The East of England Lynch Syndrome Expert Network (EoELSEN) is comprised of a team of specialist health care professional across a range of relevant specialists including Clinical Genetics, Genetic Counselling, Gynaecological Oncology, Colorectal Surgery, Gastroenterology, Oncology, Histopathology, Specialist Nursing, Clinical Scientists, together with dedicated administrative support. We also have close links with other specialties whose expertise can be accessed easily, when required.
Which area do we cover?
We provide expert, equitable care for individuals affected by Lynch Syndrome across the East of England. We are aligned to the East GMSA and the North and South East Cancer Alliances.
Lynch Syndrome (LS) is a hereditary cancer syndrome with a population prevalence of 1 in 350. At the time of writing it is estimated that only around 5% of people with LS in the UK have been identified. This is likely to increase as universal screening for LS in individuals affected by colorectal or endometrial cancer is established.
The most common index malignancies in LS are bowel and endometrial cancer.
Identifying LS is important to:
- Prevent or reduce the risk of future cancers – a diagnosis of LS enables targeted risk reduction of LS-associated cancers. Personalised interventions may include by lifestyle changes, targeted bowel screening and risk-reducing treatments such as medication and surgery.
- Detect of cancers at an earlier stage – a diagnosis of LS will raise awareness of risk, with screening and surveillance opportunities which may detect cancers at earlier stages, with better long term outcomes and the potential for less intense treatment requirements.
- Enable access to tailored treatment – if someone with LS has cancer, they may be able to access novel personalised cancer therapies such as immunotherapy or more specialised surgery, tailored to LS.
- 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. Identifying more people with LS will allow many cancers to be prevented, or treated early. There may also be options when planning a family.
How will the EoELSEN help?
The EoELSEN will provide a central team and location for the delivery of comprehensive LS specialist care and advice. The goal is to eliminate inconsistencies and inequities by identifying LS patients and providing them with continuity of care, and streamlined access to specialist expertise when needed. Inter-specialty links will support LS patients who require access to more than one specialist service.
The EoELSEN will ensure:
- Healthcare professionals can access specialist advice on behalf of their patients, through referral to the Lynch Syndrome advisory MDT
- Routine surveillance of LS patients is delivered across the East of England
- LS-informed surgery will be offered where appropriate, such as consideration of subtotal colectomy, gynaecological risk reducing surgery, and joint speciality operating
- Access to a LS specialist for patients concerned about symptoms
- Continuity of care for individuals with LS and their family members
- Universal access to LS testing for people affected by endometrial or bowel cancer is embedded in the cancer MDTs
- Supporting ongoing education of healthcare professionals, including delivery of mainstream germline testing
How do I refer patients to the EoELSEN?
- Clinicians or patients based at Cambridge University Hospitals NHS Foundation Trust (CUH): Cases can be referred via an EPIC order using ‘REF585 OPD REF MDT Lynch Syndrome’.
- External referrals should can be made by completing our referral form here and sending it via email to email@example.com
Please include all relevant details to facilitate an informed discussion.
Once the referral is received, our administrator will confirm its receipt, and follow-up with details of the meeting.
Patients can seek a referral to the EoELSEN through their clinical geneticist or hospital doctor.
Core members of the EoELSEN
Cambridge University Hospitals NHS Foundation Trust
- Colorectal: Liz Tweedle (Consultant), Lauren McCrisken and Nyasha Muza (Clinical Nurse Specialists)
- Gastroenterology: Massimiliano Di Pietro (Consultant), Sibu Varghese (Consultant)
- Genetics: Ruth Armstrong (Consultant)
- Genomics: James Drummond (Consultant)
- Gynaecology: Helen Bolton (Consultant), Linda Dayal (Clinical Nurse Specialist)
- Oncology: May Stancliffe (Consultant)
- Pathology: Liz Moore & Brian Rous (Consultant / Gynaecology), Ahmad Miremadi (GI)
- Upper GI Surgery: Ayesha Noorani (Honorary Consultant)
- Administrative: Skye Johnson
- Psychological support via Maggie's (opens in a new tab)