PATIENTS VIEWS ABOUT CANCER SERVICES IN SOUTH WEST WALES: PATIENT SATISFACTION SURVEY

PATIENTS VIEWS ABOUT CANCER SERVICES IN SOUTH WEST WALES: PATIENT SATISFACTION SURVEY ANALYSIS OF QUESTIONNAIRES BY NHS TRUST VOLUME 3 JANUARY 26

Acknowledgements This survey would not have been possible without the commitment of a number of people. The authors are grateful to all patients and carers who took part in the survey and completed the questionnaire. We also wish to thank all our colleagues who helped us to conduct the survey. Our gratitude in particular goes to all the members of the Clinical Research Unit at Morriston Hospital, Swansea, and the staff of the South West Wales Cancer Network. The questionnaire used was adopted from the template developed by the Eli Lilly National Clinical Audit Centre. Authors: Dr Saad Al-Ismail Glynis Tranter Kathie Wareham South West Wales Cancer Network Lead Clinician South West Wales Cancer Network Director Clinical Research Unit It is important to note that this report provides a detailed analysis of the response to all aspects of the questionnaire survey for each. More detailed information about the analysis of the questionnaires on a Network-wide basis can be found in Volume 1 and additional information about the qualitative research can be found in Volume 2.

CONTENTS Executive Summary 1 Section 1: Background and Introduction 2-4 1.1 Purpose 2 1.2 Background 2 1.3 Aim and objectives 2 1.4 Format of the Survey 2-4 Section 2: Methodology 4-5 2.1 Project initiation and management 4 2.2 Ethical review 4 2.3 Sample selection 4-5 2.4 Distribution of questionnaire 5 Section 3: Results 6-55 3.1 Ethnic Group 6-7 3.2 Residence of the patients 7 3.3 About your diagnosis 7 3.3.1 Types of cancer 7-8 3.4 Who gave the diagnosis 8 3.5 Time from treatment from diagnosis 9 3.6 Treatment received less than 6 months 9-1 3.7 Treatment received more than 6 months 1 3.8 Patients experience of primary care Before diagnosis 1 3.8.1 Visit to GP surgery 1-12 3.9 Patients experience with secondary care Clinic attended pre diagnosis 12-15 3.1 Patients views on how they were given the diagnosis 16-2 3.11 Treatment 3.11.1 Surgery 2-28 3.11.2 Radiotherapy 29-36 3.11.3 Chemotherapy 36-43 3.11.4 Follow-up 43-45 3.12 Overall Care 46-51 3:13 The views of the Carers 51-54 Section 4: Discussion 55-59 4.1 General 55-57 4.2 The experience with Primary Care 57 4.3 Experience with Secondary & Tertiary Care 57 4.4 Time to the first treatment 57-58 4.5 Treatment 58 4.6 Follow up 58 4.7 Overall care 58-59 4.8 Carers view 59 Section 5: Conclusions & recommendations 6

Executive Summary A comprehensive questionnaire in respect of patients and carers views of the process cancer patients go through was conducted in South West Wales during the period October 23 to August 24. The population surveyed were patients attending the following s: Swansea, Bro Morgannwg, Pembrokeshire and Derwen, Ceredigion and Mid Wales and Carmarthenshire. A total of 115 questionnaires were distributed and 553 (5) were returned. The respondents were 34 females and 213 males with a median age of 66 years. The cancer diagnoses included breast, upper and lower gastrointestinal, lung, gynaecological, urological and haematological cancers. The survey demonstrated that the views of patients and carers of cancer services in South West Wales are generally favourable but there are several areas that need improvement. It is interesting that comparing some measured parameters from this survey to that conducted in England revealed very similar results. However, it must be emphasised that the survey in England preceded this survey by four years and major improvements in England have been achieved since 1999. Modernisation and additional minimum resources which included the provision of written information packs for patients could address certain deficiencies highlighted by the survey. However, others including unacceptable waiting time to diagnosis and treatment will have resource implications that need to be addressed by commissioners. This survey provided a baseline to measure improvement of cancer services in the future. There is also a need to offer all patients and carers opportunity to register their views of the cancer services provided in the network throughout the patient journey and provide regular monitoring of the services from the patients perspectives. This would be a stimulus for quality improvement. South West Wales Cancer Network 1

