In World Retinoblastoma Awareness Week (#RbWeek), iHV supports the Childhood Eye Cancer Trust (CHECT) to raise awareness of retinoblastoma.

Retinoblastoma is a rare 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. 98% of children in the UK with retinoblastoma survive, but early diagnosis is crucial to save a child’s eyes, sight and life.

Photo credit: Childhood Eye Cancer Trust (CHECT)

Over one in ten (13%) parents of a child diagnosed with the rare eye cancer retinoblastoma (Rb) in 2022 consulted their health visitor in the first instance. Health visitors were the second most consulted professionals after GPs for parents with concerns about their baby’s eyes.

However, according to the annual survey from the Childhood Eye Cancer Trust (CHECT), less than 30% of these health visitors recognised that the child’s symptoms were a sign of this rare condition.

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

  • White glow seen in photos or in the eye itself – 77%
  • New squint – 33%
  • Change in colour of iris (coloured part of eye) – 9%
  • Loss of vision – 8%
  • Roaming eyes / child not focusing – 8%
  • Redness or swelling without infection – 7%
  • Absence of red eye in a photo – 1%

It’s important to note however that the symptoms are usually confined to the eye, and the child seems otherwise well in themselves, which can be misleading.

Richard Ashton, Chief Executive of the Childhood Eye Cancer Trust, said:

“Despite the extremely challenging environment many practitioners are working in currently, health visitors continue to play a hugely important role for parents of children this age. It’s important therefore that they are aware of the main signs of childhood eye cancer, and the appropriate action to take. This is why we have worked with the iHV to develop the Good Practice Points for retinoblastoma, and have a specific information on our website for health visitors at”

Alison Morton, CEO of the Institute of Health Visiting, said:

“We are delighted to be working with the Childhood Eye Cancer Trust to raise awareness of the signs of retinoblastoma amongst health visitors and practitioners working in health visiting teams. Spotting the signs of this rare condition and ensuring that these children access the right treatment as soon as possible makes a big difference to their outcomes. It is therefore vitally important that all practitioners are able to spot these early signs and can ensure that families are supported with accurate information and advice.

“I encourage all practitioners to read our Good Practice Points resource which was developed in partnership with the Childhood Eye Cancer Trust and contains a wealth of information in an easy to access and quick read format.”

World Retinoblastoma Awareness Week takes place from 14-20 May 2023. Help CHECT to raise awareness with their downloadable resources.

For more information for health visitors on retinoblastoma, go to

As part of World Retinoblastoma Awareness Week 2019 (12-18 May), the Childhood Eye Cancer Trust (CHECT) is asking health visitors to familiarise themselves with the main signs and symptoms of retinoblastoma (Rb), and the correct referral procedure, in order to aid quick diagnosis of the condition.

Retinoblastoma - image courtesy of CHECT

Retinoblastoma – image courtesy of CHECT

According to a survey carried out on behalf of CHECT, 35% of parents of children aged 0-6 have asked their health visitor to check their child’s eyes, compared to 29% in 2014 – over a quarter (26%) say their child’s eye health is one of their greatest concerns.

Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust, said:

“Retinoblastoma is a rare, aggressive eye cancer which affects babies and children under the age of six. We know health visitors are a key source of information and support for parents of this age group, so we are asking them to take five minutes this World Retinoblastoma Awareness Week to familiarise themselves with the most common signs and symptoms of Rb. Over 90% of children diagnosed with Rb will survive, but more than half will lose an eye in order to save their life, so urgent referral and early diagnosis is vital to save a child’s sight, eyes and life.”

The main signs of retinoblastoma are:

  • A white glow in the pupil or a white reflection in the pupil in flash photographs
  • A new squint
  • A change in the colour of the iris
  • A deterioration in vision

Rarely, retinoblastoma may present as a red, sore or swollen eye without other signs of infection such as discharge. Any of these signs in isolation can indicate retinoblastoma. Around one child a week in the UK is diagnosed with retinoblastoma.

For more information go to 

National Eye Health Week (24-30 September 2018) is a key point in the year for the Childhood Eye Cancer Trust (CHECT), a charity supporting the families of babies and children affected by a rare form of eye cancer called retinoblastoma, to raise awareness of their work with healthcare professionals, especially health visitors and GPs.

Retinoblastoma - image courtesy of CHECT

Retinoblastoma – image courtesy of CHECT

Over half of babies affected by retinoblastoma (childhood eye cancer) currently experience delays in their diagnosis – and CHECT wants to reduce this. Because retinoblastoma is a cancer which primarily affects babies and pre-school children, health visitors have a key role to play in identifying and referring potential concerns.

Further to our work last year with CHECT to develop a GPP on retinoblastoma, please take the the time to test your knowledge of retinoblastoma (childhood eye cancer) with a short questionnaire from CHECT: