge had come predominantly through media coverage and social media — highlighting the critical role that public story sharing plays in early detection.