Rb is a fast-growing cancer of the eye, which mainly affects children under five. Around 40-50 children are diagnosed with Rb in the UK each year.
The trust has launched an awareness campaign after information gathered by the charity on children diagnosed with retinoblastoma (Rb) in the UK in 2012 found that 72 per cent of GPs did not make an urgent referral as recommended in the NICE guidelines.
Misdiagnosis ranged from conjunctivitis to a lazy eye, or in some cases it was dismissed completely. Referral times also varied, from two weeks to more than six months.
Many children will need at least one eye removed as the cancer is too advanced for other treatments by the time they are diagnosed. Early detection is crucial to saving the child's vision.
The launch of CHECT's campaign coincides with World Retinoblastoma Awareness Week running from 12-18 May.
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 of Rb.
'When a child develops a life-threatening condition we feel the least they should expect is for their frontline health professional to recognise there is a problem and to ensure they receive access to life-saving 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. It is crucial that GPs recognise the six main warning signs as a child with Rb may otherwise appear well - which is why our new campaign is so important.'
Of the health professionals involved in diagnosis, five out of five opticians, two out of three health visitors and 14 out of 50 GPs made the appropriate referral.
A toolkit for health professionals will be distributed to surgeries and clinics around the country, highlighting the main symptoms and the important of an urgent referral.
Vision Express has adopted a referral protocol within stores, which will be implemented as soon as possible.
Jonathon Lawson, CEO at Vision Express, said, 'Retinoblastoma is a debilitating illness that can affect very young children. However if action is taken sooner rather than later, there is a chance its effects can be minimised. The protocol developed by CHECT will ensure all our optometrists and wider staff follows an agreed, uniform set of actions in order that any potential cases can be identified and dealt with as quickly as possible. We hope that other opticians will follow in our footsteps and agree to roll out this protocol across their businesses to ensure we can collectively tackle the disease head on.'
Ashwin Reddy, consultant paediatric ophthalmologist and retinoblastoma surgeon at Barts Health NHS trust and medical advisor to CHECT, said, 'This important work carried out by the Childhood Eye Cancer Trust highlights the need for frontline health care professionals to be more aware of the symptoms of retinoblastoma. For a disease where early diagnosis has such a huge impact on the types and success rates of treatment used, I wholeheartedly support CHECT's efforts to raise awareness this way.'
CHECT's statistics were gathered from the parents of 39 children, out of 46 in total, who were diagnosed in 2012.