More than eight in 10 (83%) NHS hospitals in England are failing to test bowel cancer patients for Lynch syndrome – a genetic condition that increases your risk of bowel cancer by up to 80%, as well as other cancers.
The National Institute for Health and Care Excellence (NICE) guidelines recommend all patients are tested as diagnosis can inform treatment options for bowel cancer, as some treatment is ineffective for those with Lynch syndrome. Despite this, a mere 22 hospitals (17%) are following the guidelines.
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 and potentially detect cancer at an earlier stage. This testing also gives them the chance to make proactive lifestyle changes to reduce their risk of the disease.
The Freedom of Information (FOI) findings were requested by Bowel Cancer UK and Beating Bowel Cancer, and have been published ahead of Bowel Cancer Awareness Month in April.
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. The condition also runs in families, therefore if you have the genetic condition there is a 50% chance your children, brothers and sisters also have it.
The charity’s FOI results found that of 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%) and patient consent (3%).
The charity said 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.
The charity said 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. 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, said: “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.
“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.”
In response an NHS England spokesperson said in a statement: “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.”