The Teesside Cancer Family History Service: change management and innovation at cancer network level

Abstract

The Teesside project took the underlying principle of the Kenilworth model–that people with a family history of cancer should be ‘triaged’ and signposted to appropriate clinical services–and applied it to a whole clinical cancer network in which inequity was the major driver for change. Unlike the Kenilworth model, the Department of Health/Macmillan Cancer Support-funded pilot project in Teesside embedded genetic risk assessment at secondary care level. The project took a ‘bottom up’ approach that engaged a wide variety of stakeholder groups and identified key challenges that formed the basis of a clear strategic plan. A number of specialist cancer nurses across the network had independently developed risk assessment roles over preceding years: these roles needed to be redefined prior to the creation of a small team of genetic risk assessment practitioners (‘GRAPs’). This innovation challenged existing nursing roles on a local and national level. In turn, however, we were able to introduce a simple, single network-wide referral pathway, reducing workload on both primary care and tumour-specific services; to adopt a standardised genetic risk assessment pathway; and to incorporate risk assessment as a key step in the decision to enrol an individual in a clinical screening programme. Collaborative audit proved to be a useful way of engaging stakeholders and holding their attention throughout the three-year project, proving the value of the project in their terms, and embedding the changes we had made. The keys to success in this project were inclusiveness, transparency and clear strategic management.