Background Over recent years, several initiatives have impacted on the referral of patients to secondary care, most notably targets for urgent referral in suspected cancer and the patient choice agenda. At the same time, improved long-term survival in cancer has increased numbers attending follow-up, doubts about the effectiveness of specialist follow-up have emerged, and alternative models of follow-up have been tested.
Aim The aim of the study was to explore patient and carer perspectives on the flexibility and responsiveness of cancer services. This article focuses on findings relating to referral, subsequent outpatient appointments and cessation of outpatient follow-up.
Methods Issues were explored in a qualitative study using face-to-face interviews with a purposive sample of 54 people affected by cancer. Data were analysed concurrently with data collection, using qualitative analysis software.
Findings The study gave rise to a number of salient themes. Links were identified between three of these: choice and responsiveness during referral; the flexibility and responsiveness of outpatient appointment systems; and negotiating cessation of follow-up. It appeared that policy on urgent referrals might be adversely affecting practice relating to appointment systems and the continuance of follow-up.
Discussion and conclusions Hospital-based cancer follow-up is being given decreasing priority because of doubts about effectiveness and a target-driven focus on referral. This is impacting on patients, who may value outpatient follow-up as a ‘safety net’ but have difficulties in obtaining appointments, and may be discharged without negotiation or adequate support. For these reasons, new forms of flexible/responsive aftercare are urgently needed.