Hospitals across the UK are failing to test all bowel cancer patients at the time of their diagnosis for a genetic condition called Lynch syndrome, which significantly increases the risk of developing cancer over a lifetime.
In February last year the National Institute for Health and Care Excellence (NICE) recommended that everyone in England newly diagnosed with bowel cancer should be tested for the syndrome.
Around 175,000 people are thought to have Lynch syndrome in the UK, but most are unaware they have the condition because of a lack of systematic testing.
Bowel Cancer UK says it is “vital people with Lynch syndrome are identified so they can take steps to reduce their risk of dying from the UK’s second biggest cancer killer.”
Testing can recognise family members who may also carry the gene, which increases the risk of developing bowel cancer by as much as 80 percent, thus saving the NHS money by detecting the condition at an earlier stage when it is less costly to treat.
It can also help inform treatment options, ensuring that patients are offered the right surgical and drug therapies and not treatment they are unlikely to respond to.
However, research by the charity – based on Freedom of Information requests –found that just 17 percent of hospitals in England are following NICE’s guideline.
Most clinical commissioning groups (65 percent) said they do not provide the funding for Lynch syndrome testing in all newly diagnosed bowel cancer patients.
Of those hospitals not testing for Lynch syndrome, 91 percent said ‘financial’ reasons were the main barrier, while 61 percent cited ‘staff resources’.
The data also show that: Wales is the only nation not testing all bowel cancer patients for Lynch syndrome in any of their health boards; in Scotland 50 percent of health boards test bowel cancer patients under 60 for Lynch syndrome – as per the Scottish Molecular Pathology Consortium guidelines; and in Northern Ireland only one Health and Social Care Trust is testing all bowel cancer patients for the condition at diagnosis.
Bowel cancer charities are now calling on national health bodies and governments to ensure that the funding is in place for hospitals to carry out testing for all bowel cancer patients for Lynch syndrome at the time of diagnosis. The test costs the NHS around £200 per patient, but treatment for bowel cancer is around £25,000.
“Until there is clear local and national leadership and a firm commitment to improve the services for people at high risk of developing bowel cancer, the estimated 175,000 people who carry this inherited faulty gene will continue to fall through the gaps of health bodies because they are reluctant to take responsibility. At the moment, hospitals are being pushed from pillar to post, with no organisation being held accountable,” said Deborah Alsina, chief executive of Bowel Cancer UK and Beating Bowel Cancer.
“The price of testing for Lynch syndrome is peanuts, only £200 per patient. This far outweighs the cost of treating bowel cancer patients. A lack of funding and resources from budget holders 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.”