Hospitals failing to test patients for faulty gene linked to cancers

Lynch syndrome is a genetic condition caused by a defect in the cancer preventing mismatch repair gene – resulting in an estimated 1,000 cases of bowel cancer each year.

Findings from a Freedom of Information request sent to all hospitals by Bowel Cancer UK show 29 per cent of the 156 that responded across the country do not test patients under the age of 50 who have been diagnosed with bowel cancer.

Of the hospitals that do carry out the test, only 56 per cent do so automatically as stated in the clinical guidelines of the Royal College of Pathologists (RCPath). And only one in 10 are testing before bowel cancer treatment.

The tests help detect those at greater risk of recurrence, inform treatment options and identify those with family who may also be at risk of bowel cancer.

Almost 3,300 people in Yorkshire were diagnosed with bowel cancer in 2013, while more than 1,300 died from the disease.

Asha Kaur, policy manager at Bowel Cancer UK, said: “Since we carried out the last Freedom of Information request on this issue in 2015 there has been a 46 per cent increase in the number of hospitals testing those under 50 diagnosed with bowel cancer.

“However, 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.

“We understand a number of hospitals face challenges implementing the guidelines, however many have developed innovative solutions and local approaches to overcome these barriers.

“Testing should be performed at diagnosis and that’s just not happening.

“We urge hospitals across the UK to work together to carry out this lifesaving test.”

The charity said Lynch syndrome has a “devastating effect on families”. There is a 50 per cent chance that the children or siblings of someone with it will also have the condition.

But Bowel Cancer UK said it is “crucial” to identify cases, while provisional screening at diagnosis is “simple and cost effective”.

Andy Sutton, the father of 19-year-old Stephen Sutton, who died from bowel cancer and became a household name by raising millions for charity, is also calling for all hospitals to test.

He said: “I know from personal experience how vital it is that every single person under 50 who is diagnosed with bowel cancer is offered testing for Lynch syndrome. I was eventually offered it but only after I had been diagnosed with bowel cancer second time around.”

He said he was glad more hospitals are now testing for Lynch syndrome, but that he would “like to see every hospital doing it”.

Bowel cancer is the UK’s second biggest cancer killer and the fourth most common cancer. More than 2,400 people under 50 are diagnosed with bowel cancer in the UK every year.

Professor Tim Helliwell, vice president of RCPath, said he recognises that “there are barriers for some trusts in being able to routinely offer testing”.

He added: “We would encourage local multidisciplinary teams and commissioners to work together to see if they can improve take up of this vital test.”

Bowel Cancer UK and RCPath will submit their findings to the National Institute for Health and Care Excellence ahead of the publication of their guidance on testing for Lynch syndrome in October.