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.
2024 round-up
Overall 44 children from the UK were diagnosed with retinoblastoma in 2024, and we have information from 38 of these families (screening families are not included in this survey). So what were families’ experiences in 2024, and also compared to the 10-year average from 2015-2024?
As usual, a white glow spotted in the eye was the most common symptom overall. In 2024 two thirds of parents (more than the 10-year average) noticed a white glow in their child’s eye, 26% noticed it in a photograph, and 26% reported their child had developed a new squint (parents may report more than one symptom).
As is usual, GPs were the first port of call for most concerned families, followed by opticians and then health visitors.
Compared with the ten-year average figures, more GPs and opticians made appropriate referrals when they saw children with retinoblastoma in 2024.
As a result, 61% of children were diagnosed at one of the specialist retinoblastoma centres within two weeks of first reporting symptoms to a healthcare professional, which is a significant improvement on the 10-year average of 53%. However, 8% waited more than six months, which is clearly unacceptable.
Thank you so much to everyone who took part in the 2024 Pathways to Diagnosis survey – it really is so important for us to keep monitoring this information.