Download National Cancer Patient Experience Survey

Raising the bar on myeloma
patient experience
A snapshot report of findings from the National Cancer Patient
Experience Survey.
Every year a survey is sent out to cancer patients across England. The survey
is called the National Cancer Patient Experience Survey (NCPES) and it asks
cancer patients what they think about their NHS care. It is the largest survey
of its kind and involves over 70,000 cancer patients, including more than
4,000 myeloma patients.
Myeloma UK used the results from the latest survey to find out about myeloma patients' experiences of their treatment and care. This document
highlights some of the key findings and implications for the myeloma community.
Our full report provides more detailed findings. You can download it from
our website: www.myeloma.org.uk.
Why understanding patient experience
is important
Despite significant advances in treatment and survival, myeloma remains a very complex and unpredictable cancer to live with. How patients experience treatment and
care on the NHS has a big impact on their quality of life and ability to live well with myeloma.
It is important that every patient can access the same high standards of treatment and
care wherever they live.
Understanding what myeloma patients think about the treatment and care they receive
at key points in time can help Myeloma UK and the wider myeloma community consider
how to improve care and support for all patients.
What we found
Overall myeloma patients were positive about their experiences of NHS care: 58% rated it as ‘excellent’ and 33% rated it as ‘very good’.
excellent
very good
However, looking at myeloma patients’ views about different aspects of their experience
reveals a much more variable picture.
The positives
Access to a clinical nurse specialist
The importance of clinical nurse specialists
(CNS) to patient care is well-known, but
access to a CNS has not always been
consistent.
The latest NCPES results show that access
to a CNS for myeloma patients is steadily improving.
88% of myeloma patients said that they had
the name of a CNS in charge of their care.
Involvement in clinical trials
Another positive result for myeloma
patients was the opportunity to be
involved in research.
The findings show that nearly half of all
myeloma patients (48%) were asked if they
wanted to take part in a clinical trial. This
was much higher than average where only
three in 10 cancer patients overall (31%) had
a discussion about clinical trials.
The challenges
Route to diagnosis
Myeloma patients were far more likely than most cancer patients to visit their GP many
times before getting a diagnosis. One in five (20%) myeloma patients said they saw their
GP five or more times before being referred to a hospital specialist. This compares to less
than 10% of all cancer patients.
Information to support decision-making
Like all cancers, many of the treatments used to control myeloma and treat symptoms involve a risk of side-effects. However, one in every three myeloma patients
felt that side-effects were not fully explained to them when making a decision about
treatment.
Practical help to live well with myeloma
One in five myeloma patients said they did not receive information on support or self-help groups, but would have liked to.
1 IN 5 MYELOMA PATIENTS DIDN’T RECEIVE INFORMATION
ON SUPPORT GROUPS BUT WOULD HAVE LIKED TO
A further 45% of myeloma patients said they would have liked more information on getting help to deal with the financial impact of living with myeloma.
How do we raise the bar?
The results reported here are a brief snapshot of the bigger survey, but they highlight some of the important ways in which myeloma patients experience
their care. They show that as a myeloma community working together we can
- and must - build on our existing achievements to raise the bar for every patient.
In light of these findings we will redouble our efforts to:

Raise awareness of opportunities for patients to take part in clinical trials

Tackle the difficulties preventing myeloma from being diagnosed early

Make sure every myeloma patient can access the information and support they need to make decisions about their treatment and care

Make sure myeloma patients and families have information about financial help and the practicalities of living with myeloma
You can read the full findings and recommendations in the main report.
To get your copy visit www.myeloma.org.uk or call 0131 557 3332.
Myeloma UK, 22 Logie Mill, Beaverbank Business Park, Edinburgh EH7 4HG
T: 0131 557 3332 F: 0131 557 9785 E: [email protected] Charity No: SC 026116