The Lynch Syndrome Transformation Project ran from 2019-2024. It arose to support NHS England in its aim for all surgical and oncology teams in colorectal and gynaecology to offer genetic testing for Lynch syndrome as part of routine patient pathways. This was in line with both National Genomic Test Directory eligibility criteria and NICE Guidance: DG27 – colorectal, DG42 Gynaecology.
The Central and South GMSA joined the Lynch transformation project in 2023, employing two co-lead Lynch nurses to cover the West Midlands and Thames Valley and a project manager to support the running and implementation of the project. The transformation project aimed to meet the NHS Long Term Plan ambition to diagnose cancer at an early stage, through the following:
- Increase the identification and diagnosis of Lynch syndrome
- Improve cancer prevention through identification of individuals at risk
- Implementing stratified medicine
As a team, we helped to establish a Lynch MDT Champion within each colorectal and gynae cancer MDT, as well as working to upskill the workforce to identify eligible patients for testing and delivering mainstreamed constitutional gene testing.
We also worked to develop Regional Expert Networks to embed standardised and equitable testing pathways for Lynch syndrome across England and monitored and addressed any geographical variation in testing.
Teams across the region have been supported in undertaking bespoke training, resulting in increased awareness of the importance in identifying and managing patients through a diagnosis of Lynch syndrome. Training and awareness sessions have been run for ICB’s to promote awareness of Lynch and stress the importance of the continued funding and sustainability to enable clinical teams to continue their work indefinitely.
In the latter half of 2024/2025, the CAS Lynch team have moved towards implementing primary care training, with the aim of supporting GP’s in the management of Lynch patients within their clinical caseloads and achieving a high standard of lifelong care.
For more information, please contact: