Pathways to Diagnosis 2022

Each year, the Childhood Eye Cancer Trust reports back on families’ experiences of being diagnosed with retinoblastoma in the UK: the symptoms they noticed; the healthcare professionals they saw; and how long it took them to reach one of the specialist retinoblastoma centres (Birmingham Children’s Hospital or the Royal London Hospital).  

By recording and reporting this information, we can identify where problems are occurring, and what CHECT can do to help. 

Last year we were able to report back on ten years of figures.

2022 round-up 

Overall 46 children were diagnosed with retinoblastoma in the UK in 2022, and we have information from 38 of these families (some children have a family history of retinoblastoma and so were diagnosed through screening). So what were families’ experiences in 2022?  


The graph shows the most common symptom to be a white glow

Although a white glow seen in the eye is still the most commonly-reported symptom, as with last year, many more families are reporting spotting a white glow in photos than has previously been the case (37% against the ten-year average of 18%). This is significant because in some cases the white glow can be seen in photos earlier than it can be observed with the naked eye, so potentially can result in earlier diagnoses. Also, it suggests that our awareness work is really having an impact: so a huge thank you to all those families who have either shared their stories in the media, shared our social media posts, or distributed our leaflets and posters in your local communities. You have all helped to make more parents aware that a white glow in the eye is something that needs to be checked out asap. 

After a white glow (seen either in directly the child’s eye or in a photo), squint was the next most-common symptom, noticed in just over a quarter (26%) of children later diagnosed with retinoblastoma. 

Healthcare professionals 

The graph shows that opticians have the highest rate of urgent referrals

As in previous years, most families saw their GP first when they had concerns over their child’s eyes, but opticians and health visitors also played an important role. 

And encouragingly, more GPs than ever in 2022 (two thirds) made an urgent onwards referral when they saw a child with retinoblastoma. This is such an improvement on the early years of the survey, when the figure was regularly around one third. Obviously there is still work to be done, but it is positive to see this upward trend, and especially after the pandemic year of 2020 when only 37% of GPs made the appropriate urgent referrals. 

Opticians were (perhaps understandably) the best route to diagnosis, with 83% making urgent referrals. However, issues still remain here around some practices being unwilling to examine very young children, and we are working on this. 

The trend is reflected in the number of medical appointments families had on average before being referred to a specialist retinoblastoma centre: over half were referred after just two appointments. 

Overall, more children in 2022 were diagnosed within the recommended two-week period than since CHECT started recording these figures: 73%. 

This means more children getting into treatment quicker than ever before, which is just fantastic to see.  

However, these figures don’t alter the fact that some families this year also had very difficult journeys to diagnosis, which means there is still a lot of work to do in reaching our goal of eliminating all avoidable delays in the diagnosis of retinoblastoma in the UK.