It’s Time to Test for Lynch syndrome

Today we launched our Lynch syndrome campaign calling for all bowel cancer patients to be tested for molecular features of Lynch syndrome, in line with NICE diagnostic guidance published in February 2017. Testing everyone for Lynch syndrome has clear benefits for patients, their families, and the NHS. This is both in terms of preventing and detecting cancer early, but also the cost-savings that this can deliver for a cash-strapped NHS. However, the findings of our recent FOI request found that only 17% of hospitals in England are testing all bowel cancer patients at the point of diagnosis.

As there is currently no national commissioning policy for this molecular diagnostic test it should be commissioned through local budgets, by CCGs. However, 65% of CCGs reported that they do not commission this guidance with many citing that this is because it is not their responsibility to. This has consequently affected the adoption of clinical guidance, with finances cited as the main barrier to testing by 91% of hospitals. We are calling on Healthwatches to contact local CCGs and Cancer Alliances to discuss how NICE guidance could be implemented.

To raise further awareness of this issue we want to share with you:
• Our Lynch syndrome report on the new FOI findings
• An infographic (attached) highlighting key statistics from our report
• And our interactive map where you can see if hospitals in your area are testing all bowel cancer patients in line with NICE diagnostic guidance.