Clinical Practice Services Myeloma UK Edinburgh, Scotland, United Kingdom
Introduction: Myeloma services that are responsive to individual need are vital to supporting a positive patient experience. The Myeloma UK Clinical Service Excellence Programme (CSEP) supports hospitals to deliver optimum care to myeloma patients through a process of assessment and accreditation.
During CSEP, patient feedback is gathered using a survey that includes the question ‘If you could change one thing about your myeloma treatment and care, what would it be?’ An earlier analysis of responses to this question prompted the authors to pose a similar question to healthcare professionals (HCPs). The aim was to compare responses to further inform how service development could improve patient experience.
Methods: Using email and Microsoft Teams calls, feedback was collated from specialist nurses and haematologists in reply to the question ‘If you could change one thing about your myeloma service, what would it be?’ Further responses from patients collected since the first analysis were added to the existing patient data and re-analysed.
Results: Between 2015 and 2023, over 1000 responses were gathered from patients, nurses and haematologists from more than 60 hospitals. Patient responses including negative feedback or suggested changes were included in the analysis, as were all HCP responses. As a result, over 500 responses were analysed and thematically organised.
HCP responses were grouped into seven themes: clinic waiting time, community treatment delivery, dedicated hospital space, holistic care, research and treatment, staffing, and other resources integral to the service. Patient responses were grouped into eight themes: clinic and pharmacy waiting time, communication, continuity of care, coordination of care, holistic care, hospital facilities, travel, and access to treatment.
Themes from patients and HCPs on issues of hospital space and facilities, waiting times, staffing, resources, and travel for treatment and care, intersect to highlight systemic logistical problems within UK health services. Themes of holistic care, community delivery, communication and continuity of care suggest the need for services to be more patient-centred for this often elderly, frail, patient cohort.
For HCPs, having adequate staffing (particularly clinical nurse specialists) was the key concern. Pressure on nurse time reflects recent advances in myeloma treatment and survival which has translated into larger caseloads and more patients being on treatment needing review. Consequently, patients are impacted by longer waits and HCPs struggle to manage patients’ individual needs.
Conclusions: Broadening this analysis to include HCPs provides increased insight into which service changes are needed to improve patient experience. By combining the voice of both patients and the staff caring for them, a stronger case for change can be made.
