Uncovering the hidden workload of providing cancer care in the community

Purpose: The role of primary and community care in cancer care in the UK is not explicitly defined. The exact nature of the workload to do with people with cancer is unclear. This evaluation aimed to explore some of the workforce’s opinions of what cancer care they do that goes unrecorded or unrecognised. Method: An exploratory sequential design was used in surveying and interviewing primary and community care staff in London. Interviews were analysed from a phenomenological perspective. Results: 92 survey responses were received, and 7 interviews carried out. An estimated 13% of all patients seen by respondents had a cancer diagnosis, 3% had a suspected cancer. Interviews revealed that systems in place didn’t allow for full capture of cancer care workload. In particular, the knock-on effects of the unpredictability of cancer was noted and people presenting with vague potential cancer symptoms were reported. Relationship building with people with cancer and their families was unrecognised, essential work. Expectations of specific cancer knowledge created a workload burden. Conclusions: There is an opinion of primary and community workforce that there is hidden, unrecognised work in cancer care. Efforts to record and recognise this workload could improve cancer care delivery and coordination.