Recommendations:
Training for GPs & oncologists in Lynch syndrome needs to be a priority.
Improved communication between services about the Lynch syndrome pathway
Taking a person-centred approach to Lynch syndrome
Every patient should have a named contact in a mainstreamed clinic
All clinicians providing mainstreamed clinics should have access to appropriate guidance. This knowledge can then be shared with patients at the point of care
Reduce pathway variation and ensure geographical equity of care.
Dedicated, specialist clinicians trained in Lynch syndrome mainstreaming should be provided for all patients
Standardised patient information should be created and utilised across all regions and NHS providers
Lynch Syndrome App should be widely promoted among healthcare providers to help increase awareness of the condition.
Everyone diagnosed with Lynch Syndrome should be given information about Lynch Syndrome UK
Standardised information about ‘Living with Lynch’, talking to relatives, family planning, and mental health support should be created.
New processes around cascade testing should be considered to improve support and information provided for the patient and their families.
Consider concerns of/about family members
Regular, clear and consistent communication for patients whilst awaiting appointments or results is necessary.
Increased psychological support
Training given to all clinicians (not just those working with Lynch) about gender inclusivity and how to ensure that patients feel welcomed and respected within any NHS service.
https://southeastgenomics.nhs.uk/new-report-how-can-we-improve-the-experience-for-people-who-need-to-be-screened-for-lynch-syndrome/
Lynch Syndrome Ireland 