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Wales 'failing to test' for high-risk bowel cancer gene

9 April 2018
Appeared in BioNews 944

UK hospitals are failing to screen bowel cancer patients for a genetic condition that significantly raises cancer risk, a new report has found.

Current guidelines recommend that all bowel cancer patients should be tested for Lynch syndrome at diagnosis. But the report, by the charity Bowel Cancer UK, found patchy compliance, with none of the local Health Boards in Wales complying.

Bowel cancer is second biggest cause of cancer mortality in the UK. Lynch syndrome can increase the risk of developing bowel cancer by up to 80 percent, while also increasing the chances of developing other cancers, such as ovarian or stomach cancer. About 95 percent of the estimated 175,000 people with Lynch syndrome in the UK remain undiagnosed, according to the charity.

In February 2017, the NICE (National Institute for Health and Care Excellence) issued guidelines recommending that every patient newly diagnosed with bowel cancer should be screened for Lynch syndrome. Scotland's Scottish Molecular Pathology Consortium also recommended screening all patients with bowel cancer under the age of 60.

Bowel Cancer UK requested data on the uptake of the guidelines in January 2018 under the Freedom of Information Act from hospitals, Clinical Commissioning Groups and budget holders for NHS hospitals in England. In Wales and Scotland the information was requested from local Health Boards, and in Northern Ireland from Health and Social Care Trusts.

None of the countries screened all newly diagnosed bowel cancer patients for Lynch syndrome, the charity found. In Wales, none of the seven local Health Boards tested all newly diagnosed patients and only three of them stated the intent to implement the practice. Financial issues, staffing and policies were cited as barriers.

In England, 17 percent of hospitals followed best practice. In Northern Ireland only one of the trusts followed best practice, with the remaining four screening only newly diagnosed bowel cancer patients under the age of 50. Half of Scottish institutions complied with the Scottish guidelines and a further 43 percent were testing all bowel cancer patients for Lynch syndrome – over and above guidance.

A test for Lynch syndrome costs the NHS around £200, while the treatment for bowel cancer costs about £25,000. People with this syndrome may respond differently to standard therapies. In addition, children and siblings of patients have a 50 percent chance of inheriting the mutation and regular screening and lifestyle changes might prevent occurrence of cancers in this group, the charity said.

'A lack of funding and resources from budget holders means that hospitals' hands are tied,' said Deborah Alsina, chief executive of Bowel Cancer UK. 'Until these issues are being addressed generations of families will continue to be devastated by cancer and lives will be needlessly lost.'

Hospitals denying patients £200 genetic bowel cancer test due to lack of money
iNews |  27 March 2018
Patients 'not tested' for bowel cancer gene in Wales
BBC News |  27 March 2018
People at high risk of cancer denied a £200 life saving genetic test
Bowel Cancer UK |  27 April 2018
Thousands of bowel cancer patients at risk as hospitals ignore genetic test
The Telegraph |  27 March 2018
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