(1 June 2023) In the North East and Yorkshire, we’re making good progress with our project to make sure that we are testing all the patients we should for potential Lynch syndrome (LS).

An estimated 200,000-300,000 people in the UK have LS, but only 5 per cent have been tested and diagnosed.  Our Lynch syndrome project aims to improve the early detection of cancer, and access to personalised cancer care for people with Lynch syndrome.

Identifying patients who have LS means that they can be diagnosed and monitored from a younger age, and the development of tumours can be identified sooner.  This will allow earlier treatment and, in some instances, preventative measures to be taken, providing better outcomes for patients

Working with teams across the region, we have:

  • Demonstrated an increase in testing uptake of best practice care pathways for Lynch syndrome testing (vs. baseline data established through an initial audit) by applying learnings from major centres
  • Engaged and educated all 28 multi-disciplinary teams (MDTs) in womb (endometrial) and bowel cancer across: Humber & North Yorkshire, South Yorkshire & Bassetlaw and West Yorkshire & Harrogate.  This has included the delivery of five Lynch Syndrome Regional Engagement and Education Forum (REEF) webinars.  24 MDTs have completed their audits and, of these, six have committed to implementing th best practice care pathways for Lynch syndrome testing, as part of the mainstream care offered to patients with bowel and womb cancer so far.

The project is initially focusing on bowel and womb cancer patients. Identifying people with LS will also provide the opportunity to enrol them into National cancer screening programmes before they develop other cancers and prevent them through risk reduction and interventions such as colonoscopy surveillance, early surgery and drugs such as aspirin.

LS is a rare condition that can run in families and lead to a higher risk of developing certain cancers such as bowel, womb, stomach and pancreatic.

The next steps are to engage with MDTs in the North East and North Cumbria area and support the establishment of a pan-regional expert forum, for colleagues across the region to discuss cases and share learning from each other for best practice.