Publish signs of childhood eye cancer (retinoblastoma)

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Retinoblastoma is a life-threatening eye cancer which develops in children from birth to around six years. The condition is often diagnosed late when the tumour/s have had time to grow extensively within the eye.

In the UK it is treatable but, often, more aggressive treatments are needed - in many cases the treatment used for these large tumours is to remove the whole eye (enucleation) sometimes with follow-up chemotherapy.

Children go on to endure invasive check-ups, initially under general anaesthetic, throughout childhood. Many children face the challenges of living with an artificial eye. The result of late diagnosis for many children is loss or partial loss of vision.

An early diagnosis would lead to a greater choice of treatment options for many children and more aggressive treatments may not be necessary.

The signs of retinoblastoma can be spotted by a parent. If a parent was aware of the significance of these signs they could seek medical help sooner, reducing the chance of the child losing an eye and therefore saving some sight.

There is currently no information provided by the Department of Health for parents in the Birth to Five book or website or on NHS Direct online which alerts parents that there may be a serious problem with their child’s eyes.

Since our campaign started however, every newly-printed Personal Child Health Record (known as the red book), will now warn parents to take action if they see one of the signs of retinoblastoma and the NHS Choices website has also now included information on the condition. With your support we can make sure NHS Direct and Birth to Five also publish this vital information.

There are a number of signs of retinoblastoma - amongst these are;
A white/yellow/orange reflex in the pupil/s, which may be noticed in artificial light or in flash photography.
A squint
A change to the colour of the iris in one eye.
A red and swollen eye with or without the presence of infection
An absence of ‘red eye’ in one eye in a photo.
Deterioration in vision.

Unlike other serious childhood illnesses, there may be no other obvious symptoms that the child has cancer. Only awareness of the signs will prompt the parent to seek help.

It is possible for a GP to do a simple, non invasive, 'red reflex' test to identify abnormalities in the retina and make a referral if found. Equally a red reflex test can be used to rule out serious illness if no abnormality is present and concerned parents can be reassured.

We propose simple changes to Department of Health information for parents, which would also alert the parent to other serious eye conditions such as nystagmus, cataract and Coat’s disease as well as retinoblastoma (childhood eye cancer) and give them the confidence to approach their GP with their concerns.

In a survey conducted by the Childhood Eye Cancer Trust in May 2011 with 1,001 parents of children under 6 years old, over 70% said they would like more information to be available. Now we need your support to help make this happen.

Department of Health publications are highly valued by parents and, of those surveyed, 75% of parents said they would look for information about serious eye conditions in the documents/sites mentioned above.

The Childhood Eye Cancer Trust
The Royal London Hospital
Whitechapel Road
London E1 1BB

0207 377 5578.
www.chect.org.uk