Childhood Cancer Awareness Month 2013
For Childhood Cancer Awareness Month in 2013, we urged our supporters to use this opportunity to raise awareness of the signs of Rb by sharing a selection of E-cards on their social media feeds throughout the month. Each card showed a different message, providing a powerful image with which to educate others about the warning signs to look out for. The campaign was a great success thanks to our supporters and reached more than 150,000 people on Twitter and Facebook.
National Eye Health Week: College of Optometrists supports CHECT opticians' protocol
During National Eye Health Week (16 - 22 September 2013) CHECT urged opticians across the UK to adopt its opticians' protocol. Our records show that in general opticians are correctly referring on children with suspected retinoblastoma (Rb). However, some children face delays in obtaining appointments, or are turned away by staff unaware of the signs and symptoms of the disease and the need for urgent examination.
We want to ensure that no child displaying signs of retinoblastoma is turned away from an optician without the correct information about where to go next. CHECT’s protocol aims to address this by stating that all optician staff should be aware of the main signs of Rb. Approved by CHECT’s medical advisor Mr Ashwin Reddy, Consultant Paediatric Ophthalmologist and Retinoblastoma Surgeon at Barts Health NHS Trust, it offers clear information on what action to take if a parent is concerned by any of these main symptoms of Rb.
Speaking in support of the protocol, Dr Kamlesh Chauhan, President of the College of Optometrists said: “Retinoblastoma is a rare but very serious condition. We therefore encourage all our members to ensure they and their practice staff are aware of the most common signs so they can ensure a swift assessment of the child.”
You can download the protocol here. Let us know if your practice is able to adopt this protocol and help with our battle against retinoblastoma at
Rb Awareness Campaign 2013: Health Professionals
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.
Our focus 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
Changes to Red Book
Following a campaign by the Childhood Eye Cancer Trust, the warning signs of retinoblastoma will now be listed as a reason to seek urgent medical advice on p18 of all new copies of the Personal Child Health Record (red book).
NHS Choices publishes signs of Rb
In September 2012 we were contacted by the Department of Health who informed us that, as a result of our campaign, information on the signs of retinoblastoma had now been included in a prominent and relevant section of the NHS Choices website.
The information has been uploaded into the pregnancy and baby section of the site, where concerned parents are now directed for more information on symptoms of serious illnesses
A fantastic result for everyone involved in the campaign !
During the last 18 months you kindly supported our campaign to raise awareness of the signs and symptoms of the childhood eye cancer retinoblastoma, by signing our petition.
We are thrilled to say that we have had significant success since our campaign was first launched in May last year.
Firstly, the NHS Choices website has now produced a page with information on retinoblastoma, the symptoms and where to seek help, as well as direct links to the Childhood Eye Cancer Trust for further information. We are delighted that NHS Choices has recognised the importance of keeping parents informed and also that they have been able to endorse CHECT in this way by directly linking to our website.
This success was followed by the exciting news in June this year that the Institute of Child Health wholly accepted our recommendations for changes in the Personal Child Health Record (known as the PCHR or Red Book) which is distributed to every new parent in Great Britain. This means the signs of retinoblastoma will now be flagged up as a reason for concern, signposting parents to seek help if they see something unusual.
We have continued to lobby for changes to the Birth to Five website and book and also to the NHS Direct website.
However, we have recently become aware that, as a result of fundamental changes within the Department of Health, further revisions to Birth to Five content and NHS Direct are no longer able to be made. The DoH’s future plans for all three vital sources of information remain unclear at this time. Until this situation changes the Childhood Eye Cancer Trust has taken the decision to concentrate its limited resources into its healthcare professional awareness campaign, primarily targeting GPs and health visitors.
As soon as the future of Birth to Five and NHS Direct is clarified we will of course again review our campaign and will keep you updated.
Thank you for all your help in pushing this issue up the agenda and contributing to the huge success we have achieved in this area – raising awareness will always be one of our key objectives and we remain grateful for your support.
We are working hard to develop an awareness programme for healthcare professionals which aims to reduce delays in diagnosis. The focus of this is to ensure frontline health professionals know the signs and symptoms of Rb, how to check for them and make a rapid referral where necessary. We will keep you posted on progress and value your support to make this programme as successful as the Department of Health campaign has been.
The I Spy campaign has been our most dramatic yet – with a reaching question and a dramatic image feedback on our new poster design has been very positive. We were lucky enough to have support from Boomerang media who helped display bus stop sized posters in soft play houses around the country. This image went on to adorn our business cards, A4 and A3 posters and our A5 awareness leaflets.
More information about previous campaigns and other ways in which you can help inform others about the symptoms of childhood eye cancer.