Download Wales Cancer Patient Experience Survey

Wales Cancer Patient Experience Survey
National Report
January 2014
Prepared by Quality Health
Contents
1.
Foreword ........................................................................................................................ 3
2.
Executive summary ........................................................................................................ 6
3.
Response rate & helpline calls ..................................................................................... 13
Response rate .................................................................................................................. 13
Helpline calls .................................................................................................................... 14
Future research ................................................................................................................ 14
4.
Patient demographics ................................................................................................... 15
5.
Section by section ........................................................................................................ 19
Seeing your GP ................................................................................................................ 20
Diagnostic Tests ............................................................................................................... 24
Finding out what was wrong ............................................................................................. 29
Deciding the best treatment ............................................................................................. 34
Clinical Nurse Specialist / Key Worker ............................................................................. 41
Support for patients .......................................................................................................... 52
Operations ....................................................................................................................... 59
Hospital doctors ............................................................................................................... 62
Ward nurses..................................................................................................................... 66
Hospital care and treatment ............................................................................................. 71
Information before leaving and home support .................................................................. 78
Day / outpatient care ........................................................................................................ 83
Outpatient appointments .................................................................................................. 87
Care from general practices ............................................................................................. 88
Overall NHS care ............................................................................................................. 90
6.
Special analyses and demographics ............................................................................ 95
Differences between tumour groups ................................................................................ 95
Differences between Boards / Trust ................................................................................. 97
The impact of the Clinical Nurse Specialist and Key Worker ........................................... 99
The impact of assessment and care plans ..................................................................... 101
The impact of long term conditions ................................................................................ 102
Differences relating to length of time since first treatment ............................................. 105
The impact of social deprivation ..................................................................................... 106
The impact of age .......................................................................................................... 108
The impact of gender ..................................................................................................... 110
The Impact of ethnicity ................................................................................................... 111
The Impact of sexual orientation .................................................................................... 112
Differences between Welsh and English speakers ........................................................ 113
1
7.
Survey development and methodology ...................................................................... 114
Development of the questionnaire ................................................................................. 114
Methodology................................................................................................................... 115
The Survey process ....................................................................................................... 116
Data processing and analysis ........................................................................................ 117
Reporting ....................................................................................................................... 119
8.
Appendix A – Tables showing significant difference .................................................. 120
9.
Appendix B - Full Survey Results ............................................................................... 127
Tables
Table 1 Response rate by Board/Trust ................................................................................ 14
Table 2 Tumour group by response .................................................................................... 15
Table 3 Respondents by gender ......................................................................................... 16
Table 4 Respondents by age group .................................................................................... 16
Table 5 Respondents by ethnicity........................................................................................ 16
Table 6 Respondents by sexuality ....................................................................................... 16
Table 7 Respondents by main employment status .............................................................. 17
Table 8 Respondents with long term conditions .................................................................. 17
Table 9 Length of time since respondents first treated for this cancer ................................ 17
Table 10 How cancer has responded to treatment .............................................................. 18
Table 11 Respondents preferred language for receiving information and treatment ........... 18
Table 12 Whether respondents got information in their preferred language ....................... 18
Table 13 Tumour groups with highest and lowest scores ................................................... 95
Table 14 Differences between cancer groups ..................................................................... 96
Table 15 Significant differences between Boards ............................................................... 97
Table 16 Significant differences between hospital scores ................................................... 98
Table 17 Differences by CNS .............................................................................................. 99
Table 18 Differences between those with and those without an LTC ................................ 102
2
1. Foreword
Mark Drakeford, Minister for Health and Social Services and
Susan Morris, General Manager for Wales, Macmillan Cancer Support
Patients are experts in their own right. That is why this survey was commissioned
and why we are pleased that so many people took the time to provide detailed
feedback on the service they received.
A response rate of 69% means the views of 7,352 patients are contained within this
analysis. The results provide a robust and comprehensive analysis of people’s
experiences of cancer care in Wales. We must start, therefore, with a thank you to the
patients who took the time to provide detailed answers to 74 questions on their care.
Overall, the survey results demonstrate a positive experience of cancer care in Wales.
89% of patients rated their care as either excellent (58%) or very good (31%), with only
1% saying care was poor. This is a very clear indication that overall experience is a good
one and provides a high baseline for further improvement.
We were also pleased to see 81% of patients saying they felt they were treated as a
whole person and not as a ‘set of symptoms’. Whilst there is room to improve on this
figure to make sure that the 1 in 5 who did not feel they were treated as a whole person
receive the care they need, it demonstrates that in large measure the commitment to
person-centred care is feeding through to the delivery of services.
In the post-Francis world, there has been much focus on the quality of care provided by
health care professionals and how we can make sure patients and their families are
treated with dignity and respect. We are pleased that the survey showed that the vast
majority of Welsh cancer patients surveyed (85%) said they were always treated with
respect and dignity by staff, 87% had confidence and trust in the doctors and nurses
caring for them and 94% said they had enough privacy when being treated.
However, there is more to be done to meet the holistic needs of patients. Whilst 68% of
patients said they had discussed or been given information about the impact of cancer on
work or education, only 51% said they had been given information about how to get
financial help or benefits by hospital staff. The Macmillan report, ‘Counting the Cost of
Cancer’, demonstrates the importance of these issues for patients. There is a clear need,
therefore, to improve the knowledge of health care professionals to signpost people to
appropriate information and support to meet their needs beyond the clinical.
3
Very evident in the results is the impact that a Clinical Nurse Specialist (CNS) or Key
Worker has on the patient’s overall experience of care. Patients who had a CNS were
more likely to be positive about their care in 59 questions in the survey. The overall rating
of care as excellent or very good is 74% for those without a CNS, but rises to 91% for
those who had a CNS. This is also clear evidence of the importance of having a named
and skilled key worker supporting the patient on behalf of a wider team of professionals.
It is Welsh Government policy that every individual with a diagnosis of cancer must have
a Key Worker. However, only 66% of the patients surveyed said they were given the
name and contact details of their Key Worker with the variation between Health Boards
ranging from between 58% and 75%. These results demonstrate the need for greater
clarity in defining the role of the Key Worker and more consistency in its implementation
across Health Boards. In contrast, 88% of patients said they had been given the name of
a Clinical Nurse Specialist. There clearly is more work needed to understand the
relationship between the roles of Clinical Nurse Specialists and Key Workers and how
they can work with their colleagues to meet the needs of patients.
The survey demonstrates that, in very important ways, patients see different parts of the
NHS working well together. 96% of patients said their cancer doctor had the right
documents and 92% said their GP was given enough information about their condition
and treatment by the hospital. However, only 65% said the different people treating and
caring for them always worked well together. As the number of people living longer with
and beyond cancer increases, and as care becomes more complex and personalised, it is
more important than ever that care is coordinated across different hospital sites and
across primary, community and secondary care as well as in social care settings.
One of the important pieces of information stemming from this survey is the level of
variation between Local Health Boards and Trust, between hospital sites within Local
Health Boards and Trust and the variation in experience between people with different
types of cancer.
Responses are consistently more positive for those seen in Velindre Hospital in Cardiff
and we must congratulate the Trust for its patient-centred delivery. Whilst we
acknowledge that Velindre is a unique and specialist cancer centre, there is a clear
challenge for the best practice and learning from this hospital to be shared and made the
norm right across Wales.
The variation between tumour groups, or types of cancer, is also evident in the survey
results. Breast cancer patients reported having a better experience than other cancer
patients, whilst sarcoma, lung and urological cancers all reported a less positive
experience. We must work with health boards to use this data to better understand why
the patient experience is different and explore how the experience through the cancer
pathway can be consistently good for all forms of the disease.
4
These results tell us that the focus on person-centred care, as set out in the Cancer
Delivery Plan, is the right focus. Person-centred care and meeting the holistic needs of
patients clearly impacts in a positive way on people’s overall experience of care.
The system on the whole is connected and does work together but we need to drive down
variation between Local Health Boards and Trust across Wales as well as the variation
between the experience of people with different types of cancer.
But why is having a good experience of cancer care so important? A good patient
experience leads to patients feeling supported, respected and meaningfully involved in
decisions about their care whether that’s at diagnosis, during treatment or after treatment
has finished. It’s also important as it recognises that cancer affects the whole of people’s
lives including the effect it has on family and friends. A study has also shown that a
positive experience can reduce a patient’s length of stay in hospital and staff turnover,
which can save the NHS money.
Whilst the overall experience of cancer patients in Wales is a positive one, the results of
this survey identify clear challenges and areas for improvement. It is now the task of Local
Health Boards and Trust with the leadership of the Welsh Government and the Cancer
Implementation Group, and the support of organisations such as Macmillan, to deliver
tangible improvement for patients which can be measured in the results of the next
survey.
5
2. Executive summary
The results of the 2013 Wales Cancer Patient Experience Survey (CPES) show that
cancer services are well regarded by patients but that there are a number of
significant improvements that can be made.
Background to the Survey
The Together for Health - Cancer Delivery Plan was published by the Welsh Government
on 13 June 2012. The Delivery Plan provides a focus for cancer services in Wales setting
out a clear set of actions and measurable outcomes to drive service improvement. There
is a clear focus in the plan on meeting people’s need stating the objective;
‘People are placed at the heart of cancer care with their individual needs identified and
met so they feel well supported and informed, able to manage the effects of cancer’.
Chapter four of the plan makes a commitment to undertaking a national patient experience
survey. This survey had been produced through a partnership between the Welsh
Government, Macmillan Cancer Support and Quality Health.
The arrangement brings together those responsible for cancer policy, an organisation
driven by a relentless focus on improving the experience of patients and a practiced
survey organisation who have delivered similar surveys throughout the UK.
The survey provided an opportunity to test Welsh Government policy, specifically asking
questions on flagship polices such as key workers and written care plans as well as
allowing a better understanding of whether certain cancer types, ethnicity, communities,
age groups or genders experience poorer care. The survey therefore provides a wealth of
data to evaluate the implementation of current policy and help to shape the future
direction of cancer services in Wales.
This document provides a national perspective on the results of the survey. Reports for
each Local Health Board (Excluding Powys Teaching Local Health Board) and Velindre
NHS Trust have been produced and will be published alongside this report.
These reports will evaluate the results in greater detail at a local level. Powys Teaching
Local Health Board has been excluded as the majority of cancer patients do not receive
their treatment within the LHB boundary, therefore there was not a statistically significant
sample to evaluate the LHB’s services.
A total of 10,945 patients who had received treatment for cancer from 7 NHS Health
Boards/Trust were included in the sample for the Wales Cancer Patient Experience
Survey. These patients fell into 13 different cancer groups. A total of 7,352 patients
responded which represents a response rate of 69%.
6
Highlights and key messages

The overall scores given by patients in Wales to the cancer patient experience
survey were positive. Scores were 80% or higher on 31 of 67 scored questions in
the survey; however, scores of 70% or lower were given by patients on 19
questions so there is scope for improvement in some areas of clinical practice and
in support for patients.

Patients with some types of cancer are more likely to report poor experience than
others. Patients with rarer cancers, and those with Lung cancer, are less likely to
be positive than patients with some of the more common cancers (such as Breast
cancer) and some of the data from these tumour groups is different in character
from the same groups surveyed elsewhere. There is a broad range of factors which
influence the experience of individuals and the information in this survey must be
explored to help understand variation of experience.

There is considerable variation in the coverage both of Key Workers and Clinical
Nurse Specialists across Wales, by Board, Hospital and tumour group. The
presence of a Key Worker or a Clinical Nurse Specialist is strongly associated with
good care as perceived by the patient and it is therefore critical that these gaps in
coverage are addressed. Patients who say they have a CNS or a Key Worker are
much more likely to report positive care than are patients without one. This is true
on almost every question in the survey and this is seen to be a powerful and
important indicator of good care to patients.

A number of the poorer scores given by patients are in respect of information to
them about key aspects of their condition, treatment and care. Ensuring that
patients have high quality, understandable information about their condition,
treatment plans, potential side effects, availability of financial and emotional
support, and where to get help after discharge from hospital, is vitally important.

Specifically, the creation of well-written, considered care plans for each individual,
with serious patient involvement embedded in the process to address their
concerns, is a priority. At present only a small minority of patients are being offered
such care plans.

There are particular issues around the crucial point of transition between care in
hospital and care given by local health services and social services outside
hospital. Although many patients report good care at this transition point, there are
others who say that they did not get enough support from locally-based health and
social services near their home.

Variation in the quality of service and care is present at Board level and particularly
at individual hospital level. The most positively scored services are identified as
being at Velindre, Cardiff and the Vale, and Betsi Cadwaladr; the least positively
scored services are at Abertawe Bro Morgannwg, Cwm Taf and Hywel Dda Health
Boards. Singleton, Morriston, Glangwili and Royal Glamorgan hospitals are those
with the least positive scores as measured against the all-Wales data. The most
positive scores at hospital level are at Velindre, Llandough, and Ysbyty Gwynedd.
7

There are some variations in performance as seen by different patient groups, by
gender and age, and those with some long term conditions or co-morbidities, such
as those with a mental health or learning disability. Some categories of patients in
each of these groups are considerably less positive about the services they receive
than are others.
Key points from the detailed analyses
Differences between patients with different cancers
Despite the high overall scores on many questions in the survey, there are wide
differences of view between patients with different kinds of cancers. Patients with Breast
cancer were the most likely to be positive on many questions; and the least likely groups
of positive patients were in the Urology, Sarcoma, and Lung tumour groups. There are
many factors which contribute to this variation, such as the complicated nature and type of
particular cancers; understanding how to drive down this variation will be important.
Variations between Health Boards / Trust and individual hospitals
There are considerable variations between scores at Board/Trust and hospital level in
Wales. One Board - Powys - provides palliative care in local hospitals, and a small
number of these patients were included in the survey; but Powys does not provide
inpatient or day case care for cancer patients in active treatment where operations,
radiotherapy or chemotherapy may be provided. Therefore, although the data for Powys
(6 respondents only) has been retained in the dataset, Powys has been excluded from the
range scores identified in this report, as the inclusion of this data would have introduced
misleading information on the ranges of scores by Local Health Board/Trust.
At the level of the 6 Boards/Trust providing adult cancer care in their own hospitals, and
the one Trust (Velindre), it is clear that scores for patients treated entirely on the Velindre
site are higher on a wide range of questions than are scores elsewhere. There are many
scores which are statistically significantly different on individual questions between a
Board and the national score; but the range of difference is wider at individual Hospital
level.1
Analysis shows that the largest numbers of positive scores (in comparison to the national
scores) are to be seen at Ysbyty Gwynedd, Llandough, and Velindre. The largest
numbers of lower scores (in comparison to the national scores) are at Glangwili,
Morriston, Singleton, and the Royal Glamorgan hospitals. Singleton has the widest
variation from the national scores of any hospital in Wales.
Wherever the term ‘significant’ is used in this report, it means that the scores in question have been tested 8
and are statistically significantly different from either the all-Wales scores or the particular group being
analysed.
1
Special analyses and demographics
We have also analysed the Welsh CPES data to assess the impact of the Clinical Nurse
Specialist and Key Worker, the length of time since first diagnosis with cancer and the
impact of multiple deprivation on the results as well as a number of important independent
variables such as age, and gender.
We have also analysed the Welsh CPES data to assess the impact of the Clinical Nurse
Specialist and Key Worker, the length of time since first diagnosis with cancer and the
impact of multiple deprivation on the results as well as a number of important independent
variables such as age, and gender. In all cases where we have undertaken these
analyses, the results are congruent with the results of similar analyses undertaken on
other cancer patient surveys. Work by the Cambridge Centre for Health Services
Research on the 2012 CPES data in England indicates that differences in experience by
socio-demographic characteristics are largely independent of each other, with very limited
confounding between the variables, and we expect this will also prove to be the case in
Wales.
Clinical Nurse Specialists and Key Workers

In the Wales CPES 2013, as in previous cancer surveys elsewhere, the importance
of patients having the name of a Clinical Nurse Specialist (CNS) is confirmed.
Patients with a CNS gave more positive answers than did those patients who did
not have one; and these differences are all statistically significant. The scale of
these differences, between those with a CNS and those without one, is very
substantial.

The findings are the clearest possible indication of the quality of care given by
specialist cancer nurses, the manifest impact that they have on the services given
to cancer patients, and the substantially improved understanding of treatment
options and prognosis which flow to patients from contact with their CNS - as
shown by the very large differences in scores given by patients who have a CNS
and those who do not.

Fewer patients in Wales say they have Key Workers as distinct from CNSs. Both
CNSs and Key Workers have a substantial positive effect on patients views of their
care; having either or both a CNS and a Key Worker is associated with higher
scores from patients on almost all questions in the survey. Those patients who had
a CNS who was also their Key Worker were more positive on a slightly larger
number of questions than was the case for patients whose Key Worker was not
their CNS. The coverage of Key Workers varies considerably between Boards /
Trust but especially between hospitals.

It is clear that the impact of the CNS is particularly powerful for the over 75s; the
differences in scores amongst the over 75s, between those who have a CNS and
those who do not, is very substantial, and much more substantial than is the case
amongst the under 75s.
9
Assessment and Care Plans

The survey results indicate that the provision of assessment and care plans is not
universally delivered across Wales. Some Health Boards / Trust and hospitals are
performing significantly better than others in respect of this provision, but in some
tumour groups in different parts of Wales the "translation" of a discussion about
needs and concerns with the patient is hardly being mobilised at all to the actual
offer of a written care plan. Considerable effort needs to be made to implement the
care plan commitment in a consistent way, making it a reality for patients.
Patients with long term conditions

In the Wales 2013 CPES, there are statistically significant differences between
those patients with a long term condition (LTC) or conditions and those without
one, on 35 questions. In almost all cases the patients with at least one LTC were
less positive than those patients without an LTC.

In terms of specific long term conditions, the largest numbers of significant
differences were between those with a long-standing physical condition and those
without any co-morbidity at all. However, the largest scale differences on individual
questions were between those with a mental health or learning disability, and those
patients without any co-morbidity. This pattern is similar to that reported in other
cancer patient experience surveys.
Length of time since diagnosis

The Wales 2013 CPES results show that those patients who started cancer
treatment more than five years ago are less likely to be positive than those who
started treatment in the last year.

There are 5 questions in the survey where patients who began treatment more than
five years ago have significantly less positive views than more recently treated
patients. These issues relate to care planning, some information questions, and the
important provision of a Key Worker.
The impact of deprivation

The impact of deprivation on the Wales CPES has been measured using the Index
of Multiple Deprivation based on postcode analysis.

There are 17 questions on which there are significant differences between IMD
quintile 1 (the most deprived) and quintile 5 (the least deprived), with quintile 1
being the most positive on 9 questions and quintile 5 the most positive on 8
questions.

The pattern of difference between the extreme points of the deprivation scale
follows a similar pattern as in other cancer patient surveys, as on some issues the
most deprived are the most positive, and on some issues the least deprived are the 10
most positive.
Differences between age groups

Analysis of the Wales CPES by age shows findings rather different from those
found in age band analysis in other cancer surveys.

Statistically significant differences of view between patients of different ages were
found in only 4 questions and there was no real pattern to the findings.
Differences relating to gender

There are 19 questions on which there are significant differences between the
views of men and of women, with men being more positive on 12 of these questions
and women being more positive on 7 questions, for example on matters relating to
staff, privacy and being treated as a person and not a set of cancer symptoms. The
findings on gender differences are consistent with the findings of cancer surveys
elsewhere

Differences between the attitudes of men and women remain substantial even
when we remove those cancer groups that are wholly or almost wholly single
gender (breast, prostate and gynaecological), with men remaining more positive
than women overall.
Differences between Welsh and English speaking respondents

Analysis has been undertaken to assess whether there are differences of view
between those respondents who answered the survey in Welsh and in English, and
the broader group who indicated that their preference was for communication in
Welsh rather than English.

The results show clearly that respondents who indicated that their preferred
language of completion was Welsh were more positive about many aspects of
cancer care than patients who indicated that their communication preference was
English. In addition, those patients who completed the survey in Welsh were even
more positive than those who preferred communication in Welsh.
Effect of the size of the response group on results
Although the Wales CPES has surveyed all adult patients with a confirmed diagnosis of
cancer, and the survey has achieved an excellent response rate, it is likely that the
absolute size of the response group has affected finding some of the differences that are
seen in cancer surveys elsewhere with larger response groups. An example of this is that
the dataset when tested shows no statistically significant differences between White
patients and the small group of respondents from Black and Minority Ethnic groups, when
every other cancer patient survey, with larger response groups, has shown such
differences.
11
Conclusion
In this first cancer patient experience survey in Wales, covering all Health Boards / Trust
and all cancer types, it is clear that patients overall views of the service they receive and
the treatment they have are positive. However, there are many areas where specific
improvements need to be made.
The data from special analyses on demographic and other variables show that in many
cases there are considerable differences of view between patients from different social
groups, and between those with different cancers. There are also some important
differences in the quality of treatment and care as seen by patients in different Health
Boards/Trust and hospitals. Work must be undertaken to understand why this variation
occurs.
The survey results therefore gives clear indications to Health Boards / Trust, service
planners, cancer charities and to the Welsh Government, as to the priorities for continuing
quality improvement initiatives. The results also point to areas of policy which could be the
subject of further intervention and monitoring, such as assessing the importance of
complex pathways on patient experience, where these exist; the extent to which the
findings of peer review are being used; and the extent to which existing information
provision created by cancer charities and the NHS generally is helpful and is being used
by staff.
It is clear that from the results of the survey that the ambitions of the Wales Cancer
Delivery Plan need further mobilisation on such issues as the implementation of Key
Workers and the provision of written Assessment and Care Plans to patients. It is also
clear that the delivery of high-quality information to patients across Wales requires further
detailed attention.
Bespoke Health Board / Trust level reports will be published alongside this national
report, with performance benchmarked between Health Boards / Trust and, where data
allows, between tumour groups within Health Boards / Trust. Key information from these
reports will be available to the public via public websites.
12
3. Response rate & helpline calls
A total of 10,945 patients who had received treatment for cancer from 7 Health
Boards and 1 Trust were included in the sample for the Cancer Patient Experience
Survey. These patients fell into 13 different cancer groups.
Response rate
During the survey process Quality Health undertook Demographics Batch Service (DBS)
checks on patient records on 3 occasions to remove deceased patients from the samples:
before the first send out, before the first reminders were sent and before the second
reminders were sent. Health Boards / Trust in some cases also undertook their own
internal checks for deceased patients.
This procedure, undertaken centrally at Quality Health for the first time in 2012 on a
cancer survey, has had the positive effect of substantially reducing the numbers of
deceased patients who are sent questionnaires. A central procedure enables tighter
control on the existence and timing of DBS checks to be effected, with the positive
consequence that the number of deceased patients reported through the helpline dropped
substantially.
Deceased checks and de-duplication of samples locally and nationally took place on the
samples submitted by Health Boards / Trust before the initial survey send-out.
Patients were also removed from the samples arising from calls to the helpline and via
postal communications that were received during the fieldwork. These included additional
deceased patients, those who had moved and could not be traced and other ineligible
patients.
The response rate to the Cancer Patient Experience Survey in 2013 was 69% (7,352
completed questionnaires). This response rate indicates strong willingness by many
cancer patients to comment on the care and treatment received, their health status, and
symptoms they experienced. Response rates by Health Board / Trust are shown in the
table below.
13
HEALTH BOARD / TRUST
Abertawe Bro Morgannwg University Health
Board
Sample
size
Number of
respondents
Response
rate
2381
1539
67%
407
274
68%
Betsi Cadwaladr University Health Board
2569
1720
70%
Cardiff and Vale University Health Board
573
384
68%
Cwm Taf University Health Board
475
307
67%
1594
1069
69%
16
6
40%
2930
2053
73%
10945
7352
69%
Aneurin Bevan University Health Board
Hywel Dda University Health Board
Powys Teaching Health Board
Velindre NHS Trust
Total
Table 1 Response rate by Board/Trust
Helpline calls
Quality Health provides a dedicated survey helpline staffed by trained in-house operators.
557 calls were made to the helpline; these included calls which fell into the following
categories:

Patients calling for general advice about completing the questionnaire

Patients calling to say they were too ill or did not want to participate

Relatives calling to report deceased patients

Patients reported as having moved

Patients calling for help with translation facilities or requiring over-the-phone
completion
As soon as calls were received, the nature of the call and any required action was logged
on the database to ensure that, in particular, patients who were deceased or did not want
any further communication did not receive survey reminders. Patients who raised queries
about their health status were offered information about the Macmillan Cancer Support
website and helpline or referred to their originating Health Board / Trust if this was
appropriate.
Future research
The response rate to the survey (69%) provides further evidence that cancer patients are
willing to respond to NHS questionnaires in large numbers, in a way that patients in other
specialties or with different conditions are sometimes less willing to do. Patients were
asked in the survey if a further questionnaire could be sent to them in the future to ask
about their health and healthcare: 85% of respondents (6,073 patients) said yes, a further
questionnaire could be sent.
14
4. Patient demographics
The survey included all patients having treatment for cancer between 1 September
2012 and 31 March 2013 where this treatment was recorded by Health Boards / Trust
as falling within the first diagnosis field. Patients were placed into one of 13 cancer
groups using their ICD10 code and covered both inpatients and day case patients.
Cancer patients often make a number of visits to a hospital or hospitals for a variety of
treatments or consultations in a short period of time. To ensure that patients were not sent
more than one questionnaire, checks were undertaken on all Health Board / Trust
samples for the survey to ensure that patients appeared on the list only once. Further
checks were made between Health Boards / Trust to ensure that patients did not appear
on the lists of more than one Health Board / Trust. If patients were found on Health Board
/ Trust lists more than once then their most recent hospital episode was taken as the
episode to use in respect of the survey sample.
The ‘big 4’ cancers (breast, colorectal / lower gastrointestinal, lung and prostate)
accounted for 57% of all respondents. Breast cancer accounted for a larger proportion of
patients than did any other cancer group (23% of all respondents).
The table below shows the percentage and number of respondents by tumour group.
Tumour Group
Number of
respondents
Percentage
Breast
1,717
23%
Colorectal / lower gastrointestinal
1,112
15%
Lung
427
6%
Prostate
954
13%
‘Big 4’ combined
4,210
57%
Brain / central nervous system (CNS)
53
1%
Gynaecological
504
7%
Haematological
633
9%
Head and neck
332
5%
Sarcoma
64
1%
Skin
163
2%
Upper gastrointestinal
354
5%
Urological (excluding prostate)
787
11%
Other cancers
252
3%
Table 2 Tumour group by response
15
The tables below show the percentage and number of respondents by gender, age,
ethnicity, sexual orientation, long term condition and length of time since patients were
first treated for this cancer.
Gender of respondents
Number of
respondents
Percentage
Male
3,397
47%
Female
3,785
53%
Table 3 Respondents by gender
Age of respondents
Number of
respondents
Percentage
16-25 years of age
17
<1%
26-35 years of age
87
1%
36-50 years of age
484
7%
51-65 years of age
2,090
32%
66-75 years of age
2,348
36%
76+ years of age
1,550
24%
Table 4 Respondents by age group
Ethnicity of respondents
Number of
respondents
Percentage
White (British, Irish or other white)
7,137
99%
Asian or Asian British
19
<1%
Black or Black British
8
<1%
Mixed background
17
<1%
Chinese and other
9
<1%
Table 5 Respondents by ethnicity
Sexual orientation of respondents *
Number of
respondents
Percentage
Heterosexual
6,595
99%
Bisexual
19
<1%
Gay or lesbian
27
<1%
Other sexuality
30
<1%
Table 6 Respondents by sexuality
* 3% of patients said they preferred not to answer this question, and a further 6% of all respondents to the
survey did not answer the question at all.
16
Main employment status
Number of
respondents
Percentage
Full time employment
1,056
15%
Part time employment
497
7%
Homemaker
206
3%
Student (in education)
15
<1%
Retired
4,608
65%
Unemployed – and seeking work
36
<1%
Unemployed – unable to work for health reasons
494
7%
Other
174
2%
Table 7 Respondents by main employment status
Respondents with long term conditions *
Number of
respondents
Percentage
Deafness or severe hearing impairment
852
12%
Blindness or partially sighted
179
2%
A longstanding physical condition
1,291
18%
A learning disability
31
<1%
A mental health condition
187
3%
A long standing illness
1,023
14%
Table 8 Respondents with long term conditions
* 56% of patients said they did not have a long-standing condition other than cancer. The table shows the
percentage and number of patients saying they had one or more of each of the long-standing conditions
specified.
Length of time since respondents were first
treated for this cancer
Number of
respondents
Percentage
Less than 1 year
4,267
60%
1 to 5 years
2,211
31%
More than 5 years
575
8%
Table 9 Length of time since respondents first treated for this cancer
17
How respondents cancer has responded to
treatment
Number of
respondents
Percentage
Cancer has responded fully to treatment
3,223
48%
Cancer has been treated but is still present
1,520
23%
Cancer has not been treated at all
128
2%
Cancer has come back after it was originally
treated
355
5%
Original cancer responded but patient now has a
new cancer
232
3%
Patient is not certain what is happening with their
cancer
1,277
19%
Table 10 How cancer has responded to treatment
Preferred language for receiving information
and treatment
Number of
respondents
Percentage
Welsh
246
3%
English
6,829
96%
Other
15
<1%
Table 11 Respondents preferred language for receiving information and treatment
Whether respondents got the information they
needed in their preferred language
Number of
respondents
Percentage
Yes, completely
6,749
95%
Yes, to some extent
266
4%
No
76
1%
Table 12 Whether respondents got information in their preferred language
18
5. Section by section
This section of the report describes the results for each part of the questionnaire in
the order in which it was read by the patient. The survey order was designed to
reflect the patient’s journey through cancer treatment, starting with referral and
ending with care from the patient’s General Practice and lastly their overall rating of
NHS care.
The results from each question in the survey are described in the following sections. The
number of the question in the questionnaire is shown, and the text of the question is
displayed. The full survey results are set out in Appendix A.
There are 7 questions (3, 5, 10, 36, 40, 66 and 71) which are not scored. These questions
are information or routing questions e.g. question 5 which asks if patients have had tests.
For all other questions key scores have been calculated after removing any patients who
said that the question did not apply to them, who ticked ‘don’t know / can’t remember’ or
who did not answer at all.
The key score for each question is shown firstly as an overall percentage of all
respondents to the survey; this same key score is then used to highlight variations
between tumour groups. Where the key score has been constructed from more than one
response option to a particular question (e.g. patient saw their GP once; patient saw their
GP twice), then the response options that make up that key score are described.
On each question the range of scores from highest to lowest is reported to show the
variation between tumour groups and Boards/Trust.
For each question, significance tests have been used to establish whether particular
tumour groups have scores at variance from each other or whether individual
Boards/Trust2 have scores at variance from the all-Wales scores. The charts in this
section showing the key scores for each of the cancer groups or for the Boards/Trust are
only included where there is a statistically significant difference between one or more of
the tumour groups or the Boards and the all-Wales scores. The overall score for all
respondents (the national average) is shown as a red line.
Appendix A provides a full list of all questions and which tumour group or Board/Trust
responses are statistically significant from the all-Wales scores (shown in blue).3
2
All scores for Velindre NHS Trust in this section include both Velindre Hospital and Velindre Chemotherapy
Outreach Clinic respondents.
3
Because of the differential sample sizes from Boards and numbers of respondents on questions, in some
19
cases small percentage differences are statistically significant whilst in other cases they are not; this also
affects the overall number of questions which show significant differences for some tumour groups or
Boards. See Section 6 for a full description of survey methodology and analysis.
Seeing your GP
The early diagnosis of cancers is seen as a critical issue. The questions in this
section of the survey were designed to identify the view of patients about seeing
their GP prior to referral to hospital, the length of time that elapsed and changes to
their health status during the important assessment and referral period.
1. Number of times seen by GP
Before you were told you needed to go to hospital about cancer, how many times
did you see your GP (family doctor) about the health problem caused by cancer?
Overall findings
Of those patients who saw their GP before going to hospital, 73% said that they saw their
GP either once (53%) or twice (21%) before they were told they needed to go to hospital
about the health problem caused by cancer.
17% saw their GP 3 or 4 times, and 10% saw their GP 5 or more times. 21% said they did
not see their GP before going to hospital.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying they saw their GP only once or twice before being referred on to a cancer
specialist. Scores ranged from 91% (breast cancer) to 58% (brain / CNS cancer).
Saw GP no more than twice before referral to hospital
100%
91%
90%
84%
80%
72%
70%
60%
68%
76%
72%
68%
66%
65%
59%
58%
67%
61%
50%
40%
30%
20%
10%
0%
All
20
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying they saw their GP only once or twice before being referred
on to a cancer specialist. Scores in Health Boards / Trust ranged from 71% as the lowest
score to 75% as the highest Health Board / Trust score.
2. First appointment as soon as was necessary
How do you feel about the length of time you had to wait before your first
appointment with a hospital doctor?
Overall Findings
78% of patients in all cancer groups said they felt that they were seen as soon as they
thought was necessary: 12% felt they should have been seen a bit sooner and a further
10% felt they should have been seen a lot sooner.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were seen as soon as necessary. Scores in Health
Boards / Trust ranged from 73% as the lowest score to 85% as the highest Health Board /
Trust score.
Seen as soon as necessary
100%
90%
80%
85%
80%
78%
80%
78%
76%
73%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
21
3. Length of time before first seeing a hospital doctor
How long was it from the time you first thought something might be wrong with you
until you first saw a hospital doctor?
Overall Findings
73% of patients said that the gap between the time when they first thought something
might be wrong and when they first saw a hospital doctor was less than 3 months. 15%
said the gap was 3-6 months; 6% said 6-12 months and 4% said more than 12 months.
4. State of health whilst waiting for first appointment
Did your health get worse, get better or stay about the same while you were waiting
for your first appointment with a hospital doctor?
Overall Findings
79% of patients in all cancer groups said that their health got better (0.4%) or stayed
about the same (79%) during the time they were waiting for their first appointment with a
hospital doctor; 21% said their health got worse.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying their health got better or stayed about the same. Scores ranged from 92% (breast
cancer) to 60% (sarcoma).
Health got better or stayed about the same while waiting
100%
92%
90%
86%
90%
82%
80%
74%
76%
75%
74%
70%
70%
64%
62%
60%
62%
60%
50%
40%
30%
20%
10%
0%
All
22
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying their health got better or stayed about the same. Scores
in Health Boards / Trust ranged from 77% as the lowest score to 84% as the highest
Health Board / Trust score.
Health got better or stayed about the same while waiting
100%
90%
80%
80%
79%
81%
84%
80%
80%
Aneurin Bevan HB
Velindre NHST
77%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
All
23
Diagnostic Tests
This section describes the views of patients who had diagnostic tests on the
explanations and information given about those tests and test results.
5. Patients having tests
In the last 12 months, have you had diagnostic test(s) for cancer such as an
endoscopy, biopsy, mammogram, or scan at one of the hospitals named in the
covering letter?
Overall Findings
88% of patients overall said they had diagnostic tests for cancer such as an endoscopy,
biopsy, mammogram or scan.
6. Explanations of the purpose of tests
Beforehand, did a member of staff explain the purpose of the test(s)?
Overall Findings
Of those patients who said they needed an explanation, 83% said staff explained the
purpose of tests completely; a further 15% said the purpose was explained to some
extent. 2% of patients said the purpose was not explained but that they would have liked
an explanation.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying staff explained the purpose of tests completely. Scores in
Health Boards / Trust ranged from 78% as the lowest score to 86% as the highest Health
Board / Trust score.
24
Staff gave complete explanation of purpose of tests
100%
90%
84%
83%
82%
81%
86%
85%
78%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
7. Explanations of what would be done during tests
Beforehand, did a member of staff explain what would be done during the test
procedure(s)?
Overall Findings
Of those patients who said they needed an explanation, 87% said staff explained what
would be done during tests completely a further 12% said it was explained to some extent.
1% said it was not explained but that they would have liked an explanation.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying staff explained what would be done during tests
completely. Scores in Health Boards / Trust ranged from 85% as the lowest score to 89%
as the highest Health Board / Trust score.
25
Staff explained completely what would be done during tests
100%
90%
87%
85%
86%
86%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
89%
89%
86%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
8. Given written information about tests
Beforehand, were you given written information about your test(s)?
Overall Findings
Of those patients who said they needed written information about their tests, 84% said
they were given written information that was easy to understand; 4% were given
information but it was difficult to understand. 12% said they were not given written
information but would have liked some.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given written information that was easy to
understand. Scores in Health Boards / Trust ranged from 79% as the lowest score to 88%
as the highest Health Board / Trust score.
26
Given easy to understand written information about tests
100%
90%
87%
86%
83%
88%
80%
85%
79%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
9. Explanations of test results
Were the results of the test(s) explained in a way you could understand?
Overall Findings
Of those patients who said they needed an explanation, 79% said they received a
completely understandable explanation of their test results; a further 18% said the
explanation was only understandable to some extent. 2% said the results were not
explained but they would have liked an explanation.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they had a completely understandable explanation of
their test results. Scores in Health Boards / Trust ranged from 76% as the lowest score to
85% as the highest Health Board / Trust score.
27
Test results explained completely
100%
90%
83%
80%
79%
77%
85%
81%
79%
76%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
28
Finding out what was wrong
This section describes who first told the patient that they had cancer and what they
felt about the way they were told and the information given to them.
10. Who first told the patient they had cancer
Who first told you that you had cancer?
Overall Findings
83% of patients said they were first told they had cancer by a hospital doctor; 5% said
they were told by a nurse, 7% were told by their GP and 4% by another health
professional. 2% said that a friend or relative told them or that they worked it out for
themselves.
11. Having a family member or friend present
When you were first told that you had cancer, had you been told you could bring a
family member or friend with you?
Overall Findings
Of those patients who felt it necessary, 70% overall said they were told they could bring a
family member or friend with them; 30% were not told. 1% said they were told they had
cancer by phone or letter.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were told they could bring a family member or friend
with them. Scores in Health Boards / Trust ranged from 66% as the lowest score to 75%
as the highest Health Board / Trust score.
29
Told could bring family member or friend with them
100%
90%
80%
75%
71%
70%
70%
70%
67%
66%
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
68%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
12. Patients feelings about the way they were told
How do you feel about the way you were told you had cancer?
Overall Findings
Overall, 84% of patients felt that the way they were told they had cancer was done
sensitively; 11% felt it could have been done a bit more sensitively and a further 5% said
it could have been done a lot more sensitively.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying the way they were told they had cancer was done
sensitively. Scores in Health Boards / Trust ranged from 83% as the lowest score to 87%
as the highest Health Board / Trust score.
30
13. Patients understanding explanations of what was wrong
Did you understand the explanation of what was wrong with you?
Overall Findings
75% of patients said that they completely understood the explanation of what was wrong
with them; 23% said that they understood some of it. 2% said that they did not understand
the explanation they were given.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying they completely understood the explanation that they received of what was wrong
with them. Scores ranged from 81% (breast cancer) to 56% (haematological cancer).
Completely understood explanation of what was wrong
100%
90%
81%
80%
78%
80%
81%
77%
75%
75%
73%
68%
70%
69%
63%
61%
60%
56%
50%
40%
30%
20%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they completely understood the explanation that they
received of what was wrong with them. Scores in Health Boards / Trust ranged from 73%
as the lowest score to 78% as the highest Health Board / Trust score.
31
Completely understood explanation of what was wrong
100%
90%
80%
78%
78%
74%
75%
73%
75%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
73%
70%
60%
50%
40%
30%
20%
10%
0%
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
14. Written information about the type of cancer
When you were told you had cancer, were you given written information about the
type of cancer you had?
Overall Findings
Of those patients who said they needed it, 62% overall said they were given written
information about the type of cancer that they had and that it was easy to understand; a
further 6% were given written information but said it was difficult to understand. 32% were
not given written information.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying they were given written information about the type of cancer that they had and that
it was easy to understand. Scores ranged from 78% (prostate cancer) to 32% (brain/CNS
cancer).
32
Given easy to understand written information about type of cancer
100%
90%
78%
80%
70%
69%
66%
62%
60%
57%
60%
50%
49%
50%
40%
57%
48%
48%
34%
32%
30%
20%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given written information about the type of
cancer that they had and that it was easy to understand. Scores in Health Boards / Trust
ranged from 59% as the lowest score to 65% as the highest Health Board / Trust score.
Given easy to understand written information about type of cancer
100%
90%
80%
70%
64%
61%
60%
65%
62%
59%
59%
62%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
33
Deciding the best treatment
This section describes the patients’ views about the choice and information they
were given, and their involvement in decisions about treatment.
15. Choice about types of treatment
Before your cancer treatment started, were you given a choice of different types of
treatment?
Overall Findings
59% of patients overall said only one type of treatment was suitable for them; of the
remaining patients, 84% said they were given a choice of different types of treatment;
16% said they were not given a choice but would have liked one.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given a choice of different types of treatment.
Scores in Health Boards / Trust ranged from 81% as the lowest score to 88% as the
highest Health Board / Trust score.
Given choice of different types of treatment
100%
88%
90%
83%
81%
81%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
83%
85%
88%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
34
16. Decisions about best treatment
Do you think your views were taken into account when the team of doctors and
nurses caring for you were discussing which treatment you should have?
Overall Findings
8% of patients said they did not know their treatment was being discussed by a team of
doctors and nurses and a further 6% said they were not sure or could not remember.
71% of those patients who knew said their views were definitely taken into account; 23%
said they were to some extent. 7% said their views were not taken into account.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying their views were definitely taken into account. Scores in
Health Boards / Trust ranged from 67% as the lowest score to 75% as the highest Health
Board / Trust score.
Views definitely taken into account by team discussing treatment
100%
90%
80%
75%
74%
70%
70%
67%
68%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
74%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
35
17. Explanations about side effects of treatment
Were the possible side effects of treatment(s) explained in a way you could
understand?
Overall Findings
Of those patients saying they needed an explanation, 75% said possible side effects of
treatment were definitely explained to them in a way they could understand; a further 20%
said the explanation was understandable to some extent. 5% said side effects were not
explained to them.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying possible side effects of treatment were definitely
explained to them. Scores in Health Boards / Trust ranged from 71% as the lowest score
to 80% as the highest Health Board / Trust score.
Side effects of treatment definitely explained
100%
90%
80%
80%
74%
71%
72%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
74%
71%
73%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
36
18. Written information about side effects of treatment
Before you started your treatment, were you given written information about the
side effects of treatment(s)?
Overall Findings
82% of those patients who felt they needed it said that they had received written
information about the side effects of treatment and that it was easy to understand; a
further 6% were given written information but it was difficult to understand. 13% of
patients said they were not given written information about side effects.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they had received written information about the side
effects of treatment. Scores in Health Boards / Trust ranged from 68% as the lowest score
to 89% as the highest Health Board / Trust score.
Given easy to understand written information about side effects
100%
89%
90%
81%
80%
79%
78%
77%
77%
68%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
37
19. Longer term side effects
Before you started your treatment, were you also told about any side effects of the
treatment that could affect you in the future rather than straight away?
Overall Findings
55% of those patients who needed to be told said they were definitely told about longer
term side effects; 25% said they were to some extent. 20% said future side effects were
not explained to them. 7% said they did not need an explanation.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying they were definitely told about future side effects of treatment. Scores ranged from
65% (prostate cancer) to 44% (skin cancer).
Told about possible future side effects of treatment
100%
90%
80%
70%
60%
65%
58%
56%
64%
55%
52%
52%
50%
55%
58%
49%
44%
45%
46%
40%
30%
20%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were definitely told about future side effects of
treatment. Scores in Health Boards / Trust ranged from 51% as the lowest score to 61%
as the highest Health Board / Trust score.
38
Told about possible future side effects of treatment
100%
90%
80%
70%
61%
58%
60%
53%
51%
52%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
54%
53%
Cardiff and Vale UHB
Cwm Taf HB
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Aneurin Bevan HB
Velindre NHST
All
20. Patient involvement in decisions about care and treatment
Were you involved as much as you wanted to be in decisions about your care and
treatment?
Overall Findings
71% of patients said that they were definitely involved as much as they wanted to be in
decisions about their care and treatment; 23% said they were involved to some extent. 6%
said no but they would have liked to have been more involved.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were definitely involved in decisions about care and
treatment. Scores in Health Boards / Trust ranged from 68% as the lowest score to 76%
as the highest Health Board / Trust score.
39
Definitely involved in decisions about care and treatment
100%
90%
80%
76%
71%
70%
69%
68%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
70%
73%
73%
Aneurin Bevan HB
Velindre NHST
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Cwm Taf HB
All
40
Clinical Nurse Specialist / Key Worker
This section describes the patients’ views about Clinical Nurse Specialists and Key
Workers, their availability to patients, and information given by them.
21. Given the name of a Clinical Nurse Specialist
Were you given the name of a Clinical Nurse Specialist who would be in charge of
your care?
Overall Findings
88% of patients overall said that they had been given the name of a Clinical Nurse
Specialist; 12% were not given the name of a Clinical Nurse Specialist.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given the name of a Clinical Nurse Specialist.
Scores in Health Boards / Trust ranged from 84% as the lowest score to 93% as the
highest Health Board / Trust score.
Given name of CNS in charge of care
100%
93%
90%
88%
85%
85%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
91%
91%
Aneurin Bevan HB
Velindre NHST
84%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
All
Cwm Taf HB
41
22. Ease of contacting the Clinical Nurse Specialist
How easy is it for you to contact your Clinical Nurse Specialist?
Overall Findings
Of those patients who had tried to contact their Clinical Nurse Specialist, 78% said that it
was easy to contact them; 19% said it was sometimes easy, sometimes difficult; and 3%
said it was difficult.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying it was easy to contact their Clinical Nurse Specialist.
Scores in Health Boards / Trust ranged from 76% as the lowest score to 83% as the
highest Health Board / Trust score.
Easy to contact CNS
100%
90%
81%
80%
83%
79%
78%
76%
78%
77%
Aneurin Bevan HB
Velindre NHST
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
All
42
23. Clinical Nurse Specialist listening carefully
The last time you spoke to your Clinical Nurse Specialist, did she/he listen carefully
to you?
Overall Findings
92% of patients overall said that the Clinical Nurse Specialist definitely listened carefully
to them when they last spoke to them; 7% said they listened carefully to some extent. 1%
said they did not listen carefully.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying the Clinical Nurse Specialist definitely listened carefully.
Scores in Health Boards / Trust ranged from 90% as the lowest score to 93% as the
highest Health Board / Trust score.
24. Asking the Clinical Nurse Specialist important questions
When you have important questions to ask your Clinical Nurse Specialist, how often
do you get answers you can understand?
Overall Findings
Of those patients who said that they asked the Clinical Nurse Specialist questions, 92%
said that they got understandable answers all or most of the time, 7% said they did so
only some of the time and 1% said they rarely or never did.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they got understandable answers all or most of the time
from the Clinical Nurse Specialist. Scores in Health Boards / Trust ranged from 90% as
the lowest score to 94% as the highest Health Board / Trust score.
43
Got understandable answers from CNS all / most of time
100%
94%
91%
90%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
90%
93%
92%
90%
92%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
25. Information about Key Workers
Were you given the name and contact details of your Key Worker?
Overall Findings
66% of patients who could remember were given contact details of their Key Worker (36%
who was also their CNS; 30% who was not their CNS). 34% were not given details of a
Key Worker. 11% overall said they did not know or could not remember.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying they were given the name of a Key Worker. Scores ranged from 80% (lung cancer)
to 39% (urological cancer).
44
Given name and contact details for key worker
100%
90%
80%
80%
78%
79%
74%
72%
69%
70%
66%
62%
60%
54%
53%
55%
47%
50%
39%
40%
30%
20%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given the name of a Key Worker. Scores in
Health Boards / Trust ranged from 58% as the lowest score to 75% as the highest Health
Board / Trust score.
Given name and contact details for key worker
100%
90%
80%
72%
75%
74%
Aneurin Bevan HB
Velindre NHST
70%
63%
58%
60%
61%
59%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
45
26. Ease of contacting the Key Worker
How easy was it for you to contact your Key Worker?
Overall Findings
82% of patients who had tried to contact their Key Worker said it was easy to contact him
or her; 16% said it was sometimes easy and sometimes difficult; 2% had found it difficult.
10% had not tried to contact their Key Worker.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying it was easy to contact their Key Worker. Scores in Health
Boards / Trust ranged from 78% as the lowest score to 88% as the highest Health Board /
Trust score.
27. Patient listened to by Key Worker
The last time you spoke to your Key Worker, did she/he listen carefully to you?
Overall Findings
92% of patients said the Key Worker had definitely listened to them; 6% said she/he had
listened to some extent; 1% said they had not been listened to.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying their Key Worker definitely listened carefully. Scores in
Health Boards / Trust ranged from 88% as the lowest score to 94% as the highest Health
Board / Trust score.
46
Key worker definitely listened carefully
100%
94%
93%
94%
91%
91%
90%
90%
84%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
28. Asking the Key Worker important questions
When you have important questions to ask your Key Worker, how often do you get
answers you can understand?
Overall Findings
91% of patients of those who had asked questions of their Key Worker said they got
answers they could understand all or most of the time, 8% said they did so only some of
the time and 1% said they rarely or never did.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they got understandable answers all or most of the time
from their Key Worker. Scores in Health Boards / Trust ranged from 79% as the lowest
score to 94% as the highest Health Board / Trust score.
47
Got understandable answers from key worker all / most of time
100%
90%
94%
92%
93%
90%
90%
84%
79%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
29. Discussing care plans
Were you offered the opportunity to discuss your needs and concerns in order to
put together your care plan?
Overall Findings
58% of patients said they had been offered the opportunity to discuss their needs and
concerns in order to put together their care plan; 42% had not been offered this
opportunity. 15% didn’t know or couldn’t remember.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying that they had been offered the opportunity to discuss their needs and concerns in
order to put together their care plan. Scores ranged from 80% (brain / CNS cancer) to
37% (urological cancer).
48
Offered opportunity to discuss needs for care plan
100%
90%
80%
80%
70%
66%
64%
67%
65%
62%
60%
56%
55%
55%
51%
50%
50%
41%
37%
40%
30%
20%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were offered the opportunity to discuss their needs
and concerns. Scores in Health Boards / Trust ranged from 49% as the lowest score to
67% as the highest Health Board / Trust score.
Patient able to discuss worries/fears with staff as much as wanted
100%
90%
80%
70%
69%
66%
62%
65%
60%
58%
60%
55%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
49
30. Written care plans
Have you been offered a written care plan?
Overall Findings
22% of patients said that they had been offered a written assessment or care plan; 78%
said they had not and a further 15% said they didn’t know or couldn’t remember.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying that they had been offered a care plan. Scores ranged from 30% (lung cancer) to
10% (sarcoma).
Patient offered written care plan
100%
90%
80%
70%
60%
50%
40%
30%
20%
28%
30%
25%
24%
19%
25%
26%
24%
18%
15%
10%
10%
17%
11%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were offered a written care plan. Scores in Health
Boards / Trust ranged from 20% as the lowest score to 25% as the highest Health Board /
Trust score.
50
Patient offered written care plan
100%
90%
80%
70%
60%
50%
40%
30%
25%
24%
20%
21%
20%
20%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
20%
22%
10%
0%
Betsi Cadwaladr UHB
Aneurin Bevan HB
Velindre NHST
All
51
Support for patients
This section describes the information given to patients about support groups,
financial help and research.
31. Information about support groups
Did hospital staff give you information about emotional support, such as support or
self-help groups for people with cancer?
Overall Findings
Of those patients who said it was necessary, 77% reported having been given information
about support or self-help groups for people with cancer by hospital staff (69% yes, 8%
yes, but would have liked more). 23% said they did not get any information but would
have liked some.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying positively that they had been given information about support or self-help groups.
Scores ranged from 77% (breast cancer) to 46% (urological cancer).
Patients who needed it given information about emotional support
100%
90%
80%
70%
77%
67%
74%
71%
67%
69%
65%
71%
70%
65%
60%
63%
53%
50%
46%
40%
30%
20%
10%
0%
All
52
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they had been given information about support or selfhelp groups. Scores in Health Boards / Trust ranged from 58% as the lowest score to 77%
as the highest Health Board / Trust score.
Patients who needed it given information about emotional support
100%
90%
80%
70%
77%
75%
68%
63%
62%
61%
58%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
32. Impact of cancer on work or education
Did hospital staff discuss with you or give you information about the impact cancer
could have on your work life or education?
Overall Findings
Of those patients who said it was necessary, 68% said they had discussed or been given
information about the impact of cancer on work or education; 32% said no, but they would
have liked this. 49% said this was not necessary or relevant to them.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
53
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they had a discussion or were given information about
the impact of cancer. Scores in Health Boards / Trust ranged from 56% as the lowest
score to 74% as the highest Health Board / Trust score.
Staff discussed impact on work or education
100%
90%
80%
70%
71%
69%
70%
74%
64%
60%
60%
56%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
33. Information about financial help
Did hospital staff give you information about how to get financial help or any
benefits you might be entitled to?
Overall Findings
Of those patients who said it was necessary, 51% said they had been given information
about how to get financial help or benefits by hospital staff (44% yes, 7% yes, but would
have liked more). 49% said they did not get any information but would have liked some.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
positively saying they had been given information about how to get financial help or
benefits. Scores ranged from 62% (brain / CNS cancer) to 23% (urological cancer).
54
Given information on financial help/benefits by staff
100%
90%
80%
70%
62%
62%
60%
50%
46%
50%
46%
44%
45%
50%
47%
45%
40%
32%
29%
30%
23%
20%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they had been given information about how to get
financial help or benefits. Scores in Health Boards / Trust ranged from 28% as the lowest
score to 53% as the highest Health Board / Trust score.
Given information on financial help/benefits by staff
100%
90%
80%
70%
60%
53%
52%
50%
43%
40%
42%
34%
31%
28%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
55
34. Taking part in cancer research
Since your diagnosis, has anyone discussed with you whether you would like to
take part in cancer research?
Overall Findings
29% of patients said that taking part in research had been discussed with them; 71% said
it had not.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying that taking part in research had been discussed with them. Scores ranged from
38% (breast cancer) to 10% (skin cancer).
Taking part in cancer research discussed with patient
100%
90%
80%
70%
60%
50%
40%
38%
31%
30%
31%
32%
27%
30%
27%
26%
26%
20%
19%
20%
15%
10%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying taking part in cancer research was discussed with them.
Scores in Health Boards / Trust ranged from 18% as the lowest score to 38% as the
highest Health Board / Trust score.
56
Taking part in cancer research discussed with patient
100%
90%
80%
70%
60%
50%
40%
30%
38%
35%
25%
26%
24%
25%
18%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
35. Did those asked take part in cancer research
If yes, did you then go on to take part in cancer research?
Overall Findings
64% of those patients who said they were asked, said they went on to take part in cancer
research; 36% did not.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they went on to take part in research. Scores in Health
Boards / Trust ranged from 45% as the lowest score to 83% as the highest Health Board /
Trust score.
57
Went on to take part in research
100%
90%
83%
80%
70%
70%
65%
66%
62%
62%
60%
50%
45%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
58
Operations
This section describes the views of patients’ having operations about changes to
admission dates, and the explanations and information given to them about their
operation.
36. Patients having operations
During the last 12 months, have you had an operation (such as removal of a tumour
or lump) at one of the hospitals named in the covering letter?
Overall Findings
54% of patients said that they had had an operation such as removal of a tumour or lump
during the last 12 months.
37. Explanations of what would be done during the operation
Before you had your operation, did a member of staff explain what would be done
during the operation?
Overall Findings
Of those patients who said they needed an explanation of what would be done during
their operation, 87% said a member of staff explained completely; a further 12% said staff
explained to some extent. 2% said staff did not explain but that they would have liked an
explanation.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying a member of staff explained completely. Scores in Health
Boards / Trust ranged from 86% as the lowest score to 89% as the highest Health Board /
