Testing for Lynch syndrome has been recommended by the National Institute for Health and Care Excellence (NICE) as important in identifying genetic predisposition to bowel cancer, which could lead to better outcomes for patients through earlier diagnosis and treatment. Whilst Lynch testing is being carried out in some areas, we are aware that the NICE guideline is not being followed by all clinical commissioning groups (CCGs) meaning that some patients and their families are not receiving the test.
The NICE guideline does not carry a funding direction and therefore commissioners (CCGs and NHS England) need to consider the implementation of the guidance alongside other priorities and any financial impact on pathology services and genetic testing services. Also, the NICE guidance recommends, but does not mandate, how healthcare professionals should apply the guidance to those diagnosed with bowel cancer. It is for the clinician to take this information into account (alongside individual circumstances and medical history) when determining the best course of action for the patient.
NHS England will be working with CCG pathology service commissioners during 2018/19 to determine whether we can jointly develop a policy position relating to genetic testing for Lynch syndrome that takes in to account the NICE guidance and helps to ensure that patients and their families receive the test where appropriate.