Barry attended a parliamentary reception on retinoblastoma, an aggressive form of eye cancer in children. Whilst there he met with his constituent, Hannah, who was born with this horrible illness. After meeting with Hannah he wrote this letter to all GPs and Opticians in Brent North. If you are the parent of a young child and you see any of the symptoms listed in this letter in your child then I urge you to visit your local Opticians or GP.
Retinoblastoma
You may wonder, you may even feel somewhat irked, that I am writing to you about retinoblastoma — a condition which you undoubtedly know much more about than I do as your local MP. I certainly would not be writing to all the GPs and opticians in Brent North if it had not been for meeting Hannah who is a constituent of mine and whose personal story below I hope might help you in your professional life.
I had no idea that this aggressive form of eye cancer affects 1 child a week in the UK until I met Hannah. These are her own words:
“My name is Hannah, I am 23 and have lived in Brent for most of my life. I was born with a rare childhood eye cancer, bilateral retinoblastoma. It was diagnosed at quite an advanced stage due to a lack of awareness of the cancer and its symptoms: the doctors kept sending my parents away saying there was nothing wrong. By the time I was diagnosed, my left eye had to be enucleated and I underwent numerous courses of chemotherapy, radiotherapy and cryotherapy to save only around 3-6 per cent of my sight in my remaining right eye. If it was diagnosed sooner, I would have probably had more eyesight and not had to undergo so much treatment.
At the age of 16, I had genetic counselling and was told my options in terms of having children in the future, as well as the secondary cancers I am at risk of developing and what to look out for. I have faced cancer scares in the past and have been told by a former GP that I could not be sent for an MRI scan because it was too expensive. But I have also had very supportive doctors around me throughout my life who have helped me through some very difficult times, and for that I am eternally grateful.
Despite all of this, I managed to get to university, achieve a First Class Honours in Politics and am now pursuing a full-time career to make a positive difference.
I cannot change the outcome I have been left with as a result of my late diagnosis but I want outcomes for any future babies or children to be the best they possibly can. One child a week is diagnosed with retinoblastoma, so you may never come across this in your career but there is still a chance you will. Please take a few minutes to review the signs and symptoms in the enclosed leaflet, because you could be the one to spot it and save someone’s sight and life.”
Through Hannah, I was made aware of the vital importance of an early diagnosis. If it is diagnosed early, it can often be successfully treated. However, low awareness of the signs and symptoms among parents and healthcare professionals means that many families experience potentially devastating delays in diagnosis, and around a half of children lose an eye to save their life.
I was informed that one such reason for early detection not taking place is parents being turned away from opticians by front of house staff, and told their child is too young for an eye test. It is therefore essential that ALL staff are made aware of the condition and how to spot it, so it can be properly diagnosed early. The signs and symptoms of retinoblastoma include:
an unusual white reflection in the pupil – this may be apparent in photos, where only the healthy eye appears red from the flash, or you may notice it in a dark or artificially lit room
a squint
a change in the colour of the iris – in 1 eye or sometimes only in 1 area of the eye
a red or inflamed eye – although the child won’t usually complain of any pain
poor vision – the child may not focus on faces or objects, or they may not be able to control their eye movements (this is more common when both eyes are affected); they may say they can’t see as well as they used to.
If parents come to opticians with any of these symptoms for their children, then they must not be turned away. Instead, they should be immediately referred to a GP for appropriate tests.
Thank you for taking the time to read this letter and I urge you, if you have not done so already, to take measures to ensure all staff are aware of the signs and symptoms of retinoblastoma, so we can prevent more children having to suffer as Hannah did.
Yours sincerely
Barry Gardiner
