Aim of project
This project aimed to examine patient experiences of the myeloma treatment and care pathway.
Evaluating patient experience is important for both recognising what is working well and assessing where the myeloma community needs to focus more efforts. The National Cancer Patient Experience Survey provides a comprehensive overview of patients’ experience of NHS care, from the information they receive to how well they feel their care is delivered at different points in time. The 2014 survey was completed by 70,141 cancer patients in England, including 4,023 myeloma patients.
Overall myeloma patients were positive about their experiences of NHS care, with 58% rating it as ‘excellent’ and 33% rating it ‘very good’. However, in-depth analysis of their responses to questions on different stages of their care pathway reveals a far more variable picture. This project has usefully highlighted two encouraging areas with increasing numbers of patients being given the name of a clinical nurse specialist in charge of their care, and high levels of awareness of and participation in clinical trials. The analysis has also highlighted three areas where there is a very clear need for improvement.
- Diagnosis: Myeloma patients reported significantly poorer experiences of care before and during diagnosis than cancer patients overall.
- Informed decision-making: The findings demonstrate a need for better and more consistent information for myeloma patients when deciding on treatment options.
- Practical support and information: While not a dissimilar picture to other cancers, the findings suggest a lack of consistent support being offered to myeloma patients to live well with their cancer.
Who was involved with the project
Myeloma UK commissioned the survey provider, Quality Health, to provide us with the summary results for myeloma patients.
How this project will help Myeloma patients
There is an increasing emphasis on ensuring that patients receive integrated care between hospital, community and home settings. The results suggest that while it generally works well, there is room for improvement to make sure every patient experiences seamless, joined-up care across the whole care pathway. Myeloma UK will support the myeloma community to deliver this through continued development of resources for different professional groups across the range of settings in which they care for myeloma patients.
Acknowledgements and funding
This work was funded by Myeloma UK.
You can read the full report of this study here.