Lynch Syndrome Expert Network, North Thames Region

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Lynch syndrome (LS) affects approximately 1 in 400 adults and significantly increases the risk of developing colorectal, endometrial, ovarian, and other cancers. Evidence consistently supports the cost-effectiveness and clinical benefit of structured diagnostic pathways for patients with LS, combined with family cascade testing to identify those at risk.

Despite being common, only 5% of individuals with LS in the UK are currently diagnosed. The Genomic Medicine Service Alliance (GMSA) Lynch Syndrome project aims to address this gap by empowering cancer teams to provide genetic testing directly within their own services (“mainstreaming”), simplifying diagnostic pathways.

Routine clinical care for individuals with LS is often managed through primary and secondary care, guided by clinical genetics services. However, many patients have complex needs requiring a coordinated, multi-specialty approach that is best delivered by regional centres of expertise. Currently, access to such care is inconsistent across England.

The NHS GMS National Lynch Syndrome project, led by the North Thames and South-East GMSA, is working to improve LS diagnosis and management. This initiative seeks to align testing and care with NICE guidelines (DG27 and DG42), ensuring all patients with bowel or endometrial cancer are tested for LS and that new pathways for ongoing care and family referrals are embedded.

Regional Expert Network Activities

The North Thames Regional Expert Network supports patients, clinicians, and services in diagnosing and managing Lynch syndrome. Its core activities include:

1. Multi-disciplinary and Multi-specialty Expertise
   Representation from clinical genetics, gastroenterology, gynaecology, pathology, nursing, and other specialties.
2. Support for Mainstreaming Services
   • Ensuring equitable access to genetic testing.
   • Providing guidance on genetic results and complex cases.
   • Connecting mainstream diagnoses to regional and national services.
3. Communication Platform
   A virtual platform to facilitate communication between clinicians and the expert network.
4. Accessible MDT Meetings
   Regular multidisciplinary team meetings for discussing genetic test interpretation, clinical management, and complex cases.
5. Pathway Coordination
   A dedicated Network Pathway Coordinator funded by NHSE to ensure consistent management of LS diagnoses across services.
6. Audits and Research
   Participation in quality improvement initiatives and research studies.
7. Governance
   Regular reviews with the network Board to ensure accountability and consistency.

Supporting Local Services

The network also provides essential support to:

• Cancer MDTs through Lynch champions.
• Mainstreaming pathways.
• Family history services.
• Primary care teams.

Overview of Services and resources

For updates and information about services, education, and research opportunities, refer to the latest network newsletter. The following resources are available:

• MDT forums for case discussions.
• Contact details for regional genetic services and labs.
• A directory of clinical services for lifelong care.
• Specialist services for additional support.
• Educational resources and courses.
• Opportunities for research and clinical trials.

Newsletters

For the latest expert network updates and information on services, education, and research opportunities, we recommend that you read the latest newsletter.