Embedding patient voice in cancer service improvement: A qualitative study of patients’ experience of the NHS cancer diagnostic care pathway


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Sarah Sowden1,Anna Haste1,Linda Sharp1,Mark Lambert2,Richard Thomson1
1Institute of Health and Society, Newcastle University,2Public Health England, North East Centre

Abstract

Background

The 62 day NHS cancer waiting times target for urgent GP referrals is frequently not achieved. Patient insight is essential to understanding why this is the case to inform efforts to reduce waiting times. This study aimed to explore patients’ experiences of the NHS upper gastrointestinal (UGI) cancer diagnostic pathway, seek patients’ ideas for service improvement and identify transferrable insights for other areas of cancer care.

Method

Qualitative semi-structured interviews were undertaken in 2017 with 20 patients within 6 months of receiving their first treatment for UGI cancer referred through the urgent (2 week) GP route in the North East and Cumbria. Thematic analysis was undertaken.

Results

Key themes identified were organisation of care, diagnosis, support and expectations of the NHS. Some patients were offered immediate access to testing, others required specialist approval first. Patients’ were often unclear about the purpose of visits and journey ahead. Patients contrasted the ‘urgency’ indicated by the requirements placed upon them (and therefore often upon family and friends) to attend numerous appointments, at short notice, in close succession, often across multiple hospital sites, with the seemingly long time taken to receive results, and the unsettling time spent waiting and ‘not knowing’ the prognosis. Patients’ were grateful for the NHS and described how staff were time-pressured but working in their best interests. They did not want to be seen as ‘complaining’ and were often reluctant to express concerns or suggest improvements.

Conclusion

Current pathways are complex, varied, can be poorly communicated to patients and do not always appear to be patient-centred. Clearer communication is necessary but insufficient without a review of the diagnostic pathway to reduce unwarranted variation and simplify the patients’ journey. Patients’ gratitude for the NHS and stoic acceptance of the status quo should not be seen as justification for no change.