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For eye care professionals

Here’s what you can do to help fight childhood eye cancer

19 September 2017

In conjunction with National Eye Health Week, we’re working with the Childhood Eye Cancer Trust (CHECT)  to raise awareness about retinoblastoma.

In conjunction with National Eye Health Week, we’re working with the Childhood Eye Cancer Trust (CHECT)  to raise awareness about retinoblastoma amongst the optical community. Babies and young children will not be able to tell you if they are having problems with their vision, so as a practitioner knowing the signs is crucial for saving sight, eyes and ultimately, lives. 


As part of Essilor’s mission to  'improve lives by improving sight’, Petra from CHECT has kindly written a blog for us this week to explain how early detection and knowing the signs is important for getting the best outcomes.

Retinoblastoma is a rare form of childhood eye cancer which robs babies and young children of their sight and their eyes. Would everyone in your practice know what to do if a child presented with a symptom of retinoblastoma? Make sure you are playing your part in helping the Childhood Eye Cancer Trust to reduce current delays in diagnosis so that affected children have the best outcomes possible.

The Childhood Eye Cancer Trust (CHECT) is a national charity supporting anyone affected by retinoblastoma (Rb), a rare and fast growing eye cancer that affects babies and children under the age of six. Around one child a week is diagnosed in the UK. Although 98% survive, early diagnosis is key in saving eyes and sight. Currently 70% of babies and children diagnosed with retinoblastoma will losing at least one of their eyes to save their life.

Retinoblastoma (Rb) is the most common malignant tumour of the eye in children. It can occur either unilaterally or bilaterally and generally develops before the first five years of life. Tumours develop in the retinal cells which are developing rapidly in early life. It is a life-threatening disease but 98% of children survive retinoblastoma in the UK. Over the past four decades, the management of this disease has evolved tremendously, changing from a deadly childhood cancer to a largely survivable disease. A swift referral pathway for a suspected case is vital to reduce loss of vision and the risk of mortality.
Current figures* show  babies and young children in the UK are waiting more than three times the recommended guidelines** to be diagnosed with retinoblastoma. These are statistics we would love to reduce, and you can help us.

Between 2012 and 2016, 85% of optometrists who examined children with retinoblastoma made an urgent referral, but this doesn’t tell the whole story, because some stores are turning these children away.
We still have parents telling us that staff at those stores that choose not to examine babies and young children, have sent parents away with misleading or no information at all about where to seek help and the need for an urgent examination, even though the child’s life could be at risk.

In response to this, CHECT has developed an Opticians’ Protocol on Retinoblastoma. It offers clear information, aimed at all store staff (including receptionists and dispensing opticians), on what action to take if a parent is concerned by any of the main symptoms of Rb. We want every optical practice in the UK to join Vision Express, Boots Opticians and numerous independents who have already adopted the protocol, to sign up to our Opticians Protocol today and to help prevent children with eye cancer having their diagnosis delayed. 

The main presenting symptoms of children diagnosed with Rb in the UK between 2012 and 2016*, were: 

  • Leukocoria – 66% 
  • Strabismus – 32% 
  • Change in colour of iris – 13% 
  • Redness or swelling without infection – 8%
  • Roaming eyes / child not focusing – 7% 
  • Loss of vision – 7% 
  • Absence of red eye – 2% 

The Opticians’ Referral Protocol for Suspected Retinoblastoma is supported by the College of Optometrists and the Royal College of Ophthalmologists.  For more information contact petra.maxwell@chect.org.uk

* CHECT’s figures were gathered from the parents of 178 children diagnosed with Rb in the UK between 2012 and 2016. 

In 2016 the average time from a child’s first visit to a healthcare professional to being seen at a specialist centre for retinoblastoma was seven weeks. 

** Consider urgent referral (for an appointment within 2 weeks) for ophthalmological assessment for retinoblastoma in children with an absent red reflex (New NICE recommendation for 2015)

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