SECTION 1: BACKGROUND & INTRODUCTION 1.1 Purpose This was the first comprehensive survey of its kind to be conducted for the population in south west Wales. This report provides detailed analysis of the questionnaires on an individual basis. This report should be read in conjunction with Volumes 1& 2 which provide a network overview of the analysis of the questionnaires as well as the comments made by patients and their carers. 1.2 Background Patients satisfaction plays a vital role in achieving effective health care. Satisfaction influences patients behaviour toward their health, compliance with their treatment and subsequent health outcome 1. By assessing the patients evaluation of a health service, the health care professionals can gain information on both the provision of a service and the effect it has on patients 2. 1.3 Aims And Objectives The aim of this survey was to gather opinion of patients in the South West Wales Cancer Network area about the care received during their experiences with cancer. The survey assessed how well standards were met for services provided in primary care as well as by the specialist cancer teams in the hospital setting. In particular, the survey focused on the breaking of bad news, information given about the diagnosis, patient centred care, side effects of proposed treatment and support at the time of consultation. The survey addressed the overall care, the availability of written information about the medical conditions and the treatment as well as the information about the support and self help groups given to the patients. The questionnaire included a section that ensured that carers could also record their opinions. 1.4 Format Of The Survey The questionnaire was adopted from a format developed by the Eli Lilly National Clinical Audit Centre. The questionnaire comprised six sections and information provided as follows: 1 General Demographic Section: Patient information which included details of the type of cancer and general questions about their diagnoses and treatment. 1 Westbrook,J.I (1993). Patient satisfaction: methodological issues and research findings. Australian Health Review, 16(1), 75-88 2 Bowling,A. (1997). Research methods in health: Investigating health and health services. Open University press. Buckingham South West Wales Cancer Network 2

2 Diagnosis: More detailed questions were asked about the diagnosis, how it was approached by the GP, the patient experience during the diagnostic tests, the gap between referral and the diagnosis and the way in which the diagnosis was given to the patients. Questions were also asked about written information and the patient's perception about the time between the diagnosis and treatment and whether they felt it was too long. 3 Treatment: Questions related to the different types of treatment the patient received and whether there were adequate explanations and also, and how sensitive the staff were to the needs of the patients and their carers. 4 Follow-up visits: The patient's experience during follow-up appointments were surveyed: whether they felt they were given enough information; and the time they had to wait during these visits. 5 Overall Care: This assessed overall experience of the patient, particularly during the last six months of their management leading to the time of the survey. 6 Opinion of Carer: Carers' of the patient were asked for their opinion about the services provided by the department and opportunities given to the carer to assist in the care and management of the patient. The questionnaire was designed for use either as a complete unit or in separate sections, however, two of the sections should always be used. These include: Section 1 which covered the patient demography, diagnosis and treatment; Section 5 which asked about overall care. The choice on the total number of sections to be used will be dependent upon the range of services being offered. For the purpose of this survey, one modification from the original template ensured all patients currently receiving treatment as well as those who had received treatment for cancer over the last three years, were included. In view of the fact many patients with cancer require long term care, limiting the survey to those patients diagnosed and treated within the six-month South West Wales Cancer Network 3

period leading up to the survey, would have probably excluded many patients with cancers. In particular, this would have included patients with malignancies requiring long-term interventions. In addition to the questions, patients and carers were given the opportunity to express their opinion about other issues in the free-text sections following each part of the questionnaire: the emerging issues are summarised a separate report. The questionnaire was designed in such a way that in any one section there were negative as well as positive questions about the services received. This prevented patients ticking the same column every time. The response to each section was graded into: strongly agree, agree, neutral, disagree and strongly disagree. There was also a tick-box for questions which did not apply to a particular patient. A mathematical formula was designed to calculate a score for each section of the questionnaire. SECTION 2: METHODOLOGY 2.1 Project initiation and management A pilot study, using the questionnaire, was undertaken within the haematology department, Swansea. The purpose of the pilot was to assess whether patients and carers would be able to complete such a comprehensive survey in the different aspects of patients care. The results of the pilot study were positive. The survey was then discussed and endorsed by the South West Wales Cancer Network Advisory Group and Network Board. All Chief Executives supported the need to undertake the survey. A letter explaining the purpose and content of the survey, aims and objectives together with a copy of the questionnaire were forwarded to all Chief Executives, Cancer Lead Clinicians and Chairs of the Site Specific Cancer Groups within the Network. Colleagues were asked to discuss the survey with multidisciplinary team members and provide feedback and comments to the Network Lead Clinician. The survey was funded by the network and the Clinical Research Unit were commissioned to undertake and project manage the process. 2.2 Ethical review The survey was discussed with the local research ethics committee and they confirmed that a review was not required as it in no way changed any aspect of the patients management and patients were under no obligation to complete the questionnaire. 2.3 Questionnaire and sample selection The questionnaire, was prepared, printed and delivered to the Clinical Research Unit together with prepaid envelopes for the return of the questionnaire. The questionnaire was available in both English and Welsh South West Wales Cancer Network 4

