AQW 41706/22-27


Mr Nick Mathison
Alliance Party
Strangford


Tabled Date: 03/03/2026
Answered On Date: 31/07/2026
Priority Written: No


Question:
To ask the Minister of Health to detail any (i) support; and (ii) advice, provided to patients diagnosed with Lynch syndrome.


Answer:
My Department understands the importance of Lynch syndrome and its role in identifying individuals at increased risk of hereditary cancer, enabling earlier diagnosis, targeted surveillance, and improved patient outcomes through timely intervention and family risk assessment.
Work has been undertaken in recent years to improve the identification of patients with Lynch syndrome through universal testing of colorectal and endometrial cancer patients at diagnosis. In addition, a regional working group has considered options for the development of a Lynch syndrome registry. Funding was secured to support the compilation and validation of a regional list of patients with Lynch syndrome and other inherited cancer predisposition syndromes living in Northern Ireland, and this work has now been completed with patient lists held within Encompass.
Further work is ongoing to explore the development of a digital registry solution that would support the monitoring of surveillance requirements and improve coordination of care. Consideration is also being given to how such an approach could support individuals with other inherited cancer predisposition syndromes and rare diseases.
Patients diagnosed with Lynch syndrome are offered support and counselling through the Regional Genetics Service. This includes appointments with a genetic counsellor before and after genetic testing to discuss the implications of the diagnosis and provide information for patients and their families.
Where Lynch syndrome is confirmed, patients are referred to appropriate services for ongoing surveillance, including regular colonoscopy through local gastroenterology services and, where clinically indicated, referral to other specialties such as gynaecology. Patients are also advised to discuss risk-reduction measures, including the use of aspirin, with their GP or specialist clinician. While routine follow-up appointments with genetics services are not generally scheduled, patients can access further appointments and advice on request.