CHECT appeals Birth to Five book decision

Campaign update

The Department of Health is reconsidering the Childhood Eye Cancer Trust's proposal for the signs and symptoms of retinoblastoma to be included in the Birth to Five book.

The Childhood Eye Cancer Trust (CHECT) appealed an initial decision not to include the information and has been informed by the Dept of Health that the team responsible will look again at the proposal.

The book, given out to every new parent by the Dept of Health currently only has limited information about child eye health - geared towards vision concerns.

Earlier this year CHECT urged the team behind the publication to include advice for parents to get their child's eyes checked immediately if they spot any of the following symptoms: white reflection in pupil (either in a photo or with the naked eye): absence of red eye in one eye; squint; change in colour of the iris; red or swollen eye without infection or a deterioration in vision.

The DoH team initially rejected the request and added: "While we acknowledge more needs to be done to raise awareness of the signs and symptoms of rarer cancers and to encourage earlier diagnosis of rarer cancers, there is a danger that adding advice on a very rare childhood cancer could unduly alarm and upset new mothers."

CHECT is still awaiting news on inclusion of the information in the Personal Child Health Record (red book) and on the NHS website.

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CHECT chief executive Joy Felgate said: "One of the reasons why this cancer is such a special case is because there are almost always no signs of illness in the child which would otherwise prompt the parent to go to the doctor.

"A child's life is at risk from this disease if left untreated and yet they wouldn't know until it was in the advanced stages yet there is no public health information out there guiding parents to seek help. Parents need to know about the signs of this life-threatening condition so that they act on their first concern if we are to avoid children having their eyes removed as a result of this fast-growing cancer."