and was distributed to each of the s in the South West Wales Cancer Network area. This included Swansea, Bro Morgannwg, Pembrokeshire and Derwen, Ceredigion and Mid Wales and Carmarthenshire s. Patients were selected at random and in small departments, all eligible patients were invited to participate. Patients were considered eligible if they had received the diagnosis and treatment for cancer within the three years prior to the study. 2.4 Distribution of the questionnaire Questionnaires were either handed out or posted to individual patients who were diagnosed and/or treated for cancer in South West Wales within the past three years. Initially, the plan was to hand out most of the questionnaires either when the patients attended the hospital, clinic or as a day case visit. This, however, was not feasible in a number of departments and questionnaires were posted to patients home address. A covering letter explained the aim of survey to patients and carers, and also pointed out the issues around anonymity and the fact that the questionnaire would be analysed independently by the Clinical Research Unit. Patients and carers who were interested to receive a hard copy of the results of the survey were asked to send their details to the Clinical Research Unit. South West Wales Cancer Network 5

SECTION 3: RESULTS OF THE SURVEY The survey commenced during October 23 with the final set of questionnaires distributed in August 24. A total of 115 questionnaires were distributed, of these 495 questionnaires were handed to patients, and 61 were posted to their home address. The number of questionnaires distributed in each are illustrated in Table 1 below. Table 1: distribution of questionnaires Handed out Posted Total Number returned 1 181 288 469 29 2 114 114 59 3 2 2 1 4 171 171 115 5 151 151 7 A total of 553 questionnaires were returned, 34 were from female patients and 213 from male patients. The median age of respondents was 66 years and the age range 26 91 years with a mode of 73 years. Table 2 below illustrates the demography of respondents together with details of the timeframe of treatment relative to the survey, on an individual Trust basis. Table 2: Demographics/timeframe of treatment in respect of survey by Description Trust 1 Trust 2 Trust 3 Trust 4 Trust 5 Number 29 59 1 115 7 Sex Females Males 91 118 41 18 75 25 79 36 54 16 Median age (range) 68 yr (3 9yr) 63 yr (36 91 yr) 68 yr (39 9y r) 69 yr (26 91 yr 61 yr (35 84yr) Treatment 14 31 35 49 32 < 6 months Current 7 = yes 15 = yes 25 = yes 37 = yes 33 = yes Treatment Treatment > 6 months 132 34 82 75 52 NB A number of patients ticked both groups i.e. within last 6 months and more than six months ago. This could be attributable to a patient having more than one surgical procedure. 3.1 Ethnic Group As can be seen from Table 3 below, most respondents were white. Details by respective Trust are illustrated in Table 3 overleaf. South West Wales Cancer Network 6

Table 3: Details of ethnic origins by Trust 1 Trust 2 Trust 3 Trust 4 Trust 5 Ethnic group N = 29 N =59 N = 1 N 115 N = 7 White 23 1 1 N = 113 1 (97) (98) Indian 1 Chinese 1 Pakistani 1 Italian 1 Not known 2 2 3.2 Residence of patients responding to the survey Figure 1 below, illustrates the whether the place of residence for respondents was urban or rural, on a Trust basis. Location of respondents 1 9 8 7 6 5 4 3 2 1 (All = combined 5 Trusts data) Urban Rural 3.3 About your diagnosis Respondents were asked to provide information about the type of cancer for which they had received treatment. 3.3.1 Types of cancer Table 4 overleaf illustrates the types of cancers reported by respondents. Table 5 overleaf illustrates the number of cancer types by. South West Wales Cancer Network 7

Table 4: Cancer type and number of patients Cancer type Number of patients Breast 192 Gastro-intestinal tract 136 Lung 67 Prostate 41 Gynaecological 39 Bladder/kidney 16 Unknown 1 Haematological 23 Other (see table 4a) 6 Throat/mouth 23 Total 553 Table 5: Description of cancer types by Cancer Trust 1 Trust 2 Trust 3 Trust 4 Trust 5 Breast 31 3 48 37 46 Lung 35 16 5 1 1 Lower GI 28 1 28 36 6 Upper GI 27 6 2 2 Gynaecological 17 3 11 8 Prostate 32 1 5 3 Bladder/kidney 8 2 6 Throat/mouth 23 Other 2 3 1 Haematological 1 1 3 5 13 Not known 5 2 3 Total 29 59 1 115 7 3.4 Who gave the diagnosis? Table 7 overleaf illustrates who gave the patients their cancer diagnosis, in most instances across all NHS trusts, the diagnosis was given by consultant medical staff. Table 7: Details of the grade of medical staff giving the diagnosis to patients Description Trust 1 Trust 2 Trust 3 Trust 4 Trust 5 Consultant 165 (8) 54 (92) 88 (88) 89 (78) 62 (89) Senior Registrar 27 (13) 3 (5) 7 (7) 14 (12) 5 (7) Junior doctor 1 (.5) 1 (1) 2 (2) General 11 (5) 1 (2) 2 (2) 5 (4) 2 (3) Practitioner Other 2 (1) 2 (2) 1 (1) Not known 3 (1) 1 (2) 4 (4) 1 (1) South West Wales Cancer Network 8

