“Three generations of my family were devastated by cancer because of Lynch syndrome – my grandma, my mum, auntie and two uncles. I was also diagnosed with bowel cancer.
Because of my family history I should have been tested for Lynch syndrome sooner and my bowel cancer might have been prevented.
The silver lining is that now I know about the condition, I have a better chance of making sure my children don’t have to go through what I went through.” Read Caroline’s story in full
What’s the problem?
Generations of families like Caroline’s are being devastated by cancer because of an inherited, genetic condition called Lynch syndrome that dramatically increases the risk of cancer.
There are an estimated 175,000 people in the UK that share Caroline’s condition – but hardly any of them know they have it because people aren’t being tested. It’s vital they’re identified, so they can be regularly monitored to reduce their chance of dying from bowel cancer.
But our new findings reveal a worrying picture of delayed diagnosis, poor monitoring and unacceptable waiting times. A lack of leadership, locally and nationally, means no one is taking responsibility to fix these problems.
The buck must stop with the UK’s health ministers – call on them to stop cancer devastating families like Caroline’s.
What needs to happen?
We’re calling on UK Health Ministers to urgently step in and take responsibility for improving the identification and management of Lynch syndrome by:
- Developing a national registry of people with Lynch syndrome to improve our understanding of the condition.
- Establishing a national surveillance programme to improve access to regular colonoscopy.
- Developing comprehensive guidelines that set out how people with Lynch syndrome should be managed.