Notice
Information for professionals
This page offers factual information for medical professionals which has been verified by the clinical teams at the two NHS retinoblastoma treatment centres in the UK – The Royal London Hospital and Birmingham Children’s Hospital. It contains advice on recognising the signs of retinoblastoma (Rb) as well as vital information regarding the care of adult patients who had Rb as a child.
World Rb Awareness Week May 12-18, 2013
Figures released from the Childhood Eye Cancer Trust (CHECT) show babies and young children are facing serious delays in receiving life-saving treatment because their symptoms are being missed by frontline health professionals.
The trust has now launched a new awareness campaign after information gathered by the charity on children diagnosed with retinoblastoma (Rb) in the UK in 2012 found 72% of GPs did not make an urgent referral, as recommended in the NICE guidelines.
Read the the full press release here and find out more about our campaign.
This year's focus for Rb week will be on reminding health professionals about the signs of Rb and the need for an urgent referral if retinoblastoma is suspected. When we spoke to parents of children diagnosed with retinoblastoma in the UK during 2012 we found more than 70% had experienced a delay in diagnosis.
We have developed a toolkit for professionals which we are happy to send out to your surgery or clinic. Inside each pack you will find:
- A letter to your practice manager outlining the campaign
- A laminated red reflex test poster
- A squint challenge leaflet
- Retinoblastoma leaflet for professionals
- Posters for your waiting areas
We would be happy to arrange for a member of the charity to give a brief presentation to your team if you wish. If you would like a pack or can help us distribute them in your area, please contact us for more information at This e-mail address is being protected from spambots. You need JavaScript enabled to view it.
Optician protocol
Our corporate partner Vision Express has been working closely with CHECT developing a new protocol for opticians to ensure all members of store staff offer parents the correct information about who to seek help from and when. The protocol, approved by CHECT's medical advisor Mr Ashwin Reddy, Consultant Paediatric Ophthalmologist and Retinoblastoma Surgeon at Barts Health NHS Trust, offers clear information on what action to take if a parent is concerned by any of the main symptoms of Rb.
Vision Express will be implementing the protocol as soon as possible in all stores and CHECT is urging all other opticians to follow suit.
Jonathan 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 follow 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."
If your optician would like a copy of our protocol, you can download it here. Let us know if your practice is able to adopt this protocol and help with our battle against retinoblastoma.
Pre-diagnosis
There are six main warning signs of retinoblastoma – a child with Rb could have one or more of these signs. Retinoblastoma is rare but is a fast-growing cancer and early diagnosis is crucial to preserving the sight and the life of the child. Following a campaign by the Childhood Eye Cancer Trust the warning signs will now be listed as a reason to seek medical advice in all new copies of the Personal Child Health Record (red book).
What to look out for:
A child with retinoblastoma (Rb) usually shows no other signs of illness. The symptoms of Rb can be very subtle so it is extremely important to take parents’ concerns seriously when they report seeing something unusual in their child’s eye or eyes. Retinoblastoma usually, but not exclusively, affects children aged 5 and under. The six warning signs to look for are:
A white reflex (leukocoria): A white eye, white pupil or white reflection can be seen in a photograph where the flash has been used. Often one eye will have "red eye" which is normal but the other eye may look white, yellow or orange. This may be seen in just one or many photographs of the child.
A white 'reflex' or white eye/pupil may also be seen when the child is in artificial light or a darkish room. Some parents say that it looks like a cat's eye caught in light or that they think they can see the back of their child's eye, other parents say it looks like jelly. This white reflex may only be seen every so often but in some cases it is present all the time.
An absence of "red eye" in flash photographs: In a photograph where one eye has "red eye" (which is normal) the other eye may look black or looks "wrong".
A squint: A squint is the second most common sign of retinoblastoma. It is important to carry out a comprehensive red reflex test in squint cases before ruling out Rb.
Red, sore or swollen eye without infection: A child's eye may become very red and inflamed for no reason. This sign is usually linked with other signs.
A change in colour to the iris: The iris, the coloured part of the eye, can sometimes change colour in one eye, sometimes only in one area.
Deterioration in vision: A child may have deterioration in their vision or they may have had poor vision from birth. You may notice the child does not focus or fix and follow as well as they should.
A simple red reflex test can help you to determine whether a child needs to be referred for specialist examination. Click to see full size pdf of poster.
The Childhood Eye Cancer Trust's Red Reflex Test poster has been designed to inform any health professional on how to correctly perform a red reflex examination. It has been recognised by many health practitioner educators as a tool to use to teach this examination. It has also been recreated, with permission, throughout the world.
What to do next
If you are unable to confidently rule out retinoblastoma with a red reflex test NICE guidelines state an urgent referral must be made for children with:
- a white pupillary reflex (leukocoria). Pay attention to parents reporting an odd appearance in their child’s eye.
- a new squint or change in visual acuity if cancer is suspected.
- a family history of retinoblastoma and visual problems. (Screening is necessary from birth.)
Urgent referrals should be made to the local ophthalmology department. We recommend you call through to alert them to this case and to find out the speed with which their urgent referrals are seen (in some cases it can be longer than two weeks).
Download our leaflet on retinoblastoma for health professionals
You may also find the following Childhood Eye Cancer Trust article helpful:
Carter, J (2009) Recognising the signs of retinoblastoma. Practice Nursing 20(8): 394–397.
Supporting patients who had Rb
A percentage of Rb patients will have an increased risk of developing second primary cancers. Patients should be monitored for any worrying or persistent problems such as unexplained lumps or pains, new skin moles or changes to an existing mole.
Anyone who has had Rb should be monitored to detect and manage any long-term problems caused by the disease or treatment in order to ensure the best possible quality of life.
For more information on caring for an adult who had Rb as a child click here.
You may find the following Childhood Eye Cancer Trust articles helpful:
Carter, J (2010) Supporting patients after retinoblastoma. Practice Nursing 21(1): 38-40.
Genetics
Adults who had Rb as a child may require genetic screening when planning a family. For more information on the genetic implications of retinoblastoma visit our genetics section where you will find more information for your patient on the importance of screening in some circumstances.
There are two pages you may wish to direct your patients to especially:
Planning a baby
Screening your child
Other issues
Any medical issues related to retinoblastoma and follow-up can be directed to the specialist teams at the Royal London Hospital or Birmingham Children’s Hospital. For more information on these specialist retinoblastoma (Rb) services follow the links below to the hospital sites and genetic screening units.
Royal London Hospital retinoblastoma service
Royal London Hospital retinoblastoma genetic screening unit
Birmingham Children's Hospital retinoblastoma service
Click here to download the I Spy Awareness Leaflet
We have A4 posters which can be displayed and A5 leaflets which can be distributed widely or put into leaflet racks. Download them from the link above or contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it. about sending you printed copies for your waiting rooms.
Published articles written by the Childhood Eye Cancer Trust (CHECT)
Carter, J (2009) Recognizing the signs of retinoblastoma. Practice Nursing 20(8): 394–397.
Click here to download this article
Carter, J (2010) Supporting patients after retinoblastoma. Practice Nursing 21(1): 38-40.
Click here to download this article
Carter, J (2009) Retinoblastoma - The issues faced by adults who had retinoblastoma as a child, GP Magazine 17/04/09: 41-43.
Carter, J (2011) Retinoblastoma - The issues faced by adults who had retinoblastoma as a child, GP [online]
Avaliable at: http://www.gponline.com/Clinical/article/897922/Retinoblastoma/ [Accessed 14/07/2001]
Click here to download this article
Halford, L et al. (2008) Retinoblastoma for life. Focus - Royal College of Ophthalmologists Summer: 5-6.
