Hospitals failing to test for genetic disorder linked to bowel cancer

31% of Hospitals in England, and 71% in Wales, are failing to test for a genetic disease in bowel cancer patients, in breach of guidelines. Since 2014, bowel cancer patients should be tested for Lynch syndrome, a genetic disorder that places those with it at significantly increased risk of developing bowel cancer.

Testing identifies family members that may have the disorder and ensure that those at risk can be appropriately screened and monitored to diagnose bowel cancer at an earlier stage that might otherwise be possible. In an age when early diagnosis is often coined as the backbone of cancer survival, it’s unsurprising that the Royal College of Pathologists made mandatory testing for Lynch syndrome part of its treatment guidance.

But a Freedom of Information request by Bowel Cancer UK has shown that many hospitals are not testing for Lynch syndrome, and of those that do test younger patients, only 56% do so automatically after diagnosis, with others waiting to be told by Consultants that it is necessary. This means that victims of bowel cancer could go undiagnosed and untreated for longer than necessary.

The issue was thrust into the public eye in 2014 when teenager Stephen Sutton MBE died from bowel cancer. Stephen made headlines when he raised millions of pounds for the Teenage Cancer Trust after he received a terminal diagnosis. Stephen’s dad had previously been treated for bowel cancer on two occasions and was diagnosed with Lynch syndrome. He warned doctors about this when Stephen started to be unwell and his pleas for Stephen to be tested for bowel cancer were initially ignored. When the investigations were eventually carried out 6 months later, the cancer was too advanced to cure.

A spokesperson for Bowel Cancer UK has said

The guidelines have now been in place two years and there are still 40 hospitals in England alone not doing the test at all, plus a huge variation in approach to testing across the UK”.

The charity urges anyone with a family of history of either Lynch syndrome or bowel cancer to ask their GP about resting for the disorder.

If you, or anyone you know, is concerned about a delay or failure to diagnose cancer, speak to one of our specialist clinical negligence lawyers on 0800 316 8892, or contact us online here.