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East Midlands Lynch Syndrome Expert Network (EMLSEN)

The East Midlands Lynch Syndrome Expert Network (EMLSEN) is made up of Clinical Geneticists, Genetic Counsellors, Colorectal Surgeons, Nurse Specialists, Gynaecologists, Oncologists, Histopathologists, a clinical psychologist as well as administration support.

East Midlands Lynch Syndrome Expert Network logo

Which area do we cover?

We provide expert, equitable care for those with Lynch Syndrome across the East Midlands.

Lynch Syndrome

Lynch Syndrome (LS) is a hereditary cancer syndrome with a population prevalence of 1 in 350. It is estimated that only 5% of people with LS in the UK have been identified. The most common LS index cancers are bowel and endometrial.

Identifying LS is important to:

  1. Reduce risk of future cancer – a diagnosis of LS enables risk reduction of LS- associated cancers by lifestyle changes, targeted bowel screening and risk-reducing interventions including surgery and medication.
  2. Enable access to tailored treatment – if someone with LS has cancer, they may be able to access novel personalised cancer therapies such as PDL1 or more extensive surgery.
  3. Identify at risk family members – when a patient is diagnosed with LS, their family members should be offered LS testing, enabling the identification of additional people with LS.

How will the EMLSEN help?

A specialist regional MDT will eliminate inconsistencies and inequities by identifying LS patients and providing them with continuity of care. The EMLSEN will provide a central location for comprehensive LS specialist care.

The EMLSEN will ensure:

  • Routine surveillance of LS patients across East Midlands
  • LS-informed surgery where appropriate, i.e. consideration of subtotal colectomy
  • Access to an LS specialist GP for patients concerned about symptoms
  • Access to a clinical psychologist who will help empower and support patients
  • Continuity of care for individuals with LS and their family members

How do I refer patients to the EMLSEN?

  • For areas served by the Nottingham Clinical Genetics Service (Nottinghamshire, Mansfield, Derbyshire and Lincolnshire) please email nuhnt.clinicalgenetics@nhs.net and include why you are referring them.
  • For all other areas of the East Midlands please email EMLSEN@uhl-tr.nhs.uk and include why you are referring them.

How does the MDT work?

There will be monthly EMLSEN MDTs to discuss all newly identified LS patients, as well as multi-disciplinary clinics (MDC) quarterly at UHL and NUH. The MDC will be accessible to LS patients who have specific queries or need follow up care.

The EMLSEN MDTs will be held on the fourth Monday of every month at 12pm via MS Teams.

Each trust has an allocated timeslot and clinicians are encouraged to attend to present their patient. It is recognised that clinicians are very busy and attendance at the rest of the meeting is not expected.

Core members of the EMLSEN

Nottingham University Hospitals NHS Trust
  • Karin Williamson – Consultant Gynaecologist
  • Cat Boereboom – Consultant CRC Surgeon
  • Marie-Anne O’Reilly – Lead Genetic Counsellor
  • Sarah Thomson – CNS
  • Debbie Williams – CNS
  • Kathryn Mellor – Genetic Counsellor
  • Anna Wilsdon – Consultant Clinical Geneticist
  • Anjana Anand – Consultant Oncologist
University Hospitals of Leicester
  • Vicki Kiesel –Lead Genetic Counsellor and East Midlands LS Lead
  • Baljit Singh – Consultant CRC Surgeon
  • Julian Barwell – Consultant Clinical Geneticist
  • Bethany Stafford Smith – Genetic Counsellor
  • Esther Moss – Consultant Gynaecology Oncology Surgeon
  • Vicki Martin – Consultant Biomedical Scientist Histopathology
  • Peter Perry – Database Coordinator