Childhood Eye Cancer Trust - Raising awareness of Rb
Lisa with son's Stanley and Ernie

This week is National Eye Health Week. To mark the event one of our trustees, Lisa Brown, explains how she has been able to use her role as a health visitor to raise awareness of retinoblastoma amongst her colleagues.

Childhood Eye Cancer Trust - Raising awareness of Rb
Lisa’s son Ernie

“Hello. My name is Lisa Brown. My younger son Ernie was diagnosed with bilateral retinoblastoma (Rb) when he was 3 months old. Despite a varied nursing career and being a health visitor I had never heard of retinoblastoma before, and this has made me passionate about raising awareness of Rb among health professionals. In my day job I am a health visitor but I am also a CHECT Trustee and member of the CHECT Health Professionals Forum.

The Health Professionals Forum is made up from volunteers including a midwife, optometrists, a paediatrician and a GP. We look at ways we can raise awareness among our colleagues nationally to get the message out about the signs of retinoblastoma and the importance of early referral and diagnosis.

Recently I was invited to speak to a health visitors conference where health visitors all across Essex come together to share examples of good practice. I was given 30 minutes to talk about the signs of Rb and why it is important to health visitors, I called the presentation “Retino-what?”

I wanted to challenge health visitors to incorporate simple questioning about eye health or white eye reflex and squint into their everyday health reviews.

Every child in the UK, from around two weeks old until they are five years old has a health visitor and I think it is important health visitors know how to spot Rb.

Health visitors are all qualified nurses or midwives who have completed a minimum of a year’s extra training in baby and child health and development. Every child is seen by a health visitor as a baby and then is offered health and developmental reviews by a health visitor at around one year old and again at two- and a-half years old.

Often the health visitor will be the first point of contact for parents with health concerns about their baby or young child, and we at CHECT unfortunately often hear stories of false reassurance from health visitors when children present to them with signs of Rb. This false reassurance can cause a delay in diagnosis, meaning children are not able to access the life-saving treatment they urgently need.

Childhood Eye Cancer Trust - Raising aware of Retinoblastoma
Raising awareness at the Health Visitors Conference

Squints are the second most common symptom of retinoblastoma but they are a tricky issue for health visitors. We do see a lot of children and babies with squints and many health visitors do not know this can be a sign of Rb, so I talked about how a proper red reflex test can help to decide if the squint may be caused by Rb. I discussed NICE guidance emphasising the need for urgent referral if concerned, and how a referral can be made on photographic evidence of a white eye reflex. I made them aware that NICE guidance also stresses the importance of listening to parents’ concerns.

There were some interesting questions about the role of opticians in diagnosing eye conditions in young children, and one health visitor said she had already arranged an urgent referral for a child with a white eye reflex as she had read an article I had previously written in one of the main health visiting journals!

I took along hundreds of CHECT leaflets for health professionals and quite a few posters from the latest awareness campaign.

The health visitors attending were from a wide variety of clinics and bases all over Essex, and each one was encouraged to take plenty of leaflets back to give to other health visitors and colleagues. They each took posters to put up in their clinics. Hopefully this will help to spread the word much further.”

If you are a health professional and would like to know how you can help raise awareness in your area, get in contact with petra.maxwell@chect.org.uk and we can let you know how.

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