The role of the icc coordinator within the NHS-SUD pilot project

Type of funding sources: None.

Inherited Cardiac Conditions services across the country provide excellent care to families affected by sudden unexpected death, with many Coroners and Pathologists facilitating appropriate referrals and retention of post mortem tissue samples for future genetic testing. However, service provision varies greatly resulting in missed opportunities for tissue retention, signposting to ICC services and disparities in clinical screening. To ensure this gap is closed, the seven NHS Genomic Medicine Service Alliance (GMSA) regions have partnered with the British Heart Foundation to recruit seven ICC coordinators, tasked with coordinating the delivery of a nationally standardised NHS - Coronial Sudden Unexpected Death (SUD) pilot pathway.

The ICC coordinator’s main role is to improve the processes and collaboration between the Coronial and their nearest ICC service, increase the number of affected families who are assessed in an NHS ICC service and facilitate genomic counselling and testing at the beginning of the pathway. ICC nurses and genetic counsellors have been recruited into these posts. Their unique skillsets and existing links with pathologists, coroners, coroner officers, families, nurses, geneticists, support groups and cardiologists maximises the deliverables for the duration of the pilot.

30 cases of sudden unexplained deaths eligible for entry into the pilot have been signposted and 65 at risk family members have been identified by the seven sites. Some of the most notable results have been facilitation of family referrals, cardiac-genomic counselling, and timely results dissemination. Furthermore, ICC Coordinators have established relationships and delivered training to pathologists, coroner officers and local MDTs, ensuring consistent pathway delivery. Genomic samples are tracked and transferred to the regional genomic laboratory hubs in a standardised manner. Collaboration with external evaluators is ongoing and methods of data capture have been established.

To ensure national delivery and equitable access to genomic testing, the ICC coordinator role is vital to each ICC service and coronial network. We have highlighted some of the unique skills and relationships needed for a national rollout. Following the outcome of the project evaluation, this role can be expanded to other cardiac nurses and genetic counsellors in other regions.