Take action to help your local hospital
Everyone diagnosed with bowel cancer should be tested for Lynch syndrome - a genetic condition that dramatically increases the lifetime risk of developing bowel cancer to up to 80%. Yet a staggering 95% of those affected don’t know they have it and can pass it onto their children because they simply aren’t being tested.
Our research has found that more than 80% of hospitals in England are failing to test all bowel cancer patients at the point of diagnosis, in line with clinical guidance, because they aren’t being given the funding to pay for these tests by their local clinical commissioning group (CCG). This needs to change.
It’s vital people know they have Lynch syndrome so they, and their family members, can take life-saving steps to reduce their chance of dying from bowel cancer. A simple test can make all the difference to families like Annika’s.
"Lynch syndrome has devastated my family. My grandmother died of bowel cancer, as well as my father and my aunt passed away of other cancers.
I was diagnosed with bowel cancer when I was just 49. Although I have a strong family history of cancer I wasn’t tested for Lynch syndrome until a year after treatment. Since then three of my siblings have tested positive with the genetic condition.
The saddest thought for me now is that there’s a 50:50 chance of my daughter having Lynch syndrome too"
CCGs and local health bodies urgently need to work together to ensure testing is carried out. We need your help to ask your MP to raise concerns in your local area.