Let's end the #ScreeningGap for families with Lynch syndrome
What’s the problem?
There are 175,000 people in the UK with Lynch syndrome, a genetic condition that increases the lifetime risk of bowel cancer to up to 80%. Although there is no cure for Lynch syndrome, access to regular colonoscopy screening can dramatically reduce their chance of dying from the disease.
Despite the importance of the service to survival rates, the current localised approach has huge levels of regional variation with many people experiencing unacceptable waiting times and poor levels of care. It’s simply unacceptable that people’s quality of care comes down to potluck.
“Twelve people over five generations of my family, including me, have been devastated by bowel cancer because of Lynch syndrome. Despite the risk levels, my next colonoscopy appointment was scheduled for 5 years’ time due to a clerical error.
“The problem now is that my adult children are not being regularly screened. For the past six years they have had to chase their local hospital for a colonoscopy appointment. Having Lynch syndrome is stressful enough; we don’t need the extra hassle of chasing appointments.”
It doesn’t have to be this way. The Bowel Cancer Screening Programme already provides timely and high quality screening to healthy individuals aged 60-74 and could be extended to cover people with Lynch syndrome. This has already been done by the Breast Cancer Screening Programme, which manages the surveillance of people with genetic mutations, such as BRCA 1.
Ending the #ScreeningGap
That’s why we, along with leading clinical experts, are calling for the Bowel Cancer Screening Programme to extend its service to include people with Lynch syndrome. We don’t need to reinvent the wheel, the programme already runs to a very high standard with strict waiting times to test healthy people aged 60+ for early signs of bowel cancer. We can use the mechanisms already in place to make sure people with Lynch syndrome are seen on time with the same high quality care.
It’s incomprehensible that a robust and organised programme is made available for people at average risk but not for those at high risk of bowel cancer.
Ultimately, the buck must stop with the UK’s health ministers – call on them to stop cancer devastating families with Lynch syndrome.
Lynne and her youngest son