Trust score.
59
38. Written information about the operation
Beforehand, were you given written information about your operation?
Overall Findings
70% of patients overall said they were given written information about their operation and
that it was easy to understand; 4% were given written information but said it was difficult
to understand. 26% said they were not given written information.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given easy to understand written information.
Scores in Health Boards / Trust ranged from 62% as the lowest score to 77% as the
highest Health Board / Trust score.
Given easy to understand written information about operation
100%
90%
80%
77%
70%
72%
72%
Cardiff and Vale UHB
Cwm Taf HB
74%
71%
66%
62%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Aneurin Bevan HB
Velindre NHST
All
60
39. Explanations after the operation
After the operation, did a member of staff explain how it had gone in a way you
could understand?
Overall Findings
Of those patients who said they needed an explanation, 78% overall said they had
received a completely understandable explanation of how the operation had gone from a
member of staff; 17% said staff had explained to some extent. 5% did not get an
explanation but would have liked one.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying they had received a completely understandable explanation
of how the operation had gone. Scores in Health Boards / Trust ranged from 72% as the
lowest score to 80% as the highest Health Board / Trust score.
61
Hospital doctors
This section describes patients’ views about information from hospital doctors,
confidence and Health Board / Trust in them by patients, and on patients’ views
about doctors’ knowledge and attitude.
The questions in this section were aimed at patients who had had an operation or stayed
overnight in hospital for cancer care not day case or outpatients.
40. Patients having operations or staying overnight
During the last 12 months, have you had an operation or stayed overnight for cancer
care at one of the hospitals named in the covering letter?
Overall Findings
60% of patients said they had had an operation or stayed overnight for cancer care during
the last 12 months.
41. Talking to doctors
During your treatment, were you able to talk to your doctor as often as you would
like?
Overall Findings
54% of those patients who needed to talk to a doctor during their treatment said they were
able to talk to one all or most of the time; 37% said they could talk to one some of the
time. 9% were rarely or never able to talk to a doctor.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients who needed to talk to a doctor during their treatment who said
they were able to talk to one all or most of the time. Scores in Health Boards / Trust
ranged from 48% as the lowest score to 60% as the highest Health Board / Trust score.
62
Able to talk to doctor all or most of the time
100%
90%
80%
70%
60%
60%
54%
55%
55%
52%
51%
48%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
42. Asking doctors important questions
When you had important questions to ask a doctor, how often did you get answers
that you could understand?
Overall Findings
Of those patients who had important questions to ask doctors, 80% said doctors gave
them answers they could understand all or most of the time; 17% said the answers were
understandable only some of the time and a further 3% said they rarely or never got
answers they could understand.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying doctors gave them answers they could understand. Scores in
Health Boards / Trust ranged from 78% as the lowest score to 82% as the highest Health
Board / Trust score.
63
43. Confidence and trust in doctors
Did you have confidence and trust in the doctors treating you?
Overall Findings
87% of patients said they had confidence and trust in all of the doctors treating them; 13%
said they had confidence and trust in some of them. Less than 1% of patients said they
had confidence and trust in none of them.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they had confidence and trust in all of the doctors.
Scores in Health Boards / Trust ranged from 84% as the lowest score to 91% as the
highest Health Board / Trust score.
Confidence and trust in all doctors
100%
91%
90%
87%
84%
86%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
87%
87%
Cardiff and Vale UHB
Cwm Taf HB
87%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Aneurin Bevan HB
Velindre NHST
All
64
44. Talking in front of patients
Did doctors talk in front of you as if you weren’t there?
Overall Findings
84% of patients said doctors did not talk in front of them as if they were not there. 13%
said that they sometimes did and a further 4% said that they often did.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying doctors did not talk in front of them as if they were not there.
Scores in Health Boards / Trust ranged from 81% as the lowest score to 88% as the
highest Health Board / Trust score.
45. Family able to talk to doctor
If your family or someone else close to you wanted to talk to a doctor, did they have
enough opportunity to do so?
Overall Findings
Of those patients saying they had family or someone close to them who might want to talk
to a doctor, 61% said their family or someone close to them definitely had enough
opportunity to do so; a further 30% said they did so to some extent. 8% said they did not
have enough opportunity to talk to a doctor.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying their family or someone close to them definitely had enough
opportunity to talk to a doctor. Scores in Health Boards / Trust ranged from 58% as the
lowest score to 63% as the highest Health Board / Trust score.
65
Ward nurses
This section describes patients’ views about information from ward nurses,
confidence and Health Board / Trust in nurses, nurses’ attitude, and levels of
nursing care on hospital wards.
The questions in this section were targeted at patients who had had an operation or
stayed overnight in hospital for cancer care and not day case or outpatients who did not
stay overnight.
46. Understanding ward nurses answers to important questions
When you had important questions to ask a ward nurse, how often did you get
answers you could understand?
Overall Findings
Of those patients who had important questions to ask a ward nurse, 75% overall said
nurses gave them answers they could understand all or most of the time; 21% said they
gave understandable answers some of the time and a further 4% said they rarely or never
got answers they could understand.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying nurses gave them answers they could understand all or
most of the time. Scores in Health Boards / Trust ranged from 69% as the lowest score to
79% as the highest Health Board / Trust score.
66
Got understandable answers from nurses all or most of time
100%
90%
80%
78%
79%
77%
77%
69%
70%
71%
70%
Cwm Taf HB
Aneurin Bevan HB
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Velindre NHST
All
47. Confidence and trust in ward nurses
Did you have confidence and trust in the ward nurses treating you?
Overall Findings
73% of patients said they had confidence and trust in all the ward nurses treating them;
26% said they had confidence and trust in some of them and 1% said they had confidence
and trust in none of them.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they had confidence and trust in all of the ward nurses.
Scores in Health Boards / Trust ranged from 69% as the lowest score to 79% as the
highest Health Board / Trust score.
67
Had confidence and trust in all the ward nurses
100%
90%
80%
79%
76%
73%
71%
69%
70%
74%
69%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
48. Talking in front of patients
Did ward nurses talk in front of you as if you weren’t there?
Overall Findings
86% of patients said nurses did not talk in front of them as if they were not there; 11%
said that they sometimes did and a further 3% said they often did.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying nurses did not talk in front of them as if they were not
there. Scores in Health Boards / Trust ranged from 84% as the lowest score to 88% as the
highest Health Board / Trust score.
68
Nurses did not talk in front of patients as if they were not there
100%
90%
88%
88%
84%
84%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
86%
87%
Cwm Taf HB
Aneurin Bevan HB
85%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Velindre NHST
All
49. Enough nurses on duty
In your opinion, were there enough nurses on duty to care for you in hospital?
Overall Findings
Overall, 60% of patients said there were always or nearly always enough nurses on duty
to care for them in hospital; 29% said that there were sometimes enough on duty and a
further 11% said there were rarely or never enough on duty.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying there were always or nearly always enough nurses on
duty. Scores in Health Boards / Trust ranged from 53% as the lowest score to 65% as the
highest Health Board / Trust score.
69
Always / nearly always enough nurses on duty
100%
90%
80%
70%
62%
65%
64%
62%
61%
60%
54%
53%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
70
Hospital care and treatment
This section describes patients’ views about missing or conflicting information,
privacy, respect and dignity, and pain control.
The questions in this section were targeted at patients who had had an operation or
stayed overnight in hospital for cancer care and not day case or outpatients who did not
stay overnight.
50. Not being told things
While you were in hospital did you ever think that the doctors or nurses were
deliberately not telling you certain things that you wanted to know?
Overall Findings
89% of patients said that they never thought that doctors or nurses were deliberately not
telling them certain things that they wanted to know; 10% said this only happened once
(2%) or sometimes (8%) and a further 1% thought this happened often.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying that they never thought that doctors or nurses were
deliberately not telling them certain things that they wanted to know. Scores in Health
Boards / Trust ranged from 87% as the lowest score to 91% as the highest Health Board /
Trust score.
71
Never thought staff were deliberately not telling them things
100%
91%
91%
87%
88%
87%
87%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
90%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Aneurin Bevan HB
Velindre NHST
All
51. Conflicting information
While you were in hospital, did it ever happen that one doctor or nurse said one
thing about your condition or treatment, and another said something different?
Overall Findings
84% of patients said that it was never the case that one doctor or nurse said one thing
about their condition or treatment and another said something different; 6% said this
happened only once, 9% said it happened sometimes and 1% said it happened often.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying it was never the case that one doctor or nurse said one thing
about their condition or treatment and another said something different. Scores in Health
Boards / Trust ranged from 82% as the lowest score to 86% as the highest Health Board /
Trust score.
72
52. What name patients preferred to be called by
While you were in hospital did the doctors and nurses ask you what name you
prefer to be called by?
Overall Findings
62% of patients said all of the doctors and nurses asked them what they wanted to be
called; 20% said that only some of them did and 18% said that none of them did.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying all of the doctors and nurses asked them what they
wanted to be called. Scores in Health Boards / Trust ranged from 54% as the lowest score
to 68% as the highest Health Board / Trust score.
All staff asked patient what name they preferred to be called by
100%
90%
80%
70%
66%
68%
61%
59%
60%
58%
60%
54%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
73
53. Privacy discussing condition or treatment
Were you given enough privacy when discussing your condition or treatment?
Overall Findings
83% of patients overall said that they always had enough privacy when discussing their
condition or treatment; a further 13% said they sometimes did. 4% said they did not have
enough privacy.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying they always had enough privacy. Scores in Health Boards /
Trust ranged from 80% as the lowest score to 86% as the highest Health Board / Trust
score.
54. Privacy when being examined or treated
Were you given enough privacy when being examined or treated?
Overall Findings
94% of patients overall said that they always had enough privacy when being examined or
treated; a further 5% said they sometimes did. 1% said they did not have enough privacy.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they always had enough privacy. Scores in Health
Boards / Trust ranged from 89% as the lowest score to 95% as the highest Health Board /
Trust score.
74
Always enough privacy when examined or treated
100%
94%
94%
94%
93%
95%
94%
89%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
55. Discussing worries and fears
Were you able to discuss any worries or fears with staff during your hospital visit?
Overall Findings
17% of patients said they did not have any worries or fears. Of those patients that did,
63% said they were able to discuss them as much as they wanted; 22% said they could
most of the time and 11% said they could some of the time. 4% said they could not but
would have liked to.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were able to discuss worries and fears as much as
they wanted. Scores in Health Boards / Trust ranged from 55% as the lowest score to
69% as the highest Health Board / Trust score.
75
Patient able to discuss worries/fears with staff as much as wanted
100%
90%
80%
70%
69%
66%
65%
62%
60%
58%
60%
55%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
56. Control of Pain
Do you think the hospital staff did everything they could to help control your pain?
Overall Findings
86% of those patients saying they had pain said that staff did everything they could to
help control it all of the time; 13% said they did so some of the time. 1% said they did not
do everything they could.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying staff did everything they could to help control their pain.
Scores in Health Boards / Trust ranged from 83% as the lowest score to 88% as the
highest Health Board / Trust score.
76
57. Treated with respect and dignity
Were you treated with respect and dignity by the doctors and nurses and other
hospital staff?
Overall Findings
85% of patients overall said that they were always treated with respect and dignity by staff
and a further 13% said they were most of the time. 3% said they were treated with respect
and dignity some of the time (2.4%) or never were (0.2%).
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were always treated with respect and dignity.
Scores in Health Boards / Trust ranged from 81% as the lowest score to 89% as the
highest Health Board / Trust score.
Treated with respect and dignity by hospital staff
100%
90%
87%
89%
85%
84%
82%
85%
81%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
— All
77
Information before leaving and home support
This section describes the patients’ views about various elements of information
given to them before they left hospital and levels of home support given.
The questions in this section were targeted at patients who had had an operation or
stayed overnight in hospital for cancer care and not day case or outpatients who did not
stay overnight.
58. Written information about what should or should not be done
Were you given clear written information about what you should or should not do
after leaving hospital?
Overall Findings
81% of those patients needing it said that they were given clear written information about
what they should or should not do after leaving hospital; 19% said they were not given
information.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given written information about what they
should or should not do. Scores in Health Boards / Trust ranged from 75% as the lowest
score to 87% as the highest Health Board / Trust score.
78
Given clear written information about what should/should not do
100%
87%
90%
84%
82%
80%
80%
85%
75%
75%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
59. Told who to contact if worried
Did hospital staff tell you who to contact if you were worried about your condition
or treatment after you left hospital?
Overall Findings
92% of patients overall said that hospital staff told them who to contact if they felt worried
about their condition or treatment after leaving hospital; 8% said they were not told.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying that hospital staff told them who to contact if they felt
worried about their condition or treatment. Scores in Health Boards / Trust ranged from
86% as the lowest score to 96% as the highest Health Board / Trust score.
79
Told who to contact if worried after leaving hospital
100%
96%
93%
90%
90%
94%
90%
89%
86%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
60. Information for families
Did the doctors or nurses give your family or someone close to you all the
information they needed to help care for you at home?
Overall Findings
Of those patients with family or someone close to them wanting information, 57% said that
their family or someone close to them definitely received all the information they needed
to help care for them at home; 23% said they did so to some extent. 20% said their family
did not get all the information they needed.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying that their family or someone close to them definitely
received all the information they needed. Scores in Health Boards / Trust ranged from
52% as the lowest score to 61% as the highest Health Board / Trust score.
80
Staff definitely gave family all information needed
100%
90%
80%
70%
61%
60%
53%
52%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
55%
61%
61%
Aneurin Bevan HB
Velindre NHST
53%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Cwm Taf HB
All
61. Arranging Home support
After leaving hospital, were you given enough care and help from health or social
services (For example, district nurses, home helps or physiotherapists?
Overall Findings
Of those patients who said they needed it, 59% said they were definitely given enough
care and help from health or social services after leaving hospital; 20% said they were to
some extent. 21% said they did not get enough care and help. 38% of patients overall
said that they did not need help from health or social services.
Findings by Tumour Group
There was a significant variation between tumour groups in the proportion of patients
saying they were definitely given enough care and help from health or social services.
Scores ranged from 67% (colorectal/lower gastrointestinal cancer) to 42% (prostate
cancer).
81
Definitely given enough care/help from health or social services
100%
90%
80%
67%
70%
57%
60%
67%
67%
62%
56%
63%
59%
58%
53%
54%
46%
50%
42%
40%
30%
20%
10%
0%
All
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were definitely given enough care and help from
health or social services. Scores in Health Boards / Trust ranged from 52% as the lowest
score to 68% as the highest Health Board / Trust score.
Definitely given enough care/help from health or social services
100%
90%
80%
68%
70%
62%
60%
62%
61%
61%
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
59%
52%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
82
All
Day / outpatient care
This section describes the views of day case and outpatients about side effects of
radiotherapy and chemotherapy, pain and emotional support.
62. Side effects of radiotherapy
Did hospital staff do everything possible to control the side effects of radiotherapy?
Overall Findings
49% of patients said they had not had any radiotherapy and 7% of patients who had
radiotherapy said they had not had any side effects.
79% of patients having radiotherapy who had side effects said that staff definitely did
everything possible to control the side effects of the radiotherapy; 17% said they did so to
some extent. 4% said they could have done more.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying staff definitely did everything possible to control the side
effects of the radiotherapy. Scores in Health Boards / Trust ranged from 72% as the
lowest score to 82% as the highest Health Board / Trust score.
63. Side effects of chemotherapy
Did hospital staff do everything possible to control the side effects of
chemotherapy?
Overall Findings
42% of patients said they had not had any chemotherapy and 4% of patients who had
chemotherapy said they had not had any side effects.
83
83% of patients having chemotherapy who had side effects said that staff definitely did
everything possible to control the side effects of the chemotherapy; 14% said they did so
to some extent. 2% said they could have done more.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying staff definitely did everything possible to control the side
effects of the chemotherapy. Scores in Health Boards / Trust ranged from 76% as the
lowest score to 87% as the highest Health Board / Trust score.
Staff did everything to control side effects of chemotherapy
100%
90%
86%
87%
85%
83%
80%
80%
80%
76%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
64. Control of pain
While you were being treated as an outpatient or day case, did hospital staff do
everything they could to help control your pain?
Overall Findings
Of those patients experiencing pain, 81% said that hospital staff definitely did everything
they could to help control the pain; 15% said they did so to some extent. 3% said they
could have done more to help control the pain. 42% did not have any pain.
84
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying hospital staff definitely did everything they could to help
control the pain. Scores in Health Boards / Trust ranged from 76% as the lowest score to
83% as the highest Health Board / Trust score.
Staff did everything they could to help control pain
100%
90%
83%
83%
83%
80%
80%
76%
76%
79%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
— All
65. Emotional support
While you were being treated as an outpatient or day case, were you given enough
emotional support from hospital staff?
Overall Findings
Of those patients needing emotional support, 72% said they were definitely given enough
emotional support from hospital staff; 20% said they were to some extent. 8% said they
would have liked more support.
85
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were definitely given enough emotional support from
hospital staff. Scores in Health Boards / Trust ranged from 65% as the lowest score to
75% as the highest Health Board / Trust score.
Staff definitely gave enough emotional support
100%
90%
80%
75%
75%
73%
72%
69%
70%
65%
67%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
86
Outpatient appointments
This section describes outpatients’ views about appointments with cancer doctors.
66. Having outpatient appointments
In the last 12 months, have you had an outpatients appointment with a cancer
doctor at one of the hospitals named in the covering letter?
Overall Findings
92% of patients overall said that they had had an outpatients appointment with a cancer
doctor in the last 12 months.
67. Doctor having right documentation
The last time you had an appointment with a cancer doctor, did they have the right
documents, such as medical notes, x-rays and test results?
Overall Findings
96% of patients overall said that the cancer doctor had the right documents (e.g. medical
notes, x-rays etc) the last time they had an appointment; 4% said that the doctor did not
have the right documents.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying that the cancer doctor had the right documents. Scores in
Health Boards / Trust ranged from 95% as the lowest score to 98% as the highest Health
Board / Trust score.
87
Care from general practices
This section describes the patients’ views about information given to GPs and
support from GPs and nurses.
68. Information given to GP by hospital
As far as you know, was your GP given enough information about your condition
and the treatment you had at the hospital?
Overall Findings
92% of patients said that, as far as they knew, their GP was given enough information
about their condition and treatment by the hospital; 8% said they were not given enough
information.
26% of patients (who were excluded from the above calculations) said they did not know
or could not remember, in answer to this question.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying their GP was given enough information. Scores in Health
Boards / Trust ranged from 91% as the lowest score to 94% as the highest Health Board /
Trust score.
69. Support from general practice staff
Do you think the GPs and nurses at your general practice did everything they could
to support you while you were having cancer treatment?
Overall Findings
Of those patients who said their general practice was involved in their care, 67% said that
GPs and nurses definitely did everything they could to support them whilst they were
having cancer treatment; 22% said they did to some extent and 11% said they could have
done more. 33% said their general practice was not involved.
88
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are some variations in the
proportion of patients saying GPs and nurses definitely did everything they could to
support them. Scores in Health Boards / Trust ranged from 64% as the lowest score to
70% as the highest Health Board / Trust score.
89
Overall NHS care
This section describes the patients’ views about staff working well together,
information given and if they felt treated as a whole person.
70. Hospital and community staff working well together
Did the different people treating and caring for you (such as GP, hospital doctors,
hospital nurses, specialist nurses, community nurses) work well together to give
you the best possible care?
Overall Findings
65% of patients said that the different people treating and caring for them always worked
well together to give the best possible care; a further 25% said they did so most of the
time. 8% said they only did so some of the time and 2% said they never did.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying all staff always worked well together. Scores in Health
Boards / Trust ranged from 61% as the lowest score to 69% as the highest Health Board /
Trust score.
Hospital and community staff work well together
100%
90%
80%
70%
67%
69%
66%
69%
67%
65%
61%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
Cardiff and Vale UHB
All
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
90
71. Other treatment
Have you had treatment from any of the following for you cancer?
Overall Findings
Patients were asked if they had had treatment from a range of therapists. 12% said they
had treatment from a physiotherapist; 6% said they had treatment from an occupational
therapist; 15% said they had treatment from a dietician; 2% said they had treatment from
a speech and language therapist and 11%said they had treatment from a lymphoedema
specialist.
72. Information about condition and treatment
How much information were you given about your condition and treatment?
Overall Findings
86% of patients overall said that they were given the right amount of information about
their condition and treatment; 12% said they were not given enough and 1% said they
were given too much.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they were given the right amount of information. Scores
in Health Boards / Trust ranged from 84% as the lowest score to 88% as the highest
Health Board / Trust score.
91
Right amount of information given on condition/treatment
100%
90%
86%
85%
85%
Betsi Cadwaladr UHB
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
87%
88%
84%
84%
Cwm Taf HB
Aneurin Bevan HB
80%
70%
60%
50%
40%
30%
20%
10%
0%
Cardiff and Vale UHB
Velindre NHST
All
73. Treated as a whole person
Sometimes people with cancer feel they are treated as “a set of cancer symptoms”,
rather than a whole person. In your NHS care over the last year, did you feel like
that?
Overall Findings
81% of patients said that they did not feel that they were treated as ‘a set of symptoms’
rather than a whole person over the last year; 15% said they sometimes felt this and 4%
said they often felt this way.
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that overall
the differences are not significant.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients saying they did not feel that they were treated as ‘a set of
symptoms’ rather than a whole person. Scores in Health Boards / Trust ranged from 79%
as the lowest score to 87% as the highest Health Board / Trust score.
92
Did not feel treated like 'a set of symptoms'
100%
90%
87%
83%
80%
79%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
80%
80%
82%
81%
Aneurin Bevan HB
Velindre NHST
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Cwm Taf HB
All
74. Patients rating of care
Overall how would you rate your care?
Overall Findings
89% of patients said that their care was either excellent (58%) or very good (31%). 8%
said it was good and 3% said it was either only fair (2%) or poor (1%).
Findings by Tumour Group
There was some variation between cancer types but statistical tests indicate that the
differences between cancer groups are not significant overall.
Findings by Health Board / Trust
Results from individual Health Boards / Trust show that there are significant variations in
the proportion of patients rating their care as either excellent or very good. Scores in
Health Boards / Trust ranged from 84% as the lowest score to 92% as the highest Health
Board / Trust score.
93
Overall rating of care excellent / very good
100%
92%
90%
90%
86%
85%
Hywel Dda HB
Abertawe Bro
Morgannwg UHB
91%
86%
84%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Betsi Cadwaladr UHB
Cardiff and Vale UHB
Cwm Taf HB
Aneurin Bevan HB
Velindre NHST
All
94
6. Special analyses and demographics
Differences between tumour groups
It is clear that there is considerable variation between the scores given by patients in
some tumour groups as distinct from others. Looking at each question, and measuring the
number of times that a tumour group appears as the highest scoring or lowest scoring
tumour group, we find that patients with Breast cancer are more likely than any other type
of cancer patients to be positive about their care and treatment, giving the highest ratings
on 22 scored questions in the survey; and patients most likely to give the poorest scores
were Sarcoma (poorest on 7), Lung (poorest on 8), and Urology (poorest on 14).
Tumour Group
Number times
highest score
Number times
Lowest score
Breast cancer
22
0
Brain / CNS
3
2
Colorectal / LGI
3
2
Gynaecological cancer
2
1
Haematological cancer
1
5
Head and neck cancer
0
3
Lung cancer
5
8
Other cancers
0
2
Prostate cancer
6
1
Sarcoma
3
7
Skin cancer
8
2
Upper GI
1
5
Urological cancer
2
14
Table 13 Tumour groups with highest and lowest scores
95
There are, however, still extreme ranges of performance between tumour groups on the
same question, as is made clear by the following table:
Wales Question in 2013
Lowest Score
Highest Score
Q4
Health got better or stayed the
same whilst waiting for first
appointment with a hospital
doctor
Sarcoma
60%
Breast
92%
Q13
Completely understood the
explanation of what was wrong
with them
Haematological
56%
Breast
81%
Q14
Given easy to understand
information about the type of
cancer they had
Brain / CNS
32%
Prostate
78%
Q38
Given written information about
their operation
Sarcoma
43%
Prostate
78%
Q45
Patient’s family definitely had
time to talk to the doctor
Lung
53%
Skin
67%
Q73
Did not feel that they were
treated as a set of cancer
symptoms
Lung
76%
Skin
93%
Table 14 Differences between cancer groups
Only the Breast tumour group achieves no lowest scores on any question in the survey in
Wales.
It is the case that continuing efforts need to be made to reduce the "information gap" in
particular between the best and poorest performing tumour groups.
In patient experience surveys of cancer patients, there are always very significant
differences between the ratings given by patients with different types of cancer. In many
cases it is patients with the most common cancers who are the most positive, as is the
case in Wales; and conversely it is patients with rarer cancers who are the least positive.
In the context of the Wales results, the results from some tumour groups - such as Lung
cancer - are quite different, and more negative, than the results for Lung cancer from
other jurisdictions.
96
Differences between Boards / Trust
The Wales CPES data has been analysed by Health Board / Trust and by hospital site
within each Health Board / Trust. Each Health Board / Trust has within it a number of
hospitals, some of which have very small numbers of respondents, which make it
impossible to report at hospital level in those circumstances. The Powys Health Board
also has a very small number of respondents because while Primary Care services in
Powys support cancer patients it does not treat cancer patients in the acute sector except
for palliative care purposes, with its patients going outside the Board boundaries for acute
phase treatment and follow up. Therefore it has not been possible to include analysis for
Powys within this Report.
Looking at the difference between Board / Trust scores on each question in the survey,
and the all-Wales all Cancers score on each question, and using only statistically
significant differences, this pattern is revealed:
Board / Trust
Score Sig.
Higher
Score Sig.
Lower
7A1
Betsi Cadwaladr
10
1
7A2
Hywel Dda
2
10
7A3
Abertawe Bro Morgannwg
0
24
7A4
Cardiff and Vale
14
0
7A5
Cwm Taf
2
10
7A6
Aneurin Bevan
2
3
7A7
Powys
n/a
n/a
24
0
RQF Velindre (including outreach clinics other sites)
Table 15 Significant differences between Boards
There are also important statistically significant differences in the results of the Wales
CPES at hospital level. The table below sets out the number of questions in the survey on
which individual hospitals have more positive scores or more negative scores; the table
demonstrates that the most significant negative outliers are Singleton Hospital Swansea;
Glangwili Hospital Carmarthen; Morriston Hospital, Swansea and Royal Glamorgan
Hospital. The most positive outliers are Velindre Hospital; Ysbyty Gwynedd; and
Llandough Hospital.
In the following table the Velindre Chemotherapy Outreach service at a number of other
hospital sites is treated separately from the main service at Velindre so some hospitals
appear on the list twice; only hospitals with sufficient numbers of respondents have been
included.
97
Board/
Trust
Hospital
7A1
7A2
7A3
7A4
7A5
7A6
RQF
Score Sig.
Higher
Score Sig.
Lower
Central (Glan Clwyd)
0
8
East (Wrexham)
12
1
West (Ysbyty Gwynedd)
21
3
Bronglais General Hospital
3
9
Glangwili General Hospital
1
21
Prince Philip Hospital
6
2
Withybush General Hospital
6
1
Morriston Hospital
1
15
Neath Port Talbot Hospital
8
1
Princess of Wales Hospital
2
8
Singleton Hospital
0
34
Llandough Hospital
13
0
University Hospital of Wales
7
1
Prince Charles Hospital
2
3
Royal Glamorgan Hospital
4
11
Nevill Hall Hospital
6
1
Royal Gwent Hospital
2
6
Nevill Hall Hospital
4
4
Princess of Wales Hospital
5
2
Royal Glamorgan Hospital
7
0
Royal Gwent Hospital
1
12
Velindre (Chemotherapy Outreach)
7
1
Velindre Hospital
26
0
Table 16 Significant differences between hospital scores
98
The impact of the Clinical Nurse Specialist and Key Worker
Perhaps the most striking finding of the Wales 2013 CPES survey is that related to the
impact of the Clinical Nurse Specialist (CNS). On almost all questions in the survey,
patients who have a CNS are significantly more positive than patients who do not have
access to a CNS. It is most unusual for a variable to be as powerful a predictor of views
from respondents and to have such impact on individual questions. It is clear that the
presence of a CNS makes a substantial positive difference to the perceived quality of
cancer services seen by patients.
On 59 questions in the survey, patients who had a CNS were more likely to be positive
about their care and treatment than patients who did not; and the scale of differences on
many questions is very substantial. All of these differences are statistically significant.
However, the scale of difference between the two groups of patients is not as substantial
as has been the case in other cancer surveys.
The most pronounced differences in view between those patients with a CNS and those
without one in 2013 were in respect of verbal and written information, involvement,
information on financial support, discharge information and post discharge care and
emotional support.
Examples of the sizeable differences that exist between patients with CNS support and
those without such support are set out below:
Wales Question 2013
With
CNS
No
CNS
Q14
Given easy to understand written information about the type of
cancer they had
66%
47%
Q15
Given choice of different types of treatment
87%
67%
Q18
Given easy to understand written information about side effects of
treatment
85%
69%
Q20
Involved in treatment as much as they wanted to be
74%
60%
Q30
Offered written assessment and care plan
28%
9%
Q31
Given information about support and self help groups
74%
44%
Q33
Given information on financial help and benefits they might be
entitled to
50%
26%
Q38
Given easy to understand written information about operation
74%
54%
Q61
Given enough care/help from health and social services after
discharge
64%
40%
Q70
Different people treating you worked well together to give you the
best possible care
68%
53%
Q74
Overall rating of care excellent / very good
91%
77%
Table 17 Differences by CNS
99
The evidence is that the impact of the CNS is overwhelmingly positive.
The Wales CPES also asked about the impact of the Key Worker on patient perceptions
of care. 66% of patients across Wales said they had a Key Worker (36% said this was
their CNS and 30% said this was not a CNS), although there are significant variations
between Boards and especially between Hospitals on the availability of Key Workers for
patients. In contrast, 88% of patients across Wales said they had a CNS. The proportion
of patients having Key Workers varied by Board from 58% to 75% and by Hospital from
49% to 83%.
It is clear from the responses that the presence of a Key Worker, whether the CNS or
someone else, makes a considerable difference to patients’ views of care. Looking at the
different views of patients who had a Key Worker with those who did not have one,
patients with a Key Worker were much more positive than those who did not have one. If
the Key Worker was their CNS, patients were more positive on 61 questions in the survey
(out of 67); if the Key Worker was not a CNS, patients were more positive on 57
questions.
CNS by other variables
Looking at the distribution of CNS cover by tumour group, most cancer tumour groups
have high proportions of patients with a CNS, including Breast (96% with a CNS), Upper
GI (95%) and Lung (93%). The tumour group with the lowest proportion of patients with a
CNS is Urological, where the coverage is only 70%. This distribution of scores by tumour
group is similar to that reported in other cancer patient experience surveys.
It is clear from the tumour group data that the presence of a CNS makes a particular
difference to those over 75; the differences, where they exist, between those with a CNS
and those without one are very substantial amongst the over 75s and less marked in
character in the under 75s.
The differences which are seen in other cancer patient experience surveys in respect of
the proportions of patients with a CNS diagnosed within the last year and those diagnosed
more than 5 years ago are not seen at a statistically significant level in Wales.
100
The impact of assessment and care plans
The responses to questions on care plans in the survey demonstrate that even the
initiation of discussions with the patients as a preliminary to creating a written care plan is
not universal across Wales.
Taking the all-Wales all cancers score, only 58% of patients said that they had had such a
discussion, with scores in individual Boards ranging from 49% (Abertawe Bro Morgannwg)
to 67% (Velindre). Scores in individual hospitals ranged more widely, with the highest
score being achieved at Nevill Hall (70%) and the lowest at Morriston (43%).
In terms of translating these discussions where they occurred into offers of written care
plans to the patient, the evidence is not positive, with only just over 1 in 5 patients saying
that they had had such an offer of a written plan (22% for all Boards / Trust in Wales). In
some tumour group services within particular Boards, there is a very low level of
"translation" of discussions about care plans in to "offers" of providing them to the patient.
Examples are:

