WE DID IT! Wales is the first UK country to test all bowel cancer patients for Lynch syndrome

Today NHS Wales, the Wales Cancer Network and the All Wales Medical Genetic Service announce that from June 2019, local health boards will follow the National Institute for Health and Care Excellence (NICE) guidelines to test all bowel cancer patients in Wales at the time of their diagnosis for Lynch syndrome – the first country in the UK to commit to do this.

This announcement during Bowel Cancer Awareness Month comes after years of campaigning from the charity, in partnership with expert clinicians and scientists who have worked tirelessly to drive this positive change.

In Wales, bowel cancer is the second biggest cancer killer and fourth most common cancer with 2,200 people diagnosed each year. Similar to the BRCA gene for people with a high risk of breast cancer, Lynch syndrome is a genetic condition that increases your lifetime risk of bowel cancer to up to 80%, as well as many other cancers including ovarian, stomach, and womb cancer. An estimated 175,000 people have Lynch syndrome in the UK – roughly the combined population of Wrexham and Merthyr Tydfil. Most people (95%) with this genetic condition do not know they have it because of a lack of systematic testing.

As well as an increased risk of bowel cancer, people with Lynch syndrome are also more likely to develop bowel cancer at a much younger age – the average age of diagnosis is 45 years old – and they’re also at a higher risk of a recurrence. There is also a 50 per cent chance that you will pass it on to your children. Identifying Lynch syndrome in those already diagnosed with bowel cancer, means family members who may also have the condition can be tested and those with the condition can benefit from regular colonoscopy.

Last year the charity’s Freedom of Information results revealed that no local health board in Wales were testing all bowel cancer patients and their family members for Lynch syndrome as per the latest NICE guidance, citing financial reasons, staff resources and policies as the main barriers. However following on from our campaign, local health boards have allocated significant funding to ensure that this life saving test will be available to all patients diagnosed with bowel cancer.

Lowri Griffiths, Head of Wales for Bowel Cancer UK, says: “Today’s firm commitment by NHS Wales is a critical step forward in saving more lives from bowel cancer. We have been calling for improvements to identify this group of high risk patients for many years. This will put pressure on England, Scotland and Northern Ireland to follow our lead.

“Testing for Lynch syndrome has a vital role to play in detecting bowel cancer early, when it is more treatable and chances of survival are high. This hereditary genetic condition can have a devastating impact on families. We hear every day how generations have been affected by cancer because they have Lynch syndrome. By identifying families at risk we will be better able to saved lives in the future.

Professor Tom Crosby, Medical Director for the Wales Cancer Network, says: “I’m delighted that, with the support of all health boards, Wales is able to lead the way by committing to this genetic screening test.

“The test will be available to all bowel cancer patients across Wales. If, following testing, the patient is identified with this condition, they and their immediate family can be offered regular surveillance. This includes a colonoscopy, which can prevent some cancers, enable early diagnosis, and take steps to decrease the risk of them getting cancer.  All of this can help save lives.

“I’m especially grateful to colleagues from the many organisations in Wales who have worked together to establish this service, and particularly to Dr Rachel Butler MBE who was, until recently, Head of the All Wales Genetics Laboratory, and Dr Rachel Hargest and the all-Wales Colorectal Cancer Specialist Group .”

Helen Roberts, Head of Solid Tumour Services in the All Wales Medical Genetic Service, says: “The laboratory has been very committed to driving forward this new service for colorectal cancer patients in Wales. The service will identify patients whose colorectal cancer is a result of having inherited a predisposition to cancer, in other words identifying patients with Lynch syndrome. Individuals and families with this hereditary condition will then be able to benefit from early surveillance and intervention, having a huge impact on many lives.”

•      Get involved in this year’s Bowel Cancer Awareness Month
•       Find out more about our Lynch syndrome campaign across the UK
•       Read our blog on our campaign in Wales for health