Myeloma UK has initiated a project to analyse the results of the England 2018 National Cancer Patient Experience Survey to better understand the myeloma patient experience.
The National Cancer Patient Experience Survey provides a snapshot of patients’ experience of NHS care, from the information they receive to how well they feel their care is delivered. The 2018 survey was completed by 73,817 cancer patients in England, including 4,966 myeloma patients.
So far, we have published reports on the patient experience of clinical nurse specialists (CNS), GP visits and diagnostic tests and plan to publish reports on the myeloma patient experience of ‘finding out what was wrong’ and ‘deciding on treatment’.
The patient experience of clinical nurse specialists
Overall, the myeloma patient experience of clinical nurse specialists was positive and highlighted the importance and value of clinical nurse specialists.
- Nine out of ten myeloma patients got the name of a clinical nurse specialist to support them through their treatment
- 95% of myeloma patients who got the name of a clinical nurse specialist had contacted them. The majority of them found this easy to do
- Among myeloma patients who asked their clinical nurse specialist questions, the majority received answers that they could understand
However, there were some differences in patient experience across demographic groups with black and minority myeloma patients less likely to have understandable answers to their questions compared to white myeloma patients.
The patient experience of GP visits
Looking at the patient experience of GP visits was mixed.
- Myeloma patients were more likely to see their GP multiple times before seeing a specialist compared to other cancers in general
- A third of myeloma patients needed to see their GP three or more times before being told that they needed to go to the hospital about their cancer
- Only one-quarter of myeloma patients saw their GP just once, compared to almost half of patients for other cancers (Figure 1)
The patient experience of diagnostic tests
The diagnostic results also should a mostly positive experience.
- Nine out of ten myeloma patients getting all the information needed about their diagnostic test beforehand
- Nine out of ten myeloma patients felt that the amount of time they had to wait for their test to be done was about right
- However, only three-quarters of myeloma patients received an explanation of their test results that they could completely understand
- There were also clear ethnic differences in myeloma diagnostic care, with black and minority patients having a poorer diagnostic experience compared to white patients
Last year Myeloma UK developed the “Test and investigations infoguide” to help patients understand more about the types of tests they are having.
You can read the summary reports of patient experience here.