Patients with Sarcoma treated at Velindre: 60% had the opportunity to discuss their
needs and concerns, but only 13% actually had the offer of a written care plan
given to them.

Scores in the Urology tumour group are poor in terms of delivering the offer of a
written care plan to patients: only 7% of patients overall in the Urological tumour
group treated at Cwm Taf were offered a care plan; 8% at Cardiff and the Vale; and
12% at Betsi Cadwaladr.

Scores in individual services were also low across Wales, with (as an example)
only 8% of Gynaecological patients in the Hywel Dda Board being offered a written
care plan.
There is obviously a considerable way to go before the offers of written care plans are
made near universal across Wales. This is an important topic as there is evidence from
the survey that those with offers of care plans have a rather more positive view of the
quality of services than is the case if no such offer has been made.
101
The impact of long term conditions
The Wales CPES sought information from patients in respect of whether they had another
long term condition, or multiple conditions, other than cancer. The long term conditions
(LTCs) identified in the survey were as follows:
 Deafness / severe hearing impairment
 Blindness / partially sighted
 Long standing physical condition
 Learning disability
 Mental health conditions
 Long standing illness, e.g. HIV, diabetes, chronic heart disease, or epilepsy
Responses were analysed by comparing the group of patients who had one or more of the
long term conditions with the group who said they did not have a long term condition. The
findings show that in Wales there were 35 questions on which there are statistically
significant differences between the two groups of patients, with most such differences (33
out of 35) showing that patients with a long term condition are less positive than patients
without such a long term condition.
The only items on which patients with long term conditions were more positive than those
without long term conditions were in respect of being offered an assessment and care
plan (Q30), and being asked which name they wished to be called by (Q52).
Examples of the scale of such differences between those with and those without a long
term condition are as follows, using the 2013 data:
Question Wales 2013
LTC
Non
LTC
Q15
Given choice of different types of treatment
82%
86%
Q17
Possible side effects of treatment explained in a way they
could understand
71%
77%
Q31
Hospital staff gave information about support/self help groups
for people with cancer
64%
73%
Q38
Given written information about their operation
67%
72%
Q42
Received understandable answers from Drs
76%
83%
Q56
Staff did everything they could to control pain whilst staying as
an inpatient overnight
83%
88%
Q73
Did not feel as if they were treated as a set of cancer
symptoms rather than as a whole person
78%
83%
Table 18 Differences between those with and those without an LTC
102
The conclusion to be drawn is that patients with long term conditions are rather less likely
to be positive about their cancer care than are patients without such conditions, and this
less positive assessment is present across a wide range of issues measured in the
survey. This finding is congruent with the findings from other cancer patient experience
surveys.
Patients with specific long term conditions
The data from patients who specified that they had a particular long term condition has
been analysed and has shown broadly similar findings as in other cancer patient surveys.
This analysis shows that in respect of long term conditions such as deafness and long
standing illness (such as HIV, diabetes etc), the differences between those with such a
specific condition and those who did not have it are, in most cases, quite small. However,
patients with mental health conditions were less likely to be positive about a wide range of
issues than were patients with no long term conditions, as the chart below illustrates:
Patient did not feel treated as 'a set of cancer symptoms'
100.0%
90.0%
80.0%
70.0%
60.0%
50.0%
40.0%
30.0%
20.0%
10.0%
0.0%
No LTC
All LTCs
Deafness
Long standing
illness
Blindness
Long standing
physical condition
Mental health
condition
Learning disability
Looking at the data as a whole, and all co-morbidities, we find that patients with long
standing physical conditions are less positive about their care and treatment than those
without a long term condition at all on 44 questions in the survey; and on all these
questions it is those with the long term physical condition that are least positive.
103
The equivalent figures for the other types of long term condition are: Blindness / partially
sighted, 10 significant differences (on 9 questions those with blindness or partial sight
being less positive); Deafness, 9 significant differences (on 7 questions those with
deafness being less positive); those with a long standing illness such as HIV or diabetes,
11 significant differences (on 10 questions those with a long standing illness being less
positive); those with a learning disability, 9 significant differences (on 8 questions those
with a learning disability being less positive); and those with a mental health condition, 11
significant differences (on all 11 questions those with a mental health condition being less
positive).
It continues to be the case that further efforts need to be made to ensure that cancer
patients with mental health and learning disabilities receive the kinds of information that
are useful and understandable to them, and are treated in ways which are seen by them
to be fair and appropriate.
The case for positive action to be taken by NHS staff to address the distinct needs of
people with long term conditions, especially in areas which are capable of being improved
by information provision, continues to be clear.
104
Differences relating to length of time since first treatment
In the 2013 Wales CPES survey, the questionnaire included a question (Q80) on the
length of time that had elapsed since the patient was first treated for “this cancer”, i.e. the
cancer that was being treated in the hospital episode between June 2012 and March
2013. Respondents were divided into those who had first been treated within the last year;
between 1 and 5 years ago; and more than 5 years ago.
Analysis of the differences between patients who began their treatment for cancer within
the last year as compared to more than 5 years ago shows that there are some
differences between the views of patients diagnosed more than 5 years ago and patients
diagnosed more recently. There are 5 questions in the survey in which patients who
began treatment more than 5 years ago have less positive views than those who began
treatment more recently. The questions on which "year 1" patients were the most positive
were on being given written information about the type of cancer they had; being given the
name of a Key Worker; being given the opportunity discuss their needs and concerns in
order to put together their care plan; and being offered a written care plan.
The intermediate group (1-5 years on from the point of first treatment) is the most positive
group on only one item - having the highest proportion of patients saying that they had
been invited to take part in cancer research.
The group of patients who first started treatment more than 5 years ago is likely, in many
cases, to have been admitted to hospital for a recurrence of cancer, and their more
negative feelings related to care and treatment may be associated with this unwelcome
development.
As examples of the scale of differences that exist within this pattern, the following
questions show particularly marked variation between those starting treatment in the last
year and those who started 5 or more years ago:
Last
year
5+
years
 Q14
Given easy to understand written information about the type of
cancer they had
65%
46%
 Q25
Given the name / contact details of a Key Worker
69%
46%
 Q29
Given opportunity to discuss their needs and concerns in order to
construct their care plan
60%
43%
 Q30
Offered a written care plan
24%
14%
105
The impact of social deprivation
The Wales survey data in 2013 has been analysed by IMD quintile 4 (i.e. each deprivation
level based on 20% groupings within the 0-100% range) and there are large numbers of
questions on which there are statistically significant differences of view as between
quintile 1 (the most deprived) and quintile 5 (the least deprived). There are 17 questions
on which there are significant differences between quintile 1 and quintile 5 - but, as in
other cancer patient surveys, the differences are not all in the same direction.
The IMD analysis can be summarised in the following way:

