National recognition for our work to transform the way people are diagnosed with Lynch syndrome

Over the past few years we have been working in collaboration with colleagues across the South East to ensure that more people than ever before are able to get diagnosed with Lynch syndrome.

Before this, 95% of people who have Lynch syndrome (a common genetic condition that can increase your chance of developing cancer by up to 80% in your lifetime) didn’t know they had it and so weren’t getting the regular screening that they needed.

Now 94% of people are being diagnosed, and the time is takes for them to get that diagnosis has reduced by 75% since August 2022.

This hugely successful project has only been possible thanks to extraordinary collaboration between multiple NHS Hospitals, Clinical Genetics and all four Cancer Alliances that serve the South East of England.

That collaboration has now been shortlisted as a finalist at the prestigious 2025 HSJ Awards as the Collaboration of the Year.

By working together, pooling resources and funding we have been able to:

• Diagnose people earlier and quicker which has ultimately saved lives
• Ensured equitable access to testing via newly established mainstreamed pathways across the South East.

We’re delighted that our work has been recognised by the judges for the HSJ awards and we’re looking forward to the finals in November.

We’re also very proud to have involved patients and charities at every stage of this project. From the outset we have worked closely with Lynch Syndrome UK and been extremely fortunate to have Emma Jenkins as our excellent patient advocate. As an equal member of our team, Emma has been involved in every decision and was a key author in our report which detailed the experience of over 120 people who had been screened for Lynch syndrome. Emma’s lived experience combined with feedback from patients across the country, has been invaluable in helping us to improve the pathway which will now benefit so many more people.

Our work to proactively involve patients has been recognised by the judges as a finalist for this year’s Picker Experience Network Awards.

Naturally we want to thank everyone who has been involved in our work to transform the way people are diagnosed with Lynch syndrome, ensuring they can then get the screening that they need. We particularly want to thank everyone who shared their personal experience of being screened for Lynch syndrome and all the many organisations and individuals who have made the transformation possible and sustainable.