Lynch Syndrome - North East and Yorkshire Genomic Medicine Service North East and Yorkshire Genomic Medicine Service

Earlier cancer diagnosis for patients with Lynch Syndrome to improve patient outcomes

Lynch Syndrome (LS) 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. Of those with LS (an estimated 200-300K people in the UK), only 5 per cent have been tested and diagnosed.

Identifying patients who have LS means that they can be monitored from a younger age, to allow earlier diagnosis and treatment and, in some instances, preventative measures to be taken to ensure better outcomes for patients.

Project Overview

This project, led nationally by South East GMS and North Thames GMS, aimed to improve the early detection of cancer and access to personalised cancer care for people with LS by embedding standardised, equitable testing pathways across England.

The project initially focused on patients with colorectal and endometrial cancer, with the aim of extending LS testing across other relevant tumour types.

It also focussed on ensuring LS patients were enrolled into national cancer screening and surveillance programmes to improve outcomes using risk reduction interventions including early surgery and drugs such as aspirin and providing tailored treatment using emerging therapies and access to research programmes.

Achievements

The NEY GMS worked in collaboration with the four Cancer Alliances in the region to secure LS champions within relevant MDTs and provide education to help identify patients with LS and link them with surveillance programmes and patient support groups where appropriate. Expert knowledge was shared with teams in local hospitals via three LS Nurse Educators and online.

We have also linked with the National Cancer Registry to ensure that all known families with LS in the North East and Yorkshire are registered and can access national screening programmes in the future.

Further Information and Support

Lynch Syndrome Community of Practice

We have established a NEY Community of Practice for Clinical Nurse Specialists working in Lynch testing pathways. If you’d like to join this informal peer support network to share problems, practice and progress, please email Karen Westaway, Clinical Nurse Specialist (WYH Cancer Alliance).