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June 24 2012
All new parents in the UK will be informed about the warning signs related to eye cancer, following a successful campaign by a children’s cancer charity.
The warning signs of retinoblastoma will now be included in the Personal Child Health Record – also known as the red book – which is distributed to new parents following the birth of a child, the Childhood Eye Cancer Trust (CHECT) has confirmed.
The charity fought a year-long battle, which called on the Department of Health to publish information on the signs of the disease in publications aimed at parents.
Currently, the majority of children who suffer from the rare eye condition will lose one or both eyes as a result of late diagnosis due to a lack of awareness amongst parents.
A spokesperson for CHECT told OT: “Our advice if anyone ever spots anything unusual in their child’s eye is to go to an optician or GP and get it checked out as soon as possible. We strongly encourage regular eye checks for children prior to starting school, with the same regularity as we are encouraged to take our children to the dentist. That way, any early vision problems can be identified earlier on, increasing the prospects of retaining as much useful vision for the child as possible.”
Childhood cancer retinoblastoma is a rare condition, which generally affects the eyes from birth to the age of six, with around 40-50 cases diagnosed in the UK annually.
Until now, there has not been any official published information on the signs and symptoms of retinoblastoma to alert parents to seek help if they notice anything unusual.
Joy Felgate, chief executive of CHECT, said: “Early diagnosis is essential to offer the child the best chance of saving their sight and their eyes – parents need this information to enable them to act immediately if they notice the symptoms in their child’s eyes.
“We are delighted that the importance of this information for parents has been recognised and our recommended changes have been approved.”
The campaign, which was launched in May last year, gained support from Vision Express, parenting website Mumsnet and MP for East Hampshire Damian Hinds.
MP Mr Hinds lobbied ministers for the changes to be implemented on behalf of one of his constituents who experienced months of delays before her son was diagnosed with the condition. He said: “There is no responsibility greater than guarding a child’s health. But retinoblastoma is rare and many medical professionals, let alone parents, may not know what to look for.”
Mr Hinds added: “I welcome its inclusion in the red book as a much-needed tool to help ensure that affected children can get help early and avoid tragedy.”
Chief executive of Vision Express, Jonathan Lawson, commented: “This is a fantastic achievement for CHECT staff and members, who work tirelessly to raise awareness of eye cancer in children. Vision Express continues to support this worthy cause throughout its stores nationwide.”
Co-founder and CEO of Mumsnet, Justine Roberts, added: “I’m delighted that Mumsnet has had the opportunity to highlight the issue of retinoblastoma through working with CHECT. The more that parents can be alerted to the first signs of eye cancer the better chance they have of saving their child’s sight.”
The charity has confirmed that it will continue to lobby for information on the symptoms of this eye disease to be included on the ‘Birth to Five’ and NHS Direct websites.
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