3.5 Time to treatment from diagnosis Figure 2 below illustrates the time lag between patients receiving their diagnosis and commencing initial treatment. As can be seen, 2 out of three of respondents received their treatment within one month of diagnosis, however, a number of patients had to wait more than three months for their treatment. Figure 2: Time to treatment from diagnosis for each number Time frame from diagnosis to treatment 25 2 15 1 5 Trust Details of treatments in the last 6 months and < 6 months ago < 2 weeks 2-4 weeks 4-12 weeks > 12 weeks not known 3.6 Treatment received less than 6 months prior to completing the questionnaire Patients were asked about the types of treatments and whether they received the treatment less than six months or more than six months prior to receiving the questionnaire. A total of 325 patients reported that having had treatment during this period and of these, for 18 patients treatment was ongoing. South West Wales Cancer Network 9

Table 8 below provides details of the treatment received by 295 patients. This included surgery, radiotherapy, chemotherapy or a combination of treatments within the six-month period prior to the survey. Table 8: Type of treatment patients received less than 6 months prior to survey: where completed by respondent Surgery Radiotherapy Chemotherapy Other/ combination 1 35 29 23 29 2 5 5 8 15 3 6 11 1 21 4 21 8 21 14 5 6 4 12 12 Total 73 57 74 91 A number of patients underwent a combination of treatments, that included surgery and radiotherapy and for some, this also included hormone suppression therapy. 3.7 Treatment received more than 6 months prior to the survey Details of treatments received more than six months prior to the survey are illustrated in Table 9 below: a total of 389 patients completed this section of the questionnaire. Table 9: Details of treatment patients received more than 6 months prior to survey NHS Surgery Radiotherapy Chemotherapy Other/ Total Trust combination 1 39 21 7 69 136 2 7 2 3 24 36 3 26 3 1 48 87 4 14 11 52 77 5 7 4 6 36 53 Totals 93 3 37 229 389 NB Of the 389 patients, 26 also reported having current therapy 3.8 Before diagnosis 3.8.1 Visit to GP surgery Figures 3 to 6 overleaf provide details of the patients experience from initial contact with their General Practitioner to first hospital appointment and the time the diagnosis was made. The majority of patients felt that their GP took their symptoms and worries seriously. South West Wales Cancer Network 1

Figure 3: The General Practitioner (GP) took my worries seriously 1 9 8 7 6 5 4 3 2 1 The GP took my worries seriously N/a Figure 4: The General Practitioner (GP) did not pick up my problems quickly enough GP did not pick up problem quickly enough 1 9 8 7 6 5 4 3 2 1 N/a It is interesting to note that in Trusts 2 and 5, more than 3 of the patients did not think the GP picked up their problems quickly enough South West Wales Cancer Network 11

Figure 5: The General Practitioner (GP)did not explain the reason for referral to the hospital GP did not explain reason for referral to hospital 1 8 6 4 2 Trust N/a Figure 6: The General Practitioner (GP) was quick to refer to the hospital GP was quick to refer to hospital 1 8 6 4 2 N/a 3.9 Clinic attended for Tests pre diagnosis Table 1 overleaf provides details of the initial hospital clinic attended by the patients for investigations and where diagnosis was made. South West Wales Cancer Network 12

Table 18: Details of initial clinic where diagnosis was made Hospital Clinic /other Number of patients Bronglais 17 Singleton 11 Morriston 67 Withybush 8 Neath and Port Talbot 33 Princess of Wales 28 Breast Test Wales 24 Prince Philip 24 Glangwilli 22 Mobile screening units 9 Velindre 2 Llandough 1 St Davids Clinic 1 University Hospital of Wales 1 Werndale 1 Alexander house 1 Total known 52 (91) Not reported 51 Figures 7 to 11 below and overleaf provide details of the respondents views on their experiences when attending clinics for tests. Figure 7: Had to wait too long for first outpatient department (OPD) appointment Had to wait too long for first OPD appointment 1 8 6 4 2 Trust N/a South West Wales Cancer Network 13

