Table 1.

Roles and responsibilities in the detection, referral and treatment of retinoblastoma

Individual responsibilities
Parent →	Health worker/nurse →	Ophthalmologist →	Specialist eye centre
Seek help urgently if you see something white inside the centre of the eye (the pupil) OR if you take a photograph and only one eye has a red dot in the centre Do not let anyone turn you away and do not take no for an answer until a doctor at a hospital has examined the child's eyes using a bright light	Believe the parents if they say they have seen something white inside the pupil and seek specialist advice. Treat it as a medical emergency Learn how to test the red reflex (p. 23). Test all children during routine visits and immunisations	Learn to recognise retinoblastoma and to identify eyes that need enucleation Counsel parents about the good cosmetic outcomes of enucleation with implantation. Show pictures of children with good outcomes Learn how to enucleate, taking more than 15 mm of optic nerve. Always examine the fundus of the fellow eye when you perform an enucleation: there could be a small tumour which is treatable by laser Refer all children with signs of retinoblastoma in two eyes to a national or specialist centre for urgent treatment	Same as for ophthalmologists, plus: Learn how to give focal or laser treatment to smaller tumours (usually in the second eye) Create multidisciplinary teams who work closely together to coordinate the treatment of each child Include in this team: ophthalmologists, oncologists, histopathologists, nurses, child life specialists or play therapists and/or counsellors Offer general and genetic counselling to parents/carers Refer parents to other sources of support for their child's learning and development
The Ministry of Health's responsibilities towards the above
Run public awareness campaigns so that parents know that treatment is possible and know when to see a doctor	Ensure that the red reflex test (p. 23) is included in the curriculum for nurses and health workers	Ensure there is at least one ophthalmologist per 100,000 population	Support the development of national retinoblastoma centres and referral networks. Offer subsidised access to specialist treatment for all children with retinoblastoma. Provide screening services for siblings and accommodation or travel subsidies for the parents or carers of these young children.