As Lynch Syndrome Awareness Day approaches on the 22 March, we reflect on the great progress made in Lynch syndrome pathways across the Northeast and Yorkshire (NEY) region.

What is Lynch?

Lynch Syndrome is a rare condition that can run in families and lead to a higher risk of developing certain cancers such as bowel, womb (endometrium), stomach and pancreatic. Although rare, its estimated that 200,000-300,000 people in the UK have Lynch Syndrome, though only 5% have been tested and diagnosed. Improved testing could make a huge difference to patients with Lynch Syndrome, influencing treatment decisions and reducing cancer risks.

Lynch Syndrome UK Annual Conference Tickets (9:00, Sat 23 March 2024) available here


Mainstreaming and Maintaining Momentum

Last year saw the Lynch Syndrome Clinical Nurse Specialist (CNS) team travelling around Trusts within the NEY region, educating colorectal and gynaecology multi-disciplinary teams (MDTs) with the goal of developing their skills to improve pathways and services for patients who may have Lynch syndrome.

Thanks to their efforts, many teams across the region have started ‘mainstreaming’ (providing direct access to genetic testing) since the start of the National Transformation Project in 2021. This means earlier diagnosis, access to appropriate risk reducing measures and surveillance for their patients.  And the work hasn’t stopped there, with the Trusts, Cancer Alliances and Clinical Genetics Services across the region working to support even more teams in providing this service.

Join our Lynch Syndrome Community of Practice

Forging and supporting relationships between colleagues working in these services has been pivotal to the excellent progress made to date, and region-wide collaboration is vital in striving for sustainable equity of access to high quality services.

To support this a new network, introduced late last year, is now gathering momentum with nurses from across all four Cancer Alliances set to attend the NEY Lynch Syndrome CNS Community of Practice.

Currently hosted by the West Yorkshire and Harrogate Cancer Alliance (WYHCA), the priority of the network is to provide valuable peer support in what is still a relatively new area of practice for many nurses. The Community of Practice will be a space to share experiences, ask questions and solve problems collaboratively.

If you’d like to join the Lynch Syndrome CNS Community of Practice, please contact Karen Westaway (Lynch Syndrome Project Manager/CNS, WYHCA) for more information – [email protected]