Childhood Cancer Awareness Month 2014
In 2014 Childhood Cancer Awareness Month was moved from December to September in the UK. To mark this month we are asking supporters to get behind CHECT and make the most of this opportunity to raise both awareness of the signs of Rb and vital funds to help us provide the best support possible.
Why CHECT needs your help
CHECT faces an ongoing challenge to raise awareness of Rb - and social media can be a powerful tool to help reach these goals. CHECT needs your support to increase followers on Facebook and Twitter so that an ever-increasing number of people can in turn pass on our awareness messages to:
- Help educate other parents and carers about the signs of Rb and what to do next
- Empower parents with knowledge so that a child may never be turned away without proper examination
- Remind health professionals of the importance of the red reflex in cases where signs of Rb may be present
- Urge health professionals to take parents' concerns seriously
CHECT is a small charity, which receives no government funding and relies heavily on supporters to fundraise for the services we offer. CHECT needs your fundraising support during CCAM to:
- Ensure there are support workers to hand when those affected by retinoblastoma need them most.
- Provide a comprehensive support service for teenage members living with the life-long effects of treatment for Rb
- Offer families and individuals affected by Rb the chance to meet up, whatever stage of their life they are at, so they do not feel isolated by the effects a rare condition can bring.
- Create vital awareness resources so parents and carers can find out more about the signs of Rb in the hope they may access help for their child sooner.
- Extend the health professionals campaign so concerned parents are never turned away without their child receiving a thorough examination to rule out Rb first.
- Support ground-breaking research projects to improve treatments and eradicate the condition.
How can you help?
There are two main ways you can get involved with CCAM.
SHARE, SHARE, SHARE!! There are four things you can do to help raise awareness online during CCAM:
- Change your Facebook/Twitter profile picture to the special gold CHECT logo (see right) during September, to show your support and raise awareness among family and friends.
- Post the link to CHECT's awareness video - Earlier this year we were lucky enough to be given the opportunity to create a new awareness film which renowned comedian and Rb survivor Caroline Aherne kindly gave up her time to do the voiceover for. Please share the link to this short film with as many people as you can. Rosie has retinoblastoma
- Post the link to the signs and symptoms page of the CHECT website and challenge your friends and family to do the same - passing on this information can make a real difference to educating people about Rb.
- If you know a GP, health visitor or optician, you could also share the link to the Information for professionals page to remind them what to look out for and how to test for Rb - after all, Rb is rare and many healthcare professionals never come across a child with Rb in their lifetime.
Ask your friends and family to make a small text donation to CHECT during CCAM. Every little really does make a difference, especially to a small charity like CHECT. Why not hold a coffee morning and invite guests to make a text donation in return? To make a donation in this way text GOLD27 £3/£5/£10 (whatever amount you can manage) to 70070. The amount will simply be added onto your next mobile phone bill.
If you're looking to get involved in an active challenge the Carrots Nightwalks take place throughout September in London (September 19), Birmingham and Bristol (September 26). More information on the nightwalks which raise money for Rb research, is available here.
Thank you for any support you can offer during Childhood Cancer Awareness Month - it is much appreciated by everyone at CHECT.
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.