Whether deciles or quintiles are used, the analysis shows similar results

Testing for difference between one decile or quintile and the next produces virtually no
significant results

However, when the extremes of the range are taken (e.g. quintile 1 - quintile 5), a large
number of differences can be found

The significant differences that exist are not uni-dimensional i.e. the most deprived
quintile is more positive on some issues; and the least deprived on others.
The 9 questions on which patients in the most deprived quintile were more positive than
patients in the least deprive quintile were as follows:

Was seen as soon as was necessary
Q2

When patient first told they had cancer, told they could bring a family member or
friend with them
Q11

Future side effects of treatment explained in a way they could understand
Q19

Offered a written care plan
Q30

Patient asked which name they preferred to be called by
Q52
Had enough privacy when being examined or treated
Q54
Staff did everything possible to control side effects of chemotherapy
Q63
Given enough emotional support from hospital staff when being treated as an
outpatient/day case
Q65
Different people caring for them always worked well together to give them the best
possible care
Q70




4
The IMD quintiles and deciles are intended to provide range information in respect of the differences
between the most deprived quintile to the least deprived. It is this range which is the most accurate
description in the UK of the different socio-economic circumstances of patients and it is therefore right that 106
we should look at the differences between the extremes of the range as distinct from testing results across
the range as a whole.
The 8 questions in which patients in the least deprived quintile (quintile 5) were more
positive than patients in the most deprived quintile were as follows:

Saw GP only 1-2 times before referred to hospital
Q1

Given easy to understand written information about side effects of treatment
Q18

Got easy to understand answers from their Key Worker when they had important
questions to ask
Q28

Staff gave information about self help and support groups
Q31

Went on to take part in cancer research
Q34

Given easy to understand answers from a doctor all / most of the time when they
had important questions to ask
Q42

Doctors did not talk in front of them as if they were not there
Q44

Given enough support post discharge from health and social services
Q61
There is high consistency between the Wales Cancer Patient Survey data and that from
other surveys in which questions are rated more positively by the least and most deprived.
This finding emphasises the importance of the concept of the “informed patient”, which
aims to ensure that the content of information is both accessible to all groups and is
comprehensive.
107
The impact of age
The Wales all cancers national dataset has been analysed by using standard age bands:
16-25; 26-35; 36-50; 51-65; 66-75; and 76+. These bands were chosen in order to identify
any specific age-related differences in the views of cancer patients which could illuminate
the implementation of policy.
The age-related analysis identified only 4 questions on which there were statistically
significant differences across the age bands, with patients over 75 being the least positive
on 2 questions, one of the youngest groups (26-35) being the least positive on 1 question;
and the middle years group being least positive on 1 question.
The clearest example of the classic age distribution profile in the survey is highlighted in
the chart below which shows the scores on question 70, which asked patients if different
people treating them worked well together to give the patient the best possible care.
Staff always work well together
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
16-25
26-35
36-50
51-65
66-75
76+
The other questions on which there are statistically significant age-related differences are:
Q18: Given easy to understand written information about the side effects of
treatments: oldest age group, 76+, the least positive. Highest age band score 36-50,
89%; lowest age band score 76+, 71%
Q34: Had a discussion about taking part in cancer research: oldest age group 76+
were the least likely to have had the discussion. Highest age band score 16-25, 43%;
lowest age band score 76+, 17%
Q65: Given enough emotional support by staff whilst a day case/outpatient: highest
age band score 16-25, 85%; lowest age band score, 36-50, 59%
108
It is often the case in patient surveys that younger patients are the least likely to be
positive and there is probably a common causality for the age related differences reported
here. Younger patients, who may have less experience of being in hospital than older
people, may be in some cases less likely to understand medical terminology and routines
and may therefore understand less of what is said to them than do older patients.
However, it is not always younger patients who have the least positive experiences of
cancer care. The most prominent example in other cancer surveys of an issue where it is
older people who have least good access to support and information arises from the
question on patients being given the name of a Clinical Nurse Specialist (CNS). In the
Wales Cancer Patient Experience Survey these differences are not statistically significant
but on this question it was the oldest age group (76+) who were the least likely to say they
were given the name of a Clinical Nurse Specialist, with the proportions in each age band
saying they had a CNS being the highest amongst the 16-25s (95%) and lowest amongst
the 76+ age group (84%).
109
The impact of gender
Differences in the views of patients related to their gender tend to be of smaller scale than
other demographic factors, where they exist.
In the Wales Cancer Patient Experience Survey, a broadly consistent pattern of gender
difference is displayed. There are 19 questions in the Wales cancer patient experience
survey on which there were statistically significant differences of view between men and
women; in most cases men were more positive (12 questions) but on 7 questions where
there were significant differences, women were more positive than men.
The strategic points in the Wales 2013 survey are:

Men were more positive about staff and staff working well together than are women.

Men were more positive about privacy, being given respect and dignity, being told
enough about their condition and treatment, and about being treated as a person
rather than as a set of symptoms.

Men were more positive about discharge and post discharge arrangements than
are women.
In the 2013 Wales CPES, the 7 questions on which women were more positive were as
follows:

Women were more likely to say that they saw their GP only once or twice before
being referred on to hospital

Women were more likely to say they were given written information about the side
effects of their treatment

Women were much more likely to be given the name of a Clinical Nurse Specialist

Women were more lily to say that they had been given the name of a Key Worker

Women were more likely to say that they were given the opportunity to discuss
their needs and concerns to inform the construction of their care plan

Women were more likely to say that they had been approached to see if they would
like to take part in cancer research

Women were more likely to say that doctors did not talk in front of them as if they
were not there
110
Three examples of the general principle that men are more positive than women are set
out in the chart below:
Differences by gender
100.0%
90.0%
80.0%
70.0%
60.0%
50.0%
Men
Women
40.0%
30.0%
20.0%
10.0%
0.0%
Given written
information on type
of cancer
Told about future side
effects
Confidence and trust
in all ward nurses
The Impact of ethnicity
The data from the 2013 Wales CPES has been analysed to assess any differences that
might be seen between patients from differing Black and Minority Ethnic groups and White
patients, based on the Office for National Statistics official groupings.
However, there was too little data to show any real differences between these groups,
almost certainly because of the small number of ethnic minority patients in the initial
sample and response groups. Analysis showed that there were no statistically significant
differences between ethnic groups on any question.
111
The Impact of sexual orientation
A question was asked in the Wales CPES about the patients sexual orientation - whether
they regarded themselves as heterosexual, or bisexual, gay or lesbian, or had other
sexuality.
There are only small numbers of significant differences when we combine all the non
heterosexual groups together for analysis purposes, mainly due to the small number of
respondents who classified themselves as such. These are as follows:
Q15: Being given choice of different types of treatment: heterosexuals 84%; non
heterosexuals 66%
Q20: Involved as much as they wanted to be about their care and treatment:
heterosexuals 71%; non heterosexuals 56%
Q25: Given the name of a Key Worker: heterosexuals 66%; non heterosexuals 53%
Q52: Doctors and nurses in hospital asked what name you wanted to be called by:
heterosexuals 62%; non heterosexuals 42%
The results from other cancer surveys show larger numbers of statistically significant
differences between non heterosexuals and heterosexuals.
112
Differences between Welsh and English speakers
Two kinds of analysis were undertaken on the Wales CPES data to identify any
differences of view that might exist between patients whose preferred language of
communication was Welsh and those for whom it was English.
Question 82 in the questionnaire asked patients to identify which was their preferred
language for "receiving information and treatment". When we compare those who said
that their preferred language was Welsh (3%) as distinct from English (96%), the analysis
showed that there were eleven (11) statistically significant differences across questions,
with - on balance - more positive results being given by those who preferred Welsh than
those who preferred English. On 8 of the 11 scored questions those who preferred Welsh
scored more positively; and on 3 questions those who preferred English scored more
highly.
The 3 questions on which those who preferred English scored more highly were in respect
of:
Q11: Were you told that you could bring a friend or family member with you
Q25: Given the name and contact details of a Key Worker 5
Q48: Ward nurses talked in front of me as if I was not there
The questions on which those who preferred Welsh scored more highly were as follows:
Welsh
English
Q26
Easy to contact my Key Worker
98%
81%
Q27
Key Worker listened carefully to me
98%
92%
Q41
Able to talk to their doctor as often as they liked
62%
53%
Q46
Always received understandable answers to questions from
ward nurses
82%
75%
Q63
Staff controlled side effects of chemotherapy
90%
83%
Q64
Staff did everything they could to control pain whilst
patients was a day case/outpatient
89%
81%
Q69
GPs/nurses at the practice did everything they could to
support the patient whilst they were having treatment
73%
66%
Q74
Patients overall rating of care excellent/very good
92%
88%
Responses to the survey can also be analysed to compare those who chose to answer in
English and the 162 patients who answered in Welsh. When we analyse the responses in
this way, we find that those who completed in Welsh were more positive than patients who
completed the survey in English. This is true not only of the questions set out above but
on a much wider range of questions.
113
5
In respect of Question 25, this could be explained by a higher prevalence of Key Worker information being
given in English majority speaking Boards.
7. Survey development and methodology
Development of the questionnaire
The Wales Cancer Patient Experience Survey questionnaire draws on the 2010, 2012,
and 2013 cancer survey questionnaires developed and used in England by Quality
Health, and on the England national inpatient survey as the basis for many of its
questions alongside a number of new questions, e.g. on Key Workers, developed
specifically for the Welsh survey.
Cognitive testing of the whole questionnaire and on the new questions was undertaken to
ensure that patients understood the questions being asked, that no important issues had
been omitted and to check that the questions were, as far as possible, in the order that
the patient would recognise as fitting the pathway that they had followed. Cognitive testing
was undertaken with both English and Welsh speaking patients.
As all the questions repeated from the previous iterations of the survey had been
cognitively tested, it was decided that, although all questions in the Wales questionnaire
would be tested, greater emphasis would be placed on the structure of new questions,
their place in the survey as a whole, instructions for routing, and those questions with
more complex terminology or timescale assessments involved. It is known from evidence
from the patient help lines run by Quality Health for many patient survey systems and for
Patient Reported Outcome Measures (PROMs) that the issues of timescale assessment,
and the meaning of NHS terminology and words which are unusual for the reader, are
ones which prove difficult to understand for some patients.
A list of volunteers for the cognitive testing was provided by Macmillan Cancer Support;
these patients were from a wide range of cancer types and from all over Wales.
Questionnaires were sent to participants who were asked to complete the questionnaire
before the interview. This style of testing was used to help determine the participant's
ability to complete the questionnaire on their own, and to follow routing instructions.
Interviewees were talked through the questionnaire with the interviewer asking what
answer was given to each question, recording the answers on screen, and then asking a
number of scripted questions. If required, spontaneous follow up questions were allowed
to probe further into the interviewee’s reasons for giving the answer they did and their
understanding of the question. Potential issues and follow up questions were listed by
question on the testing template used by interviewers. The templates allowed interviewers
to type in responses in real time and to record question answers given by the
interviewees.
114
Interviewers also asked a number of general questions. These included:
~ What do you think about the use of the word Cancer throughout the
questionnaire?
~ Was the ‘lead-in text’ before some of the questions clear and helpful?
~ Did you understand and follow the routing instructions beside some questions?
~ Are there any important things that you think are missing from the survey?
~ Did you have treatment at more than one hospital site / NHS Health Board /
Trust, and if so which site have you been assuming you are answering about,
and why did you make that decision?
~ Do you have any other comments to make?
As each phase of the testing was completed discussions took place about any issues that
had arisen and questions were refined.
Methodology
The Wales 2013 Cancer Patient Experience Survey included all adult patients (aged 16
and over) with a primary diagnosis of cancer in the first diagnosis field, who had been
admitted to an NHS hospital as an inpatient or as a day case patient, and had been in
active treatment between 1st June 2012 and 30th March 2013. Data definitions identifying
patients qualifying for inclusion were based on the ICD10 codes of C00-C99, and D05
were used. Patients with an ICD10 code of C44 (other malignant neoplasms of the skin),
and C84 (some Haematology codes) were excluded from the sample by agreement. There
are only very small numbers of such patients with these codes.
The Wales data capture methodology was identical to that used in England and it is
therefore the case that there is comparability between most questions in the England
Cancer Patient Experience Survey 2013 and the Wales Cancer Patient Experience
Survey.
All 7 Health Boards and 1 Trust providing and treating adult patients with cancer were
included in the survey. The Local Health Boards and the Trust (Velindre) providing adult
cancer services included patients attending 30 separate hospitals, including relatively
small units. Of the 30 hospitals, 12 were small units with low numbers of patients in the
sample, where it is not possible to test differences between their scores and the national
score for individual questions, because of such small numbers of patients in the universe
and in the response group.18 hospitals therefore have scores attributed to them.
115
Quality Health undertook the checking of patients through the DBS system (Demographic
Batch Service) for deaths, once Health Boards / Trust had selected their patients from
local patient administration systems. DBS checks were undertaken on three separate
occasions; at the initial send out stage, and at first and second reminder stage.
Centralisation of the DBS checking system has been extremely successful in reducing
significantly the number of patients who were reported as deceased through the helpline
and has minimised distress levels for families.
A Guidance Manual was provided to guide Health Board / Trust staff through the sampling
process and to provide background information to the survey. The national Guidance
Manual and data capture documents, and all survey materials, can be located at
www.quality-health.co.uk.
The survey continues to be run using procedures very similar to those used for the
national patient surveys run by the England Care Quality Commission, which some Health
Board / Trust staff will be familiar with. This was the first time that a national cancer
patient experience survey had been undertaken across Wales, and Board and Trust staff
worked well together to establish the sample and check the data. In this process, they
were supported at all stages by the Data Team at Quality Health.
Data security agreements were signed between each Health Board / Trust and Quality
Health who undertook all fieldwork including despatch and receipt of questionnaires, data
capture and analysis of the data. All personal data was held within a closed loop system
and no third party contractors had any access to personal information.
The Survey process
Samples were drawn by Health Boards / Trust in accordance with the Guidance Manual
provided to them and then checked through the DBS system before submission to Quality
Health. Quality Health then undertook 16 further types of checks to ensure that the
sample met the survey criteria and that all requested information was present.
In particular, duplicate or multiple admissions or attendances were removed from Health
Board / Trust samples, and also across Health Boards / Trust nationwide, in order to
prevent patients from being sent multiple questionnaires related to attendance at different
Health Boards / Trust.
The survey was conducted by post, with two reminders (to non-responders only) as is the
case with the national patient surveys. A standard questionnaire, covering letter and
reminder letters were used. All covering letters were sent out on Health Board / Trust
headed paper and signed by a member of the Health Board / Trust’s staff – often the
Chief Executive; specific authorisation was obtained from each Health Board / Trust for
the use of the signature and headed paper. A language leaflet was also enclosed offering
translation services and a pre-paid return envelope was included so that patients could
respond without financial cost.
116
The questionnaire was made available to patients in both English and Welsh, and the
cover letter and supporting documents were also translated.
Quality Health also ran a national freephone helpline for patients, and supported
completion of the survey through textphone and language translation facilities, using its
own in house staff.
Questionnaires were returned to Quality Health for data capture. A log was kept of all
helpline calls and correspondence detailing information about deceased patients, those
who had moved or those who did not wish to participate in the survey.
At all stages of the process procedures were put in place to comply with the Data
Protection Act 1998, the NHS Code of Practice on Confidentiality (2003), which
incorporates the Caldicott principles, the ISO 27001 and 9001 accreditations enjoyed by
Quality Health, and by the requirements of IGSoCv10.
Data processing and analysis
All response data was verified and checked before submission for analysis.
On some questions patients were asked to skip forward if the main question was not
relevant to them. For example, question 5 which asks about whether the patient has had
diagnostic tests. Where patients said ‘no’, they were then asked to go to question 10. In
cases such as this special rules were applied to the data in questions 6 to 10 to remove
any responses where patients said ‘no’ to question 5.
Overall, there are 67 scored "indicator” or scored questions in the Wales Cancer Patient
Experience Survey 2013 on which analysis has been undertaken. There are 7 questions
(3, 5, 10, 36, 40, 66 and 71) in the questionnaire which are not scored. These questions
are information or routing questions e.g. question 5 which asks if patients have had tests.
For the 67 indicator questions key scores have been calculated after removing any
patients who said that the question did not apply to them, who ticked ‘don’t know / can’t
remember’ or who did not answer at all; these key scores are also used in the charts and
tables.
In the England 2012 CPES, one amendment to the data capture criteria was made by
agreement with the Cancer Patient Experience Advisory Group (CPEAG) to remove a very
small group of haematological patients with rare conditions (e.g. Mycosis Fungoides, and
unspecified T cell Lymphomas) who may not be told by clinicians on diagnosis that they
had cancer. This convention has been applied to the inclusion criteria for the Wales
CPES.
117
The Wales CPES sample was 10,945 and the number of respondents was 7,352. These
datasets are regarded internationally as highly valuable and the methodology and
questionnaire is being used as a base for studies of cancer patients in many countries.
No weighting or standardisation was applied to the data before analysis. Further
research sponsored by Macmillan Cancer Support and conducted by the Cambridge
Centre for Health Services Research in respect of the England CPES indicates that the
composition of the patient population in a hospital Trust in England (e.g. as defined by
age, gender, ethnicity and cancer diagnosis case-mix) has only a small scale impact on
the cancer patient experience scores of that hospital Trust and its relative performance in
respect of other hospitals.6 Based on this, a major influence of patient case-mix on the
performance ranks of Welsh Health Boards / Trust can be judged unlikely.
The conventions used in this Report in respect of analysing and presenting data are as
follows:
In each section of this Report, two kinds of statistical tests have been used to assess
whether apparent differences in results have real significance. These are the T test,
used to assess whether differences between (for example) one tumour group and the
total for all tumour groups are of real standing. The test has been applied to give
results at the 95% confidence interval and in almost all cases the resulting confidence
interval is +/- 1.9%. The only cases where the confidence interval is wider is where the
absolute numbers of respondents falls below about 500 in a category being analysed.
At whole survey level, including all cancer groups and all respondents, the confidence
interval at 95% is +/- 0.9%.
The second statistical test used is chi squared, giving an analysis of whether the
differences seen across all tumour groups (or other categories) are in fact significant
taking them as a whole. In this Report we have used a standard form of words in the
text to reflect instances where chi square indicates that there are no real differences in
results looking at tumour groups as a whole.
Where we are analysing the results by tumour group, we only report where a particular
group’s results have been identified as significantly different from the results for all
tumour groups. In cases where chi square tells us that the results across all groups are
not significantly different, we have indicated in the text that there are no real
differences between them.
Normally, when analysing results by tumour group, we have used examples from the
best and worst performing tumour groups on that particular question. These examples
have only been used where that tumour group itself has significantly different results
from that of respondents as a whole.
6
Abel GA, Saunders CL, Lyratzopoulos G. Cancer patient experience, hospital performance and case
mix: evidence from England. Future Oncology, Pages 1-10. Posted online on 16 Dec 2013.The paper can118
be freely accessed: http://www.futuremedicine.com/doi/pdf/10.2217/fon.13.266
Reporting
The high response rate to the Wales 2013 CPES (69%) means that for most Health
Boards / Trust there are sufficient numbers of responders to make robust comparisons
between Health Boards / Trust, where we consider "all cancers" taken together, and
between tumour groups within Health Boards / Trust. One Board (Powys) however had a
small initial sample and consequently small numbers of respondents, because they treat
relatively few cancer patients and full reports have therefore not been provided for Powys.
Some hospitals, especially community hospitals, have small numbers of respondents and
it is not therefore possible to display results for these individual hospitals.
Reports have been produced at both national and Health Board / Trust level arising from
the 2013 Wales Cancer Patient Experience Survey. It is also the intention to produce
reports based on the location of the patients’ homes, rather than the Board and hospital of
treatment.
These reports are as follows:

