Advising with empathy and experience

Charity warns of cancer screening failure.

More than 80% of NHS hospitals in England are failing to test bowel cancer patients for the genetic condition Lynch syndrome, according to the charity Bowel Cancer UK.

Bowel Cancer UK estimates that 166,000 people in the UK are unaware that they have Lynch syndrome, which increases the risk of bowel and other cancers

Testing for the syndrome can guide the patients’ treatment and indicates whether their families are at risk as the children of people with Lynch syndrome have a 50/50 chance of developing it.

Bowel Cancer UK says it is important to find out whether patients have Lynch syndrome, because some chemotherapy drugs are ineffective for them.

Also, if other family members find they have the syndrome, it enables them to take steps to reduce their bowel cancer risk or be diagnosed at an earlier stage when it is easier to treat.

Teenage cancer fundraiser Stephen Sutton, who died of bowel cancer at 19, had Lynch syndrome. His father had twice battled bowel cancer.

When Stephen Sutton presented with similar symptoms he was told he was too young to get the disease, delaying his diagnosis for six months.

The National Institute for Health and Care Excellence (NICE) guidelines recommend testing all bowel cancer patients for Lynch syndrome at the time of their diagnosis but a Freedom of Information request by the charity found that 83% of NHS hospitals in England fail to do so.

Bowel Cancer UK says that 91% of those hospitals cited financial reasons as the main barrier and 61% said staff resources were a problem.

One hospital trust said: "The main barriers have been, and remain, financial and staff resources. NICE produces guidance but the government does not provide the funding for the implementation of the guidance. It is a recurring theme and, with the increasing use of genomic medicine, is a major problem for pathology departments."

But the charity says the cost of the test is small compared to treating patients for bowel cancer, which requires around £25,000.

Chief executive of Bowel Cancer UK and Beating Bowel Cancer, Deborah Alsina, said: "The price of testing for Lynch syndrome is only £200 per patient. Clinical Commissioning Groups (CCGs) need to loosen the purse strings as the price of testing for Lynch syndrome far outweighs the cost of treating bowel cancer patients.

"A lack of funding and resources from CCGs means that hospitals' hands are tied. Until these issues are being addressed, generations of families will continue to be devastated by cancer and lives will be needlessly lost."

An NHS England spokeswoman said: "There are clear NICE guidelines for when it's appropriate to test for Lynch syndrome that we expect NHS providers to follow but the quality of cancer care is always improving and the NHS is catching more cancers early with 7,000 more people surviving cancer compared to just three years ago."

Lynch syndrome (LS) is also known as hereditary non-polyposis colorectal cancer (HNPCC). LS, which is caused by an alteration in a gene, called a mismatch repair gene, doesn't cause any symptoms.

LS increases your lifetime risk of bowel cancer by up to 80%, and also of developing many other cancers including ovarian, stomach and womb.

If your family has a history of developing these cancers when they are under 50 years old, it is possible they have the altered gene that causes LS.      

Knowing about the risk and having regular screening may help prevent some cancers. It may also enable other cancers be found in the early stages, when they are more likely to be curable.

People with LS are screened every two years. Some people with LS even remove part of their bowels or wombs to pre-empt potential cancers.