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People with Lynch syndrome to be invited for regular colonoscopies

Tuesday 20 February 2024

Thousands of people with Lynch syndrome, a genetic condition that increases the risk of bowel cancer, will be offered regular high quality surveillance colonoscopies on the NHS. This is after years of campaigning from the charity in partnership with patients and the clinical community.

Around 175,000-200,000 people are estimated to have Lynch syndrome in the UK, but less than 5% have been identified. This means around 95% of people with the genetic condition don’t know they have a high risk of bowel cancer, the UK’s second biggest cancer killer, as well as a range of other cancers, including ovarian, stomach and womb.   

According to the NHS, about 1,100 bowel cancer cases in England each year are caused by Lynch syndrome.

People with the condition will now be invited for a colonoscopy every two years in a bid to detect the disease in earlier stages. Having regular surveillance colonoscopies can reduce the risk of dying of bowel cancer by as much as 72%. 

Genevieve Edwards, Chief Executive at Bowel Cancer UK, says: “With the Bowel Cancer Screening Programme managing Lynch syndrome surveillance we expect to see a vast improvement in the experience and outcomes for people with the condition.  

“Those who have been diagnosed with Lynch syndrome will now have regular access to high-quality colonoscopy tests regardless of where they live in England.  

 “As the first country in the world to implement a programme like this we are leading the way in improving the care of people with Lynch syndrome and ultimately saving lives.” 

Those diagnosed with bowel and endometrial cancer are offered genomic testing, which studies DNA, helping them to receive more personalised treatment.

 

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