CHECT celebrates first campaign success
Eye cancer campaigners mark first victory
The Childhood Eye Cancer Trust is celebrating its first campaign victory after much-needed information on retinoblastoma was published by the NHS. CHECT launched a campaign urging the Dept of Health to publish details after parents complained they were being left in the dark over the life-threatening disease.
Now, after working with the content team at NHS Choices website, general information on retinoblastoma is finally available to the public. The trust turned to the social networking site Twitter (@ChectUK) to build support for its online petition, gaining an additional 1,000 signatures in just a few weeks.
CHECT member Katy Bishop, whose son Owen was eventually diagnosed with bilateral retinoblastoma after a five-month delay, is spearheading the campaign for change.
Katy, from Petersfield, Hampshire, said: "If we'd have known that a glow in his eyes or a strange reflection in his pupils in a photograph could be something to be concerned about we would definitely have pushed for Owen to have been seen sooner.
"We looked in the red book (Personal Child Health Record) and the Birth to Five book and there's nothing in there at all to indicate there was anything to be worried about."
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 can be life-threatening.
Joy Felgate, chief executive of CHECT welcomed the move by NHS Choices but said work to inform parents had not gone far enough.
She added: "We are delighted to see our efforts working alongside NHS Choices have paid off but this is only one access point to information for parents. Now we must ensure the Birth to Five website, PCHR and NHS Direct sites follow suit. Parents have a right to this information to enable them to act immediately if they notice the symptoms in their child's eyes.
"What makes our case exceptional is that children with eye cancer will usually show no other sign of illness so unless these subtle symptoms are flagged up parents have no way of knowing their child’s life is at risk."
The majority of children with retinoblastoma will go on to lose an eye and CHECT believes the earlier a child is diagnosed the more chance there is of saving the eyes and sight of the child. To support the ongoing campaign take two minutes to sign our online petition at http://www.gopetition.com/petitions/publish-signs-of-childhood-eye-cancer-retinoblastoma.html .
The NHS Choices information on retinoblastoma can be found here .
