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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