Test bowel cancer patients for Lynch syndrome

More than eight out of 10 NHS hospitals in England are not following the National Institute for Health and Care Excellence (NICE) guidelines to test all bowel cancer patients at the time of their diagnosis for Lynch syndrome, with a mere 22 hospitals (17%) following the guidelines. A freedom of Information request submitted by Bowel Cancer UK found that 83 per cent of hospitals were failing to abide by the recommendations.

Bowel cancer is England’s second biggest cancer killer and fourth most common cancer with 34,000 people diagnosed each year in the country. Similar to the BRCA gene for people with a high risk of breast cancer, Lynch syndrome is a genetic condition that increases your lifetime risk of bowel cancer to up to 80%, as well as many other cancers including ovarian cancer, stomach cancer and womb cancer.

This increased risk means people with Lynch syndrome are also more likely to develop bowel cancer at a much younger age – the average age of diagnosis is 45 years old – and they’re also at a higher risk of a recurrence.

An estimated 175,000 people have Lynch syndrome in the UK – roughly the population of Oxford. Most people (95%) with this genetic condition do not know they have it because of a lack of systematic testing. The condition also runs in families, therefore if you have the genetic condition there is a 50 per cent chance that your children, brothers and sisters also have it. By identifying Lynch syndrome in bowel cancer patients, family members who may have the condition and be at risk of bowel cancer can also be tested.

The charity’s FOI results found that those hospitals who aren’t testing for Lynch syndrome, 91% citied ‘financial’ reasons as the main barrier, followed by nearly two-thirds (61%) listing ‘staff resources’ as a common obstacle. Other reasons included a lack of awareness of the NICE guidelines (17%), policies (14%) patient consent (3%).

One hospital trust said: “The main barriers have been, and remain, financial and staff resources. NICE produce guidance but the government do 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.”

Testing for Lynch syndrome is value for money for a cash-strapped NHS. This simple test costs the NHS around £200 per patient, whereas treatment for bowel cancer is around £25,000.

As this genetic condition can affect treatment options for bowel cancer, identifying Lynch syndrome in bowel cancer patients will ensure they are offered the right surgical and drug treatments and not offered treatment they won’t respond to or may have adverse reactions to.

Testing bowel cancer patients for Lynch syndrome also means that their family members can be offered testing to identify those at higher risk of developing bowel cancer and other cancers. Once they are identified they can take steps to reduce their risk of bowel cancer, or be diagnosed at an earlier stage when it is easier to treat.

Clinical Commission Groups (CCGs), who are the budget holders for NHS hospitals in England, should be providing the upfront cost to enable hospitals to test bowel cancer patients and their family members for Lynch syndrome. However the charity’s FOI results show that almost two thirds of CCGs (65%) are not providing the vital funding and resources, with more than a quarter (29%) denying it is their responsibility.

To address this issue, Bowel Cancer UK and Beating Bowel Cancer is calling on CCGs and local health bodies to work together to ensure testing for Lynch syndrome can be carried out, until a national policy is developed and funded by NHS England and the Department of Health & Social Care.

Deborah Alsina MBE, Chief Executive of Bowel Cancer UK and Beating Bowel Cancer, says: “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 such as the NHS and CCGs because they are reluctant to take responsibility. At the moment, hospitals are being pushed from pillar to post, with no organisation being held accountable.

“The price of testing for Lynch syndrome is peanuts, only £200 per patient. 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.”