Beating bowel cancer together

Wales commits to testing all bowel cancer patients for Lynch syndrome!

During Bowel Cancer Awareness Month, the Wales Cancer Network and the All Wales Medical Genetic Service announced that every health board in Wales will test all bowel cancer patients for Lynch syndrome, in line with clinical guidance.  Lynch syndrome is a genetic condition that increases the lifetime risk of developing bowel cancer to up to 80%, as well as many other cancers. This makes Wales the first country in the UK to commit to a national system of testing starting from June 2019.

Lynch syndrome is estimated to cause over 1,200 cases of bowel cancer every year in the UK, many of them under the age of 50. As an inherited condition, there is a 50:50 chance of passing the condition on through generations, which means whole families can be devastated by bowel cancer.

An estimated 200,000 people have Lynch syndrome in the UK but only 5% of individuals know they have it due to a lack of systematic testing. That’s why we’ve been campaigning for all bowel cancer patients to be tested for Lynch syndrome, at diagnosis, in line with clinical guidelines (National Institute for Health and Care Excellence DG27).

You can find out more about our work on Lynch syndrome here.

Campaign win!

After years of campaigning in partnership with expert clinicians and scientists who have worked tirelessly to drive positive change, we’re thrilled that Wales have committed to a national system of testing all bowel cancer patients for Lynch syndrome, in line with clinical guidelines – the first in the UK to commit to this.

This comes a year after we published our Time to Test 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. While there is a lack of systematic testing across the UK, Wales was the only country in the UK where no health boards were following the latest guidance to test all bowel cancer patients and their families for the genetic condition.

This led to the launch of our #TimeToTest campaign in Wales. We asked campaigners to call on their local Assembly Member (AM) to raise this issue with the Health Secretary to finally address the lack of testing. We also wrote to the Chief Medical Officer in Wales to share our report findings and call for change to happen.

Progress in the rest of the UK

We’re calling for England, Scotland and Northern Ireland to follow Wales and commit to a national system of testing for Lynch syndrome in line with NICE DG27.

Sign our petition to make this a reality across the UK

In Scotland, the Scottish Molecular Pathology Consortium (MPC), who are responsible for reviewing and implementing testing for Lynch syndrome, agreed it would be appropriate to adopt the recommendation by NICE. We hope they will commit to a national system of testing soon.

In England, one issue that has hindered progress is the lack of clarity around commissioning responsibility. This is because Lynch syndrome sits on both the rare and inherited disease directory, as well as the cancer directory under the new Genomic Medicine Service. These directories are funded differently, with tests for rare and inherited diseases being commissioned nationally, as opposed to cancer tests which will be commissioned at a local level. The Secretary of State, Matt Hancock, recently spoke of his ambition for the future of genomics in NHS England, but it’s vital we get the basics right first.

In Northern Ireland, the Department of Health stated in 2017 that they intend to include testing for Lynch syndrome as a potential service development for 2018/19, however this would be subject to funding. A business case was submitted in autumn 2018, but progress on this has stalled. 

We must let Health Ministers in Scotland, Northern Ireland and England know it’s #TimetoTest.

Help us stop bowel cancer devastating families with Lynch syndrome across the UK by signing our petition today

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