It is the time of year when we look back at what has happenedthe previous year. The information we collect is through gently asking parents of recently diagnosed children how their child came to be diagnosed with Retinoblastoma and the route the parent has taken to this diagnosis.We do this is because a quick referral toone of the two UK centres of Rb excellence could mean the difference between saving a child’s eye and sight or having to remove the eye to save their life
I'm sure you can appreciate that retrieving this information from parentshas to be done delicately and empathetically, sometimes there is never a right time for our support workers to ask a parent this, sometimes it is a too traumatic period in the parents lives to go over it again.
Because Retinoblastoma is such a rare disease often family doctor's do not recognise the symptoms and dismiss the parents concerns. Often parents have thought they have seen something odd but dismissed it as a trick of the light, not to see it again for several months. Can you imagine the feelings of guilt a parent who hadn't acted sooner or hadn't asked for a second opinion experiences? No amount of reasurrance will alleviate that pain.
However from the information we collect from parents we know that the awareness raising of the signs and symptoms of this disease (and no one else in the UK is doing this) is slowly making a difference.
CHECT’s awareness raising has reduced the referral time from 9 weeks in 2012 to 6 weeks last year. But there is still more to do to reduce this further - we are aiming for2 weeks. Your support is helping us shorten this time andhelping to save a child's sight, eyes or in extreme cases, life. Thank you.
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