Beating bowel cancer together

Our research on variations in Lynch syndrome testing presented at leading conference

Bowel Cancer UK is presenting research today (Wednesday 24 June) at the Digestive Disorders Federation 2015 meeting at ExCel in London, which showed a wide variation in tests for Lynch syndrome in bowel cancer patients under 50.

The meeting, which takes place from 22 -25 June 2015, consists of five organisations including the British Society of Gastroenterology and The Association of Coloproctology of Great Britain and Ireland, and will involve leading clinical experts coming together at this event to replace their Annual Meetings.

Lynch syndrome is an inherited condition which can mean a higher risk of developing bowel cancer. Testing for Lynch syndrome will help identify family members who may have the condition and be at risk of bowel cancer. It can also affect treatment options. Lynch syndrome testing has been shown to be cost effective for the NHS, and is a required reflex test mandated by the Royal College of Pathologists and recommended by the British Society of Gastroenterologists.

Despite this testing is patchy.  Just half of the hospital trusts in England that responded to the FOI request said they conduct tests among bowel cancer patients under 50 for Lynch syndrome, 10 of the trusts saying they had no plans to do so.

Bowel Cancer UK's research highlighted that it's not just England hospital trusts that are falling short.  More than half of health boards in Wales did not screen patients under 50 with bowel cancer. In Scotland fifty per cent of health boards currently do not follow the guidelines for Lynch syndrome testing set in July last year by the Royal College of Pathologists.  It was a brighter picture in Northern Ireland where all health and social care trusts responded to say that they performed the test to identify possible Lynch syndrome patients.

The approach to testing also widely varied among those hospitals which do screening for bowel cancer patients under 50. Testing is part of the core dataset for pathologists and should therefore be carried out automatically (known as reflex testing) for this group of young patients. However many trusts/health boards did not yet carry out this "reflex testing," as stipulated in the Royal College of Pathologists' guidelines.  Scotland is in the process of developing a nationwide approach to testing. We believe a nationwide approach would provide the consistency needed to ensure all bowel cancer patients under 50 are systematically tested.

Bowel Cancer UK submitted the FOI request in November 2014 to every NHS trust in England, health board in Scotland and health and social care trust in Northern Ireland to establish the number of trusts/health boards which were implementing the testing for all bowel cancer patients under 50, as mandated by the Royal College of Pathologists.  Lynch syndrome is responsible for around one in 12 cases of bowel cancer in people aged under 50.

Asha Kaur, Policy Manager at Bowel Cancer UK and lead author of the report said, "We are really pleased to be presenting this important piece of research at this year's prestigious Digestive Disorders Federation conference. We know that few individuals and families with Lynch syndrome have been identified and yet these people are at considerably higher risk of developing bowel cancer and other cancers. While our research shows some encouraging results, we must do more to ensure no patient diagnosed with bowel cancer under the age of 50 misses out on being tested for Lynch syndrome. That's why we have called for the urgent introduction of a nationwide initiative to ensure a consistent, systematic approach to screening for Lynch syndrome as mandated by the Royal College of Pathologists; and for CCGs to commission to reflect the RCPath cancer dataset."

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