A children's cancer charity is launching a bold new awareness campaign for World Retinoblastoma Awareness Week (10-16 May) as new figures show less than half of children with eye cancer receive the urgent referral NICE recommends.

Three-year figures released today from the Childhood Eye Cancer Trust (CHECT) show that just 44% of children diagnosed with rare eye cancer retinoblastoma between 2012 and 2014¹ received an urgent referral when their parents sought help from frontline healthcare professionals.

Retinoblastoma (Rb) is a fast-growing cancer of the eye affecting mainly 0 to 5-year-old children. Early detection of this aggressive condition is crucial to offer the child the best chance of saving their vision, their eyes and their life.

CHECT figures show that:

  • Less than a third (31%) of GPs who saw a child with Rb made an urgent referral
  • 100% of opticians who saw a child with Rb referred appropriately. However, problems are still occurring where some optical practices are still reluctant to accept small children for examination
  • Less than half of health visitors appropriately referred a child later diagnosed with Rb

Leukocoria, a (intermittent) white pupillary reflex notice in dim lighting or a photo was the main symptom of Rb in over 65% of cases. A squint is the second most common symptom, and was present in almost a third (29%) of babies and young children diagnosed with Rb between 2012 and 2014.

Every case of leukocoria and squint and must be checked with a simple, non-invasive red reflex test. If you are unable to confidently rule out retinoblastoma, NICE guidelines state an urgent referral must be made to the local ophthalmology department.

Other symptoms include:

  • A change in colour to the iris
  • A deterioration in vision

Occasionally a retinoblastoma may present as a red, sore or swollen eye without infection. It is important to remember, however, that a child with Rb may appear systemically well.

Joy Felgate, Chief Executive of CHECT said: "We have known for years that most families suffer unacceptable delays in getting a diagnosis for childhood eye cancer. Since 2012 we have been gathering information from our discussions with families, to gain a clear picture of the problems parents face because many frontline health professionals are not recognising the signs of retinoblastoma. As Rb is rare only a small number of children are diagnosed each year, but we now have information detailing the experiences of over 100 families, which gives us a much better idea of the challenges families are facing, and where the delays are occurring."

"When a child develops a life-threatening condition we feel the least they should expect is for their frontline health professional to recognise there is a problem and to ensure they receive access to life-saving treatment as soon as possible. This level of care shown in our figures is just not good enough when the life and sight of babies and children is at stake. It is crucial that health professionals recognise the main warning signs as a child with Rb may otherwise appear well."

The latest campaign from CHECT, created by Wunderman, parodies advertising by popular smart phone manufacturers and urges viewers to use their phones for more than gaming and social media. Instead, the ads encourage people to put their phones to better use, and help detect and defeat Rb.

CHECT's campaign draws its inspiration from real-life cases such as that of Arwen from Lincolnshire, where a smartphone photo prompted her mother to seek urgent help. Arwen's mother noticed that a picture on her phone showed one eye with a white rather than a red reflex and used this to discover the symptom could mean a tumour.

Arwen was referred to a specialist. Arwen's mother said: "She confirmed there was a growth in Arwen's left eye and made an appointment three days later at Birmingham Children's Hospital where the definitive diagnosis of retinoblastoma, grade D+ was made. At this stage we found ourselves making the heart-breaking decision to have the affected eye removed."

Since the operation to remove her eye, Arwen has made a full recovery and is now a happy and contented child coming up to her first birthday.

These figures have been released to support World Retinoblastoma Awareness Week 2015 which runs from 10-16 May 2015.

The signs of Rb include

  • Leukocoria - (intermittent) white pupillary reflex noticed in dim lighting or a photo.
  • Strabismus - squint (retinoblastoma must be ruled for all cases of squint in babies and children using a red reflex test)
  • A change in the colour of the iris or part of the iris.
  • Inflammation, redness or increased pressure in or around the eye without an infection.
  • An absence of red reflex when doing a red reflex test.
  • Deterioration of vision in one or both eyes or poor vision from birth.
  • Wandering eyes (nystagmus).
  • Parental history of retinoblastoma - the condition is heritable so children of an affected parent with retinoblastoma must be screened from birth.
  • Parental concern over vision or eye appearance.