Introduction to project

Lynch syndrome is an inherited condition that causes people to have a higher lifetime risk of bowel and endometrial cancers.

The aim of the project is to test every patient who develops bowel or endometrial cancer for Lynch syndrome; and then to embed new pathways for onward testing, surveillance and referrals for positive patients and their families. The project aims to improve early detection of cancers as well as personalised medical care. 

What is the condition?  

Lynch syndrome (LS) is a rare condition that can run in families.

People affected by LS have a higher risk of developing some types of cancer, including cancer of the:

• bowel
• womb (endometrial cancer)
• ovary
• stomach
• pancreas
• small bowel
• ureter and renal pelvis.

What are we doing? 

Led by the North Thames and South East Genomic Medicine Service Alliance, the Lynch Syndrome project is working to improve the identification and management of Lynch Syndrome, bridging the gap in testing and diagnosis of Lynch Syndrome and supporting the early detection of cancer and access to personalised care. The project will initially focus on colorectal and endometrial cancer patients and over time the programme will aim to extend LS screening across relevant tumour types.

The Central and South GMSA are collaborating closely with  Cancer Alliances, National Disease Registry Service (NDRS), National Cancer Registration and the NHS England Cancer Programme to:

• Establish a Lynch MDT Champion within each Colorectal and Gynae Cancer MDT
• Upskill the workforce to identify eligible patients for testing and deliver mainstreamed constitutional gene testing
• Develop Regional Expert Networks to embed standardised and equitable testing pathways for LS across England and to contribute to the monitoring and addressing of any geographical variation in testing

 Progress to date:

Regionally, over 40 MDT Lynch Champions have been appointed to be responsible for Lynch testing pathways across our geography. These Champions are supported by a network of Lynch Nurses, Clinical Project Leads and the GMSA Project Management Office (PMO) and are central members of the Regional Expert Networks that are being established. 

What training is available?

National Online training for healthcare professionals:  https://rmpartners.nhs.uk/lynch-syndrome-early-diagnosis-pathway-colorectal-cancer/

Online Training for Endometrial Cancer MDT’s: https://rmpartners.nhs.uk/lynch-syndrome-early-diagnosis-pathway-endometrial/

Online training for Pathologists: https://rmpartners.nhs.uk/lynch-syndrome-online-training-for-pathologists/

Online Training for Primary Care Clinicians: https://rmpartners.nhs.uk/lynch-syndrome-online-training-for-primary-care-clinicians/

Where can I find out more?

North Thames GMSA (lead GMSA for Lynch project):  https://www.norththamesglh.nhs.uk/national-gmsa-transformation-project-lynch-syndrome/#Project-Overview

Lynch Syndrome UK website: https://www.lynch-syndrome-uk.org/

Macmillan Patient information on Lynch Syndrome: https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/lynch-syndrome-ls

Genomics Education Programme  Lynch Syndrome Pathway: https://www.genomicseducation.hee.nhs.uk/the-clinical-pathway-initiative/clinical-pathway-initiative-established-pathways/ 

Macmillan Cancer Care Genomics Toolkit: Colorectal Cancer: https://www.macmillan.org.uk/healthcare-professionals/innovation-in-cancer-care/genomics-toolkit/colorectal 

Who can I contact?

Programme Manager – Lisa Dew

Project Manager – Sarah Hewett

Clinical Medical Lead – David Church 

Deputy Medical Lead – Alaa El-Ghobashy