This National Report, covering all Health Boards / Trust and all cancer types

Reports for each participating Health Board / Trust, indicating their performance
against providers generally, by cancer type, and by hospital within the Board.
119
8. Appendix A – Tables showing significant difference
Board Scores by Question Showing Those That are Significantly Different from the all Wales Total
Betsi
Cadwaladr
UHB
Abertawe
Bro
Hywel Dda Morgannwg Cardiff and
HB
UHB
Vale UHB Cwm Taf HB
Aneurin
Bevan HB
Velindre
NHST
Total
Q1
75%
73%
71%
74%
72%
75%
73%
73%
Q2
80%
78%
76%
80%
85%
73%
78%
78%
Q4
80%
79%
77%
81%
84%
80%
80%
79%
Q6
84%
81%
82%
83%
85%
78%
86%
83%
Q7
87%
85%
86%
86%
89%
86%
89%
87%
Q8
86%
83%
80%
87%
88%
79%
85%
84%
Q9
79%
77%
79%
83%
85%
76%
81%
79%
Q11
71%
70%
67%
66%
70%
68%
75%
70%
Q12
83%
84%
83%
87%
86%
86%
85%
84%
Q13
74%
75%
73%
75%
78%
73%
78%
75%
Q14
64%
61%
59%
62%
59%
62%
65%
62%
Q15
83%
81%
81%
88%
83%
85%
88%
84%
Q16
70%
67%
68%
74%
70%
75%
74%
71%
Q17
74%
71%
72%
74%
71%
73%
80%
75%
Q18
81%
79%
78%
77%
68%
77%
89%
82%
Q19
53%
51%
52%
54%
53%
58%
61%
55%
Q20
71%
69%
68%
76%
70%
73%
73%
71%
Q21
88%
85%
85%
93%
84%
91%
91%
88%
Q22
81%
79%
76%
78%
83%
78%
77%
78%
Q23
93%
90%
90%
92%
91%
91%
93%
92%
Q24
94%
91%
90%
93%
92%
90%
92%
92%
Q25
63%
58%
61%
72%
59%
75%
74%
66%
Q26
82%
84%
81%
83%
78%
88%
81%
82%
Q27
94%
93%
91%
91%
84%
90%
94%
92%
Q28
90%
92%
90%
94%
79%
84%
93%
91%
Q29
58%
52%
49%
60%
53%
61%
67%
58%
120
Betsi
Cadwaladr
UHB
Abertawe
Bro
Hywel Dda Morgannwg Cardiff and
HB
UHB
Vale UHB Cwm Taf HB
Aneurin
Bevan HB
Velindre
NHST
Total
Q30
24%
20%
21%
20%
20%
22%
25%
22%
Q31
68%
61%
62%
75%
58%
63%
77%
69%
Q32
70%
64%
60%
69%
56%
71%
74%
68%
Q33
52%
34%
28%
43%
42%
31%
53%
44%
Q34
25%
24%
26%
35%
18%
25%
38%
29%
Q35
62%
65%
66%
83%
45%
70%
62%
64%
Q37
86%
87%
88%
89%
86%
86%
87%
87%
Q38
77%
66%
62%
72%
72%
74%
71%
70%
Q39
78%
77%
79%
80%
72%
78%
77%
78%
Q41
54%
55%
52%
60%
48%
51%
55%
54%
Q42
81%
79%
79%
82%
78%
79%
80%
80%
Q43
87%
84%
86%
87%
87%
91%
87%
87%
Q44
86%
81%
83%
83%
85%
88%
84%
84%
Q45
63%
61%
61%
62%
60%
58%
62%
61%
Q46
78%
79%
69%
77%
71%
70%
77%
75%
Q47
76%
73%
69%
79%
71%
69%
74%
73%
Q48
88%
84%
84%
88%
86%
87%
85%
86%
Q49
62%
64%
53%
62%
61%
54%
65%
60%
Q50
91%
87%
88%
87%
87%
91%
90%
89%
Q51
84%
82%
84%
83%
82%
86%
86%
84%
Q52
66%
68%
59%
61%
54%
58%
60%
62%
Q53
84%
82%
82%
83%
84%
80%
86%
83%
Q54
94%
93%
94%
94%
94%
89%
95%
94%
Q55
66%
62%
60%
69%
55%
58%
65%
63%
Q56
86%
87%
83%
88%
87%
85%
86%
86%
Q57
87%
85%
82%
89%
84%
81%
85%
85%
121
Betsi
Cadwaladr
UHB
Abertawe
Bro
Hywel Dda Morgannwg Cardiff and
HB
UHB
Vale UHB Cwm Taf HB
Aneurin
Bevan HB
Velindre
NHST
Total
Q58
84%
80%
75%
87%
75%
82%
85%
81%
Q59
93%
90%
89%
96%
86%
90%
94%
92%
Q60
61%
53%
52%
55%
53%
61%
61%
57%
Q61
59%
62%
52%
68%
62%
61%
61%
59%
Q62
80%
76%
79%
72%
80%
82%
79%
79%
Q63
86%
85%
80%
80%
76%
87%
83%
83%
Q64
83%
83%
76%
80%
76%
79%
83%
81%
Q65
75%
75%
69%
73%
65%
67%
72%
72%
Q67
97%
95%
95%
96%
98%
97%
97%
96%
Q68
92%
92%
91%
93%
91%
94%
92%
92%
Q69
67%
70%
67%
70%
64%
66%
65%
67%
Q70
67%
66%
61%
69%
69%
67%
65%
65%
Q72
86%
85%
85%
87%
84%
84%
88%
86%
Q73
83%
80%
79%
87%
80%
82%
81%
81%
Q74
90%
86%
85%
92%
86%
84%
91%
89%
122
Tumour Group Scores by Question Showing Those That are Significantly Different from the all Wales Total
Breast
Colorectal /
Lower
Gastrointestinal
Tumour Groups
Lung
Prostate
Brain/
Central
Nervous
System
Gynaecological
Haematological
Head and
Neck
Sarcoma
Skin
Upper
Gastrointestinal
Urological
Other
Total
Q1
91%
68%
66%
72%
58%
68%
59%
72%
61%
84%
65%
76%
67%
73%
Q2
81%
74%
83%
81%
76%
76%
77%
73%
68%
76%
78%
78%
81%
78%
Q4
92%
74%
76%
86%
62%
70%
64%
75%
60%
90%
62%
82%
74%
79%
Q6
87%
83%
85%
85%
77%
77%
82%
85%
77%
84%
78%
80%
81%
83%
Q7
88%
88%
88%
88%
84%
83%
89%
85%
83%
85%
84%
87%
88%
87%
Q8
85%
87%
83%
84%
84%
79%
81%
80%
70%
69%
82%
87%
78%
84%
Q9
84%
79%
79%
81%
71%
76%
73%
80%
83%
78%
72%
79%
77%
79%
Q11
77%
76%
71%
69%
81%
64%
65%
65%
56%
55%
69%
65%
62%
70%
Q12
90%
85%
83%
84%
78%
82%
83%
85%
81%
85%
77%
80%
78%
84%
Q13
81%
78%
75%
80%
61%
73%
56%
77%
63%
81%
68%
75%
69%
75%
Q14
69%
62%
57%
78%
32%
49%
66%
50%
34%
60%
48%
57%
48%
62%
Q15
89%
77%
83%
91%
94%
79%
78%
82%
83%
75%
84%
74%
74%
84%
Q16
75%
67%
73%
71%
75%
68%
65%
76%
73%
78%
65%
70%
69%
71%
Q17
77%
75%
80%
76%
75%
75%
72%
74%
77%
72%
75%
68%
67%
75%
Q18
88%
83%
83%
85%
73%
81%
79%
74%
67%
64%
81%
70%
74%
82%
Q19
58%
56%
55%
65%
64%
52%
52%
55%
58%
44%
49%
45%
46%
55%
123
Colorectal /
Lower
Gastrointestinal
Tumour Groups
Q20
74%
71%
72%
72%
Brain/
Central
Nervous
System
59%
Q21
96%
91%
93%
80%
Q22
80%
81%
75%
Q23
93%
92%
Q24
93%
Q25
Breast
Lung
Prostate
Gynaecological
Haematological
Head and
Neck
Sarcoma
Skin
Upper
Gastrointestinal
Urological
Other
Total
73%
68%
70%
79%
75%
65%
68%
67%
71%
85%
91%
80%
90%
83%
79%
95%
70%
87%
88%
77%
65%
78%
82%
64%
72%
83%
74%
80%
81%
78%
94%
92%
93%
93%
93%
85%
88%
93%
91%
92%
89%
92%
92%
90%
91%
92%
93%
94%
86%
87%
95%
89%
91%
93%
92%
78%
74%
80%
54%
72%
62%
53%
69%
55%
47%
79%
39%
66%
66%
Q26
82%
83%
82%
84%
56%
90%
84%
69%
75%
72%
81%
84%
85%
82%
Q27
94%
91%
96%
95%
88%
90%
95%
84%
92%
89%
94%
87%
92%
92%
Q28
94%
87%
87%
94%
82%
93%
93%
88%
91%
94%
86%
92%
90%
91%
Q29
66%
64%
67%
50%
80%
55%
56%
62%
55%
41%
65%
37%
51%
58%
Q30
24%
28%
30%
19%
25%
18%
25%
24%
10%
11%
26%
15%
17%
22%
Q31
77%
67%
71%
67%
74%
65%
69%
71%
65%
53%
70%
46%
63%
69%
Q32
72%
69%
73%
66%
83%
59%
76%
66%
56%
63%
73%
52%
61%
68%
Q33
46%
44%
62%
32%
62%
46%
45%
45%
50%
29%
50%
23%
47%
44%
Q34
38%
31%
31%
32%
27%
26%
26%
30%
20%
10%
19%
15%
27%
29%
Q35
61%
69%
62%
58%
38%
78%
73%
60%
64%
92%
57%
61%
74%
64%
Q37
89%
85%
87%
89%
85%
83%
82%
89%
91%
92%
86%
86%
86%
87%
Q38
76%
70%
67%
78%
44%
68%
54%
49%
43%
64%
74%
72%
61%
70%
124
Breast
Colorectal /
Lower
Gastrointestinal
Tumour Groups
Lung
Prostate
Brain/
Central
Nervous
System
Gynaecological
Haematological
Head and
Neck
Sarcoma
Skin
Upper
Gastrointestinal
Urological
Other
Total
Q39
79%
78%
82%
76%
59%
78%
73%
79%
84%
80%
79%
73%
80%
78%
Q41
55%
58%
54%
53%
46%
52%
61%
53%
53%
65%
58%
44%
46%
54%
Q42
82%
82%
77%
74%
82%
78%
81%
80%
83%
90%
77%
75%
81%
80%
Q43
89%
88%
79%
86%
79%
86%
84%
87%
90%
95%
85%
85%
79%
87%
Q44
90%
81%
75%
90%
68%
85%
78%
79%
85%
82%
81%
83%
83%
84%
Q45
66%
60%
53%
60%
56%
62%
63%
66%
53%
67%
61%
56%
65%
61%
Q46
80%
75%
68%
74%
62%
73%
76%
76%
79%
75%
74%
70%
71%
75%
Q47
77%
69%
72%
76%
67%
69%
77%
73%
77%
81%
71%
71%
72%
73%
Q48
89%
84%
81%
86%
81%
86%
87%
83%
95%
87%
85%
84%
87%
86%
Q49
69%
55%
52%
58%
63%
55%
53%
62%
71%
74%
60%
56%
59%
60%
Q50
92%
88%
88%
91%
86%
85%
85%
88%
88%
96%
87%
88%
88%
89%
Q51
87%
83%
75%
92%
86%
82%
76%
81%
83%
88%
83%
85%
79%
84%
Q52
57%
67%
65%
55%
64%
62%
63%
67%
53%
43%
76%
64%
59%
62%
Q53
86%
83%
74%
82%
89%
81%
79%
87%
85%
86%
86%
82%
87%
83%
Q54
95%
94%
93%
93%
93%
94%
90%
94%
90%
93%
96%
93%
96%
94%
Q55
67%
62%
62%
61%
56%
62%
62%
67%
71%
67%
67%
58%
61%
63%
Q56
89%
86%
77%
84%
91%
88%
85%
87%
97%
93%
82%
80%
85%
86%
125
Colorectal /
Lower
Gastrointestinal
Tumour Groups
Q57
88%
82%
83%
88%
Brain/
Central
Nervous
System
79%
Q58
86%
82%
68%
87%
Q59
93%
93%
90%
Q60
58%
59%
Q61
62%
Q62
Breast
Lung
Prostate
Gynaecological
Haematological
Head and
Neck
Sarcoma
Skin
Upper
Gastrointestinal
Urological
Other
Total
83%
84%
85%
95%
90%
82%
83%
87%
85%
58%
80%
81%
79%
67%
76%
78%
79%
74%
81%
92%
92%
89%
93%
91%
87%
95%
95%
86%
93%
92%
54%
59%
63%
50%
63%
62%
44%
57%
62%
49%
59%
57%
67%
57%
42%
56%
58%
53%
54%
67%
59%
63%
46%
67%
59%
79%
82%
76%
78%
78%
81%
81%
79%
77%
77%
75%
79%
74%
79%
Q63
83%
86%
84%
79%
61%
87%
83%
84%
87%
76%
80%
84%
83%
83%
Q64
81%
84%
84%
77%
68%
82%
85%
84%
83%
83%
83%
72%
79%
81%
Q65
71%
76%
77%
68%
70%
70%
76%
74%
80%
73%
72%
68%
71%
72%
Q67
97%
97%
96%
95%
100%
96%
98%
97%
93%
92%
94%
96%
96%
96%
Q68
94%
91%
89%
92%
85%
90%
91%
94%
84%
91%
90%
92%
93%
92%
Q69
68%
67%
69%
70%
60%
62%
64%
62%
63%
75%
69%
65%
67%
67%
Q70
67%
64%
69%
71%
55%
64%
64%
62%
58%
69%
61%
61%
60%
65%
Q72
87%
85%
90%
89%
76%
86%
89%
86%
82%
88%
80%
84%
84%
86%
Q73
80%
84%
76%
82%
76%
82%
83%
83%
80%
93%
79%
81%
77%
81%
Q74
91%
88%
89%
86%
94%
87%
91%
89%
89%
90%
88%
85%
87%
89%
126
9. Appendix B - Full Survey Results
This appendix sets out the full results from the 2013 Wales Cancer Patient
Experience Survey ordered in exactly the same way as in the survey questionnaire
sent to patients.



