In most cases, a person will be diagnosed with Lynch syndrome following a cancer diagnosis.
People may also be identified with Lynch syndrome after a family member has been diagnosed with the condition (for example, cascade testing), or, less frequently, for those with a strong family history, by referral for genetic testing from their GP.
Following a diagnosis of Lynch syndrome and treatment of any cancers, most of the contact for patients will be with the NHS Bowel Cancer Screening Programme and their primary care team.
Fragmentation of Lynch syndrome care
A persistent challenge reported by people with Lynch syndrome is a lack of consistent and coordinated health care to help support them to manage their condition generally.
Improved communication from secondary and tertiary care is needed to enable consistent coding of Lynch syndrome on patient health records and for primary care to fulfil its role as the ‘linchpin’ of comprehensive care.
Lynch Syndrome Ireland 