Babies and young children are facing serious delays in receiving life-saving treatment because symptoms are being missed by frontline health professionals, Childhood Eye Cancer Trust (CHECT) figures have shown.
The trust has launched an awareness campaign after gathering information from 85% of families diagnosed with the fast-growing eye cancer, Retinoblastoma.
The research shows last year 72% of GPs did not make an urgent referral, as recommended in the NICE guidelines.
Retinoblastoma is a fast-growing cancer of the eye affecting mainly 0 to 5-year-old children.
At least one eye removal is necessary for sufferers for whom diagnosis was made too late.
Misdiagnosis ranged from conjunctivitis, to a lazy eye or in dismissed completely, the study has found; referral times also varied widely, from the recommended two weeks to, in some cases, six months to be correctly diagnosed.
Joy Felgate, chief executive of CHECT, said: "We have known for years that most families suffer unacceptable delays in getting a diagnosis for childhood eye cancer. From the discussions we have conducted with the majority of parents whose children were diagnosed in 2012, it appears the number of delays is worse than we feared.
"This is just the start of our work to gather a firm picture of the problems parents face because some health professionals are not recognising the signs."
He added when a child developed a life-threatening condition basic expectations of frontline health professional was recognising the problem to ensure treatment as soon as possible.
"This level of care shown in the 2012 figures is just not good enough when the lives and sight of babies and children are at stake," Felgate said.
"It is crucial that GPs recognise the six main warning signs as a child with Retinoblastoma may otherwise appear well."
Of the health professionals involved in diagnosis that made the appropriate referral included; 5 out of 5 opticians; 2 out of 3 health visitors; and 14 out of 50 GPs.
The awareness campaign, a toolkit for health professionals and a new referral protocol for opticians are all part of the Trust's action planned.
Mr Ashwin Reddy, consultant paediatric ophthalmologist and Retinoblastoma surgeon at Barts Health NHS Trust and medical advisor to CHECT, said it was important that frontline healthcare professionals were more aware of the symptoms of Retinoblastoma.