The results are shown firstly in absolute numbers then as percentages.
The percentages are calculated after excluding those patients who did not answer that
particular question. All percentages are rounded to the nearest whole number. When
added together, the percentages for all answers to a particular question may not total
exactly 100% because of this rounding.
On some questions there are also some figures which are italicised. The percentages on
these questions have been recalculated to exclude responses where the question was not
applicable to the patient’s circumstances or to remove neutral responses e.g. ‘don’t know’
or ‘can’t remember’. The italicised percentages will add up to 100%.
The 'Missing' figures show the number of patients who did not reply to a particular
question. In some cases, the ‘Missing’ figure is quite high because it includes patients
who did not answer that question or group of questions because it was not applicable to
their circumstances (e.g. question 6).
There are a number of questions which are ‘routed’ (i.e. where patients are directed to a
subsequent question depending on their answer to the lead question). Sometimes there
are conflicts in the answers that patients give to these questions and the data is corrected
to account for this. For example, if response option 2 in question 5 is ticked and the
patient goes on to answer questions 6 to 9, then any data between question 5 and
question 10 (where the patient was directed) will be deleted as these questions should not
have been answered by the patient.
127
SEEING YOUR GP
01
02
03
04
National
All
Before you were told you needed to go to hospital about cancer, how many
times did you see your GP (family doctor) about the health problem caused
by cancer?
None I did not see my GP before going to hospital
I saw my GP once
I saw my GP twice
I saw my GP 3 or 4 times
I saw my GP 5 or more times
Don't know / Can't say
Missing
1499
2889
1135
926
544
152
207
21%
53%
21%
17%
10%
2%
How do you feel about the length of time you had to wait before your first
appointment with a hospital doctor?
I was seen as soon as I thought was necessary
I should have been seen a bit sooner
I should have been seen a lot sooner
Missing
5520
839
685
308
78%
12%
10%
How long was it from the time you first thought something might be wrong
with you until you first saw a hospital doctor?
Less than 3 months
3-6 months
6-12 months
More than 12 months
Don't know / Can't remember
Missing
5081
1015
417
283
203
353
73%
15%
6%
4%
3%
Did your health get worse, get better or stay about the same while you
were waiting for your first appointment with a hospital doctor?
My health got worse
My health got better
My health stayed about the same
Missing
1462
28
5562
300
21%
0%
79%
128
DIAGNOSTIC TESTS
05
06
07
08
09
National
All
6114
837
401
88%
12%
Yes completely
Yes to some extent
No but I would have liked an explanation
I did not need an explanation
Don't know / Can't remember
Missing
4917
876
103
279
84
1093
83%
15%
2%
4%
1%
Beforehand, did a member of staff explain what would be done during the
test procedure(s)?
Yes completely
Yes to some extent
No but I would have liked an explanation
I did not need an explanation
Don't know / Can't remember
Missing
5293
702
75
154
55
1073
87%
12%
1%
2%
1%
Beforehand, were you given written information about your test(s)?
Yes and it was easy to understand
Yes but it was difficult to understand
No but I would have liked written information about the test(s)
I did not need written information
Don't know / Can't remember
Missing
3816
174
560
1214
474
1114
84%
4%
12%
19%
8%
4901
1124
140
69
43
1075
79%
18%
2%
1%
1%
In the last 12 months, have you had diagnostic test(s) for cancer such as an
endoscopy, biopsy, mammogram, or scan at one of the hospitals named in
the covering letter?
Yes
No
Missing
Beforehand, did a member of staff explain the purpose of the test(s)?
Were the results of the test(s) explained in a way you could understand?
Yes completely
Yes to some extent
No but I would have liked an explanation
I did not need an explanation
Don’t know / Can’t remember
Missing
129
FINDING OUT WHAT WAS WRONG WITH YOU
10
11
12
13
14
National
All
Who first told you that you had cancer?
A hospital doctor
A hospital nurse
A GP (family doctor)
Another health professional
A friend or relative
Nobody – I worked it out for myself
Missing
5911
338
491
265
12
124
211
83%
5%
7%
4%
0%
2%
When you were first told that you had cancer, had you been told you could
bring a family member or friend with you?
Yes
No
It was not necessary
I was told by phone or letter
Don’t know / Can’t remember
Missing
4200
1761
774
91
337
189
70%
30%
11%
1%
5%
How do you feel about the way you were told you had cancer?
It was done sensitively
It should have been done a bit more sensitively
It should have been done a lot more sensitively
Missing
6073
757
360
162
84%
11%
5%
Did you understand the explanation of what was wrong with you?
Yes I completely understood it
Yes I understood some of it
No I did not understand it
Can’t remember
Missing
5410
1625
146
56
115
75%
23%
2%
1%
When you were told you had cancer, were you given written information
about the type of cancer you had?
Yes and it was easy to understand
Yes but it was difficult to understand
No I was not given written information about the type of cancer I had
I did not need written information
Don’t know / Can’t remember
Missing
3765
347
1928
792
327
193
62%
6%
32%
11%
5%
130
DECIDING THE BEST TREATMENT FOR YOU
15
16
17
18
19
National
All
2290
430
4234
84%
16%
59%
210
188
3%
4333
1390
412
551
71%
23%
7%
8%
392
274
6%
Were the possible side effects of treatment(s) explained in a way you could
understand?
Yes definitely
Yes to some extent
No side effects were not explained
I did not need an explanation
Not sure / Can’t remember
Missing
5056
1368
343
284
96
205
75%
20%
5%
4%
1%
Before you started your treatment, were you given written information
about the side effects of treatment(s)?
Yes and it was easy to understand
Yes but it was difficult to understand
No I was not given written information
I did not need written information
Don’t know / can’t remember
Missing
5010
341
782
671
255
293
82%
6%
13%
10%
4%
Before you started your treatment, were you also told about any side
effects of the treatment that could affect you in the future rather than
straight away?
Yes definitely
Yes to some extent
No future side effects were not explained
I did not need an explanation
Not sure / can’t remember
Missing
3419
1535
1239
505
355
299
55%
25%
20%
7%
5%
Before your cancer treatment started, were you given a choice of different
types of treatment?
Yes
No but I would have liked a choice
I was not given a choice because only one type of treatment was suitable for
me
Not sure / Can’t remember
Missing
Do you think your views were taken into account when the team of doctors
and nurses caring for you were discussing which treatment you should
have?
Yes definitely
Yes to some extent
No my views were not taken into account
I didn't know my treatment was being discussed by a team of doctors /
nurses
Not sure / Can't remember
Missing
131
DECIDING THE BEST TREATMENT FOR YOU
20
Were you involved as much as you wanted to be in decisions about your
care and treatment?
Yes definitely
Yes to some extent
No but I would like to have been more involved
Not sure / Can't remember
Missing
National
All
4910
1591
401
174
276
71%
23%
6%
2%
132
CLINICAL NURSE SPECIALIST / KEY WORKER
21
22
23
24
25
26
27
National
All
Were you given the name of a Clinical Nurse Specialist who would be in
charge of your care?
Yes
No
Don’t know / Not sure
Missing
5012
663
215
1462
88%
12%
4%
How easy is it for you to contact your Clinical Nurse Specialist?
Easy
Sometimes easy sometimes difficult
Difficult
I have not tried to contact her/him
Missing
3635
876
126
389
2326
78%
19%
3%
8%
The last time you spoke to your Clinical Nurse Specialist, did she/he listen
carefully to you?
Yes definitely
Yes to some extent
No
Missing
4524
331
64
2433
92%
7%
1%
When you have important questions to ask your Clinical Nurse Specialist,
how often do you get answers you can understand?
All or most of the time
Some of the time
Rarely or never
I do not ask any questions
Missing
4189
315
60
392
2396
92%
7%
1%
8%
Were you given the name and contact details of your Key Worker?
Yes and this was not a CNS
Yes and this was my CNS
No I did not have anyone who was named my Key Worker
Don’t know / not sure
Missing
1792
2162
2059
737
602
30%
36%
34%
11%
How easy is it for you to contact your Key Worker?
Easy
Sometimes easy sometimes difficult
Difficult
I have not tried to contact her/him
Missing
1387
268
36
188
5473
82%
16%
2%
10%
The last time you spoke to your Key Worker, did she/he listen carefully to
you?
Yes definitely
Yes to some extent
No
Missing
1652
111
25
5564
92%
6%
1%
133
CLINICAL NURSE SPECIALIST / KEY WORKER
28
29
30
National
All
When you have important questions to ask your Key Worker, how often do
you get answers you can understand?
All or most of the time
Some of the time
Rarely or never
I do not ask any questions
Missing
1520
139
14
153
5526
91%
8%
1%
8%
Were you offered the opportunity to discuss your needs and concerns in
order to put together your care plan?
Yes
No
Don't know / can't remember
Missing
3242
2347
1022
741
58%
42%
15%
Have you been offered a written care plan?
Yes
No
Don't know / can't remember
Missing
1251
4328
988
785
22%
78%
15%
134
SUPPORT FOR PEOPLE WITH CANCER
31
32
33
34
35
National
All
Did hospital staff give you information about emotional support, such as
support or self-help groups for people with cancer?
Yes
Yes but I would have liked more information
No but I would have liked information
It was not necessary
Don’t know / can’t remember
Missing
3278
394
1099
1882
374
325
69%
8%
23%
27%
5%
Did hospital staff discuss with you or give you information about the impact
cancer could have on your work life or education?
Yes
No but I would have liked a discussion or information
It was not necessary / relevant to me
Don’t know / can’t remember
Missing
2208
1032
3416
330
366
68%
32%
49%
5%
Did hospital staff give you information about how to get financial help or
any benefits you might be entitled to?
Yes
Yes but I would have liked more information
No but I would have liked information
It was not necessary
Don’t know / can’t remember
Missing
1715
259
1918
2897
198
365
44%
7%
49%
41%
3%
Since your diagnosis, has anyone discussed with you whether you would
like to take part in cancer research?
Yes
No
Don't know / Can't remember
Missing
1913
4724
319
396
29%
71%
5%
If yes, did you then go on to take part in cancer research?
Yes
No
Missing
1219
678
5455
64%
36%
135
OPERATIONS
36
37
38
39
National
All
Yes
No
Missing
3827
3198
327
54%
46%
Before you had your operation, did a member of staff explain what would
be done during the operation?
Yes completely
Yes to some extent
No but I would have liked an explanation
I did not need an explanation
Don't know / Can't remember
Missing
3316
439
59
50
21
3467
87%
12%
2%
1%
1%
Yes and it was easy to understand
Yes but it was difficult to understand
No I was not given written information
I did not need written information
Don’t know / can’t remember
Missing
2072
118
764
637
253
3508
70%
4%
26%
17%
7%
After the operation, did a member of staff explain how it had gone in a way
you could understand?
Yes completely
Yes to some extent
No but I would have liked an explanation
I did not need an explanation
Missing
2952
652
191
81
3476
78%
17%
5%
2%
During the last 12 months, have you had an operation (such as removal of a
tumour or lump) at one of the hospitals named in the covering letter?
Beforehand, were you given written information about your operation?
136
HOSPITAL DOCTORS
40
41
42
43
44
45
National
All
Yes
No
Missing
4188
2817
347
60%
40%
During your treatment, were you able to talk to your doctor as often as you
would like?
All or most of the time
Some of the time
Rarely or never
I did not need to talk to my doctor
Missing
2065
1440
336
422
3089
54%
37%
9%
10%
When you had important questions to ask a doctor, how often did you get
answers that you could understand?
All or most of the time
Some of the time
Rarely or never
I did not ask any questions
Missing
3050
659
110
485
3048
80%
17%
3%
11%
Did you have confidence and trust in the doctors treating you?
In all of them
In some of them
In none of them
Missing
3740
562
18
3032
87%
13%
0%
Did doctors talk in front of you as if you weren't there?
Yes often
Yes sometimes
No
Missing
152
540
3625
3035
4%
13%
84%
If your family or someone else close to you wanted to talk to a doctor, did
they have enough opportunity to do so?
Yes definitely
Yes to some extent
No
No family or friends were involved
My family did not want or need information
I did not want my family or friends to talk to a doctor
Missing
2182
1075
294
243
340
163
3055
61%
30%
8%
6%
8%
4%
During the last 12 months, have you had an operation or stayed overnight
for cancer care at one of the hospitals named in the covering letter?
137
WARD NURSES
46
47
48
49
National
All
When you had important questions to ask a ward nurse, how often did you
get answers you could understand?
All or most of the time
Some of the time
Rarely or never
I did not ask any questions
Missing
2775
762
156
610
3049
75%
21%
4%
14%
Did you have confidence and trust in the ward nurses treating you?
In all of them
In some of them
In none of them
Missing
3153
1105
44
3050
73%
26%
1%
Did ward nurses talk in front of you as if you weren’t there?
Yes often
Yes sometimes
No
Missing
125
485
3687
3055
3%
11%
86%
In your opinion, were there enough nurses on duty to care for you in
hospital?
There were always or nearly always enough on duty
There were sometimes enough on duty
There were rarely or never enough on duty
Missing
2580
1229
478
3065
60%
29%
11%
138
HOSPITAL CARE AND TREATMENT
50
51
52
53
54
55
National
All
Often
Sometimes
Only once
Never
Missing
46
352
77
3821
3056
1%
8%
2%
89%
While you were in hospital, did it ever happen that one doctor or nurse said
one thing about your condition or treatment, and another said something
different?
Often
Sometimes
Only once
Never
Missing
60
389
236
3593
3074
1%
9%
6%
84%
While you were in hospital did the doctors and nurses ask you what name
you prefer to be called by?
Yes all of them did
Only some of them did
None of them did
Missing
2647
835
788
3082
62%
20%
18%
Were you given enough privacy when discussing your condition or
treatment?
Yes always
Yes sometimes
No
Missing
3592
540
173
3047
83%
13%
4%
Were you given enough privacy when being examined or treated?
Yes always
Yes sometimes
No
Missing
4046
224
45
3037
94%
5%
1%
Were you able to discuss any worries or fears with staff during your
hospital visit?
As much as I wanted
Most of the time
Some of the time
Not at all but would have liked to
I did not have any worries or fears
Missing
2258
775
385
148
720
3066
63%
22%
11%
4%
17%
While you were in hospital did you ever think that the doctors or nurses
were deliberately not telling you certain things that you wanted to know?
139
HOSPITAL CARE AND TREATMENT
56
57
58
59
60
National
All
Do you think the hospital staff did everything they could to help control
your pain?
All of the time
Some of the time
Not at all
I did not have any pain
Missing
3187
482
50
580
3053
86%
13%
1%
13%
Were you treated with respect and dignity by the doctors and nurses and
other hospital staff?
Always
Most of the time
Some of the time
Never
Missing
3660
544
105
10
3033
85%
13%
2%
0%
Were you given clear written information about what you should or should
not do after leaving hospital?
Yes
No
I did not need written information
Can't remember
Missing
2940
676
498
193
3045
81%
19%
12%
4%
Did hospital staff tell you who to contact if you were worried about your
condition or treatment after you left hospital?
Yes
No
Don’t know / Can’t remember
Missing
3771
348
183
3050
92%
8%
4%
Did the doctors or nurses give your family or someone close to you all the
information they needed to help care for you at home?
Yes definitely
Yes to some extent
No
No family or friends were involved
My family or friends did not want or need information
I did not want my family or friends to be given information
Missing
1996
820
683
239
391
106
3117
57%
23%
20%
6%
9%
3%
140
ARRANGING HOME SUPPORT
61
After leaving hospital, were you given enough care and help from health or
social services (For example, district nurses, home helps or
physiotherapists)?
Yes definitely
Yes to some extent
No
I did not need help from health or social services
Don't know / Can't remember
Missing
National
All
2305
794
806
2450
64
933
59%
20%
21%
38%
1%
141
HOSPITAL CARE AS A DAY PATIENT / OUTPATIENT
62
63
64
65
National
All
Did hospital staff do everything possible to control the side effects of
radiotherapy?
Yes definitely
Yes to some extent
No they could have done more
I have not had any side effects from radiotherapy
I have not had radiotherapy
Missing
2292
505
120
464
3275
696
79%
17%
4%
7%
49%
Did hospital staff do everything possible to control the side effects of
chemotherapy?
Yes definitely
Yes to some extent
No they could have done more
I have not had any side effects from chemotherapy
I have not had chemotherapy
Missing
2973
507
86
281
2797
708
83%
14%
2%
4%
42%
While you were being treated as an outpatient or day case, did hospital
staff do everything they could to help control your pain?
Yes definitely
Yes to some extent
No they could have done more
I did not have any pain
Missing
3148
599
128
2857
620
81%
15%
3%
42%
While you were being treated as an outpatient or day case, were you given
enough emotional support from hospital staff?
Yes definitely
Yes to some extent
No I would have liked more support
I did not need emotional support from staff
Missing
3414
950
354
2033
601
72%
20%
8%
30%
142
OUTPATIENTS APPOINTMENTS WITH DOCTORS
66
67
In the last 12 months, have you had an outpatients appointment with a
cancer doctor at one of the hospitals named in the covering letter?
Yes
No
Missing
National
All
6495
536
321
92%
8%
6118
240
244
750
96%
4%
4%
The last time you had an appointment with a cancer doctor, did they have
the right documents, such as medical notes, x-rays and test results?
Yes
No
Don’t know / Can’t remember
Missing
143
CARE FROM YOUR GENERAL PRACTICE
68
69
As far as you know, was your GP given enough information about your
condition and the treatment you had at the hospital?
Yes
No
Don’t know / Can’t remember
Missing
National
All
4874
440
1840
198
92%
8%
26%
3157
1046
515
2345
289
67%
22%
11%
33%
Do you think the GPs and nurses at your general practice did everything
they could to support you while you were having cancer treatment?
Yes definitely
Yes to some extent
No they could have done more
My general practice was not involved
Missing
144
YOUR OVERALL NHS CARE
70
National
All
4421
1666
568
126
364
207
65%
25%
8%
2%
5%
Physiotherapist
Missing
914
6438
12%
Occupational therapist (OT)
Missing
443
6909
6%
Dietician
Missing
1073
6279
15%
Speech and language therapist
Missing
180
7172
2%
Lymphoedema specialist
Missing
842
6510
11%
How much information were you given about your condition and
treatment?
Not enough
The right amount
Too much
Missing
790
5454
82
1026
12%
86%
1%
Sometimes people with cancer feel they are treated as “a set of cancer
symptoms”, rather than a whole person. In your NHS care over the last
year, did you feel like that?
Yes often
Yes sometimes
No
Missing
253
1050
5657
392
4%
15%
81%
Overall, how would you rate your care?
Excellent
Very good
Good
Fair
Poor
Missing
4093
2187
595
166
51
260
58%
31%
8%
2%
1%
Did the different people treating and caring for you (such as GP, hospital
doctors, hospital nurses, specialist nurses, community nurses) work well
together to give you the best possible care?
Yes always
Yes most of the time
Yes some of the time
No never
Don't know
Missing
71a Have you had treatment from any of the following for your cancer?
72
73
74
145
ABOUT YOU
75
76
77
78
National
All
Age:
16 - 25
26 - 35
36 - 50
51 - 65
66 - 75
76+
Missing
17
87
484
2090
2348
1550
776
0%
1%
7%
32%
36%
24%
Are you male or female?
Male
Female
Missing
3397
3785
170
47%
53%
Which of the following best describes your sexual orientation?
Heterosexual / straight (opposite sex)
Bisexual (both sexes)
Gay or Lesbian (same sex)
Other
Prefer not to answer
Missing
6595
19
27
30
222
459
96%
0%
0%
0%
3%
What is your main employment status?
Full time employment
Part time employment
Homemaker
Student (in education)
Retired
Unemployed – and seeking work
Unemployed – unable to work for health reasons
Other
Missing
1056
497
206
15
4608
36
494
174
266
15%
7%
3%
0%
65%
1%
7%
2%
Deafness or severe hearing impairment
Missing
852
6500
12%
Blindness or partially sighted
Missing
179
7173
2%
A long-standing physical condition
Missing
1291
6061
18%
A learning disability
Missing
31
7321
0%
A mental health condition
Missing
187
7165
3%
79a Do you have any of the following longstanding conditions?
146
ABOUT YOU
80
81
82
83
84
National
All
A long-standing illness such as HIV diabetes chronic heart disease or epilepsy
1023
14%
Missing
6329
No I do not have a longstanding condition
Missing
4082
3270
56%
How long is it since you were first treated for this cancer?
Less than 1 year
1 to 5 years
More than 5 years
Don't know / Can't remember
Missing
4267
2211
575
32
267
60%
31%
8%
0%
How has your cancer responded to treatment?
My cancer has responded fully to treatment
My cancer has been treated but is still present
My cancer has not been treated at all
My cancer has come back after it was originally treated
My original cancer responded but I now have a new cancer
I am not certain what is happening with my cancer
Missing
3223
1520
128
355
232
1277
617
48%
23%
2%
5%
3%
19%
Welsh
English
Other
Missing
246
6829
15
262
3%
96%
0%
Did you get the information you needed in your preferred language?
Yes completely
Yes to some extent
No
Don’t know / can’t remember
Missing
6749
266
76
25
236
95%
4%
1%
0%
6073
85%
1048
231
15%
What is your preferred language for receiving information and treatment?
Could we send you a survey in the future to ask about your health and
healthcare?
Yes and I understand that this does not mean that I would have to take part in
the future survey
No I would prefer you not to contact me again
Missing
147
ABOUT YOU
85
To which of these ethnic groups would you say you belong?
British
Irish
Any other White background
White and Black Caribbean
White and Black African
White and Asian
Any other mixed background
Indian
Pakistani
Bangladeshi
Any other Asian background
Caribbean
African
Any other Black background
Chinese
Any other ethnic group
Missing
National
All
6991
44
102
7
4
4
2
7
5
1
6
3
5
0
5
4
162
97%
1%
1%
0%
0%
0%
0%
0%
0%
0%
0%
0%
0%
0%
0%
0%
148