It’s time to test for Lynch syndrome in Wales

Earlier this year, we published a report based on the findings of a Freedom of Information request asking hospitals in the UK if they test all bowel cancer patients for Lynch syndrome at diagnosis, in line with NICE guidance. Of the UK nations, we found that Wales is the only country where none of the seven health boards are following the latest guidance. While there was initial engagement from the Welsh Government to implement testing via the Pathology Network, progress has stalled again so we need your help to let them know its #TimetoTest.

Ask your AM to write to the Health Secretary to let them know it’s #TimetoTest

Lynch syndrome is a genetic condition that can increase the lifetime risk of bowel cancer to up to 80%, so it’s vital people know when they have it so they, and their family members, can take life-saving steps to reduce their chance of dying from bowel cancer. NICE guidance DG27 recommends all bowel cancer patients are tested for Lynch syndrome at diagnosis. Yet our Freedom of Information (FOI) results have consistently shown year after year health boards in Wales have struggled to implement testing in line with guidance. This must change.

Time to Test campaign: what we’ve done so far

In March 2018 we launched our Time to Test campaign in Wales and asked our campaigners to get in touch with their AM to ask that they call on the Health Secretary to press NHS Wales to ensure no bowel cancer patient misses out on testing. This has helped us put this issue on the Health Secretary’s agenda! In May, we helped secure a bowel cancer debate at the Wales National Assembly plenary session, where our Time to Test report was highlighted and calls to introduce the Lynch syndrome test were made.

We also wrote to the Chief Medical Officer in Wales, sharing our findings that none of the health boards in Wales are testing for Lynch syndrome in line with NICE guidance, and to receive an update on what’s being done to introduce testing. The update we received was that the Welsh Government was seeking advice from the Wales Cancer Network’s bowel cancer experts to determine the best way to implement the guideline. Discussions on delivery within health boards via the Pathology Network were then to follow.

What progress has been made since?

In principle, Wales have agreed to adopt universal testing for Lynch syndrome and have committed to assess the implications of NICE guidance, with a view to implementing a national system of testing, similar to what’s happening in Scotland. However, how and when this will be implemented still remains unclear and, shockingly, there’s been very little progress. Wales is now lagging even further behind other parts of the UK and bowel cancer patients and their families are being disadvantaged by a lack of decision making and progress on this important area. What we need is a new service approach, leadership and the necessary funds allocated to ensure this life-saving test can be implemented,

How you can help us?

We need your help again to make sure progress continues so that we can stop Lynch syndrome devastating entire families with bowel cancer. Your actions really do make a difference!

Take action today by asking your AM to write to the Health Secretary to urgently ensure all bowel cancer patients are tested for Lynch syndrome at diagnosis.

• Find out more about why we’re campaigning to improve the diagnosis and care of people with Lynch syndrome.
• Read our previous blog on why we’re shining a spotlight on particular challenges and opportunities facing bowel cancer in Wales.
• Concerned about Lynch syndrome? Here’s everything you need to know about the genetic condition