Urgent improvements needed to diagnose and manage people with serious genetic condition

Today the National Institute for Health and Care Excellence (NICE) has published final guidance recommending that from today everyone in England newly diagnosed with bowel cancer should be tested for Lynch syndrome.

This is great news as previous Royal College of Pathologists guidelines recommended only testing people under 50, NICE have expanded this to include all ages.

Lynch syndrome is a serious inherited genetic condition that devastates generations of families with cancer. Similar to the BRCA gene for people with a high risk of breast cancer, it increases the risk of developing bowel cancer by as much as 80%, as well as many other cancers.  An estimated 175,000 people have Lynch syndrome in the UK but a staggering 95% of those do not know they have it; meaning opportunities to save lives are being missed. This NICE recommendation will go a long way in addressing this problem.

Deborah Alsina MBE, Chief Executive, Bowel Cancer UK: “We hear every day how generations of families have been affected by cancer because they have Lynch syndrome. This NICE guideline has the potential to help us identify families at risk.  However it is just the first step, the guidance must be fully implemented and people with Lynch syndrome need access to regular surveillance screening to ensure any new tumours are prevented or detected early.  If we finally address the shocking nationwide lottery of services then we truly could stop this serious genetic condition devastating whole families in the future.

“Now England has taken this vital step forwards, we urge Scotland and Wales and Northern Ireland to follow England’s announcement in the near future and introduce testing for Lynch syndrome to everyone diagnosed with bowel cancer.”

For more information visit: https://www.bowelcanceruk.org.uk/media-centre/news-and-blog/urgent-improvements-needed-to-diagnose-and-manage-people-with-serious-genetic-condition/