In September 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.
For more information on past campaigns and how you can help raise awareness, click here.