We're urging NHS Scotland to test all bowel cancer patients for serious genetic condition

We are urging NHS Scotland to commit to testing all newly diagnosed bowel cancer patients for Lynch syndrome – a serious inherited condition that increases the risk of developing bowel cancer by up to 80%, as well as many other cancers – ahead of a decision being made by the organisation this month.

There are an estimated 175,000 people in the UK with Lynch syndrome but hardly any of them know they have it because people aren’t being tested.  If you have Lynch syndrome there is a 50% chance that your children, brothers and sisters also have the condition meaning whole families can be devastated by cancer.

Currently in Scotland testing for Lynch syndrome only takes place in newly diagnosed patients under the age of 60. We're calling on Scotland to test all newly diagnosed bowel cancer patients for Lynch syndrome – not just those under 60 – following The National Institute for Health and Care Excellence (NICE) recommendation in England in February 2017.

Emma Anderson, Head of Bowel Cancer UK in Scotland, says: “Testing everyone for Lynch syndrome in Scotland ensures that no one slips through the net, including family members who may also have the condition and be at risk of bowel cancer themselves. 

“This is vital so appropriate steps can be taken to reduce their risk of developing cancer such as preventative surgery or regular colonoscopy, which is proven to reduce the risk of dying from bowel cancer by 72%.”

The charity’s ‘Improving services for Lynch syndrome: who’s responsible?’ report found patients with Lynch syndrome face 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 charity urges Shona Robison MSP, Cabinet Secretary for Health and Sport, to provide hospitals with additional resources to ensure everyone newly diagnosed with bowel cancer can be tested for Lynch syndrome and to deliver a timely and high quality service to monitor and reduce their risk of bowel cancer.

John Scott MSP for Ayr says: “Since being diagnosed with Lynch syndrome some years ago, I have had a colonoscopy every two years to look for any signs of bowel cancer. This procedure has been carried out at Western General Hospital in Edinburgh and I can’t praise and thank the staff highly enough for my treatment there. I strongly support the proposal that all bowel cancer patients in Scotland should be tested for Lynch syndrome, which quite simply can prove to be life-saving.”

Professor Malcolm Dunlop, University of Edinburgh, leading expert in bowel cancer genetics, says: “Identifying all prevalent Lynch syndrome patients at the time of diagnosis of bowel cancer from a biopsy would have considerable direct impact on patient care. Such knowledge would help doctors discuss treatment options and the type of surgical operation with the newly diagnosed cancer patient. The operation can then address both the current cancer but also future cancer prevention measures for that patient.

“Systematic testing would also identify family members who are at risk and thereby instigate prevention and surveillance to reduce cancer risk for relatives. Scotland has led the world in many aspects of identifying Lynch syndrome genes and implementing systematic testing. However we have somewhat fallen behind from that world-leading position. I would urge the Scottish Health Minister to instigate systematic testing for Lynch syndrome forthwith. “

• Sign our petition to put pressure on UK Health Ministers, including Shona Robison MSP, to take responsibility. The petition now has nearly 3,000 signatures but it still needs more.

• Become a campaign supporter and help us lead the change for people with Lynch syndrome.

• Share your story to highlight the experience of people affected by Lynch syndrome, raise awareness of the condition, and encourage and inspire other people affected.