Every new parent in the UK will soon be told about the subtle warning signs of a deadly eye cancer, after a prolonged campaign by a children’s cancer charity.

The Childhood Eye Cancer Trust (CHECT) has conducted a year-long campaign, backed by Damian Hinds MP, parenting website Mumsnet and high street optician Vision Express, calling on Department of Health approved publications aimed at parents to publish information on the signs of retinoblastoma.

Now the warning signs of this fast-growing eye cancer will be included in each new copy of the Personal Child Health Record (known as the red book or PCHR), distributed to every parent in the UK upon the birth of their child.

Welcoming the news, the charity said parents will now have a fighting chance of seeking medical help for their child in time to save their sight and eyes. Currently the majority of children with the rare eye cancer will have to lose an eye, and occasionally both, in order to save their life. This is often because diagnosis comes too late for alternative treatments.

Until now there has been no official information on the signs of the disease available to alert parents to seek help if they notice a symptom of this rare, but aggressive, eye cancer.

The charity said it is particularly vital for parents to be aware of the symptoms in the case of children with retinoblastoma as most show no other signs of illness despite having a life-threatening disease.

Joy Felgate, chief executive of the Childhood Eye Cancer Trust (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 the importance of this information for parents has been recognised and our recommended changes have been approved.”

The campaign, launched last May, gathered thousands of signatures online using Twitter and Facebook to garner support.

Damian Hinds, MP for East Hampshire, lobbied ministers for the changes to be made on behalf of CHECT member and constituent Katy Bishop, who spearheaded the campaign after the diagnosis of her own baby son, Owen, was delayed by several months.

Mr Hinds 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. Katy Bishop has worked tirelessly to turn the painful experience of her own family to helping others catch the signs earlier. 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.

“As an MP I have been hugely impressed by the hard work Katy has done to bring this issue to light and see change brought about. As a parent I am grateful to her, and the Childhood Eye Cancer Trust, for making such a difference.”

Katy, from Petersfield, Hampshire, said: “If we’d have known that a glow in his eyes in a photograph could be something to be concerned about we would definitely have pushed for Owen to have been seen sooner. I am so relieved that future parents will have this information to hand – it will make a real difference to children diagnosed with retinoblastoma in the future.”

Mumsnet added its support to the campaign by promoting it on the popular parenting website during National Eye Health week in June last year. Justine Roberts, Mumsnet Co founder and CEO said: “I’m delighted that Mumsnet has had the opportunity to highlight the issue of retinoblastoma through working with the Childhood Eye Cancer Trust (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.” 

Jonathan Lawson, chief executive at Vision Express, added: “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.”

Retinoblastoma is a childhood cancer generally affecting eyes of children from birth to six years old. A tumour can develop as cells mutate within the eye or eyes during rapid growth periods in the early years. The disease is rare, with 40-50 cases diagnosed in the UK each year, but it can be life-threatening.

The charity will continue to lobby for information on the symptoms to be included in the Birth to Five and NHS Direct websites. More information on retinoblastoma and the work of the charity is available at 

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