Patient experiences of the urgent cancer referral pathway—Can the NHS do better? Semi-structured interviews with patients with upper gastrointestinal cancer

Abstract

Background: Timeliness is viewed as a key feature of health-care quality. Internationally, this is challenging. In England, cancer waiting time targets are currently not being met. For example, between 2015 and 2018 only 71% of patients with upper gastrointestinal (UGI) cancer started treatment within the recommended 62 days of referral. Objective: We explored patients’ experiences to identify areas for service improvement. Design: Semi-structured interviews were conducted. Setting and participants: Twenty patients who were referred through the urgent (two-week) GP referral route and were within six months of receiving first treatment were recruited. Data analysis: Data from the interviews were analysed thematically. Results: Four themes were developed: organization of care; diagnosis; support; and views and expectations of the NHS. Patients described cross-cutting issues such as complex and varied pathways and uncertainty about what would happen next. They felt daunted by the intensity and speed of investigations. They were presented with a recommended course of action rather than options and had little involvement in decision making. They were grateful for care, reluctant to complain and resigned to the status quo. Discussion and conclusions: In order to meet patient needs, the NHS needs to improve communication and streamline pathways. Future cancer pathways also need to be designed to support shared decision making, be truly person-centred and informed by patient experience.