Figure 8: Respondents were told all they wanted to know about investigations Told all I wanted to know about tests 1 9 8 7 6 5 4 3 2 1 N/a Figure 9: Privacy in the outpatient clinic (OPD) when having investigations Would have preferred more privacy in OPD clinic when having tests 1 9 8 7 6 5 4 3 2 1 Trust N/a South West Wales Cancer Network 14

Figure 1: 1 9 8 7 6 5 4 3 2 1 Health care professionals/staff did not always recognise how anxious I was feeling Staff did not always recognise how anxious I was feeling Trust N/a Figure 11: Time waiting in the clinics while having their investigations Spent too much time waiting in clinic while having tests 1 9 8 7 6 5 4 3 2 1 Trust N/a As can be seen, most respondents were satisfied with their initial contact with service, however, approximately 6 in Trusts 2 and 4 and 1 to 15 in Trusts 1, 3 and 5 would have liked more privacy in the outpatient department while having their initial tests. South West Wales Cancer Network 15

3.1 Patients views how they were given the diagnosis Figures 12 to 19 provide details of the patients assessment about the ways in which information was provided about the diagnosis. The setting where a patient was informed of the diagnosis and the way the diagnosis was given, particularly to a patient with cancer, are very important and sensitive issues. As can be seen from figure 12 below, most patient felt they were given the diagnosis appropriately, however, approximately 1 in Trusts 1 and 2 felt that the diagnosis could have been given in a more sensitive manner. Figure 12: Sensitivity in giving the diagnosis The doctor could have given the diagnosis more sensitively 1 9 8 7 6 5 4 3 2 1 N/a The majority of respondents were given opportunity to take a carer with them when told the diagnosis (7 to 8). In Trust 1, approximately 15 of the respondents reported that they thought they waited too long for their diagnosis, however, the majority felt the diagnosis was given in a suitable place and explained in a way that they were able to understand. South West Wales Cancer Network 16

Figure 13: Given the opportunity to take a carer when diagnosis was received Not given opportunity to take a carer when receiving diagnosis 1 8 6 4 2 N/a Figure 14: Time waited for the diagnosis 1 9 8 7 6 5 4 3 2 1 Felt it was too long for diagnosis to be reached N/a South West Wales Cancer Network 17

Figure 15: Place where the diagnosis was given Could have been given diagnosis in a more suitable place 1 9 8 7 6 5 4 3 2 1 N/a Figure 16: Respondents thought the information about their diagnosis was provided in easy to understand terms 1 9 8 7 6 5 4 3 2 1 Diagnosis explained in easy to understand terms N/a South West Wales Cancer Network 18

Figure 17: Respondents thought they had been given adequate opportunity to discuss their concerns Given an opportunity to discuss concerns 1 9 8 7 6 5 4 3 2 1 N/a The majority of respondents in most Trusts thought they were given adequate opportunity to discuss their concerns whereas in trust 2, approximately 15 did not feel they had been given adequate opportunity. Figure 18: Information given about their care after leaving the clinic I was not given information about my care 1 9 8 7 6 5 4 3 2 1 N/a South West Wales Cancer Network 19

Figure 19: Time between the diagnosis and starting their treatment Felt that time between my diagnosis and treatment was too long 1 9 8 7 6 5 4 3 2 1 N/a 3.11 Treatment 3.11.1 Surgery A total of 369 patients reported that they had undergone surgery as part of their management, 241 underwent surgery within the last three years. Details of the hospital site where surgery was undertaken is illustrated in Tables 19 to 23 below and overleaf. Table 19: Site of hospital where patients underwent surgery for Swansea patients Hospital Number of patients n = 119 Singleton 65 Morriston 44 Prince Phillip 4 University Hospital of Wales 2 Hospital not stated 2 Queen Elizabeth Birmingham 1 Neath 1 South West Wales Cancer Network 2

Table 2: Site of hospital where patients underwent surgery for Bro Morgannwg patients Hospital Number of patients n = 35 Princess of Wales 11 Morriston 9 Neath and Port Talbot 5 Singleton 6 University Hospital of Wales 2 Llandough/Velindre 2 Table 21: Site of hospital where patients underwent surgery for Pembrokeshire & Derwen patients Hospital Number of patients n = 92 Withybush 83 University Hospital of Wales 4 Morriston 2 Singleton 1 Llandough 1 Cardiff BUPA 1 Table 22: Site of hospital where patients underwent surgery for Ceredigion & Mid Wales patients Hospital Number of patients n= 82 Bronglais 68 University Hospital of Wales 4 Singleton 3 Glangwilli 3 Prince Phillip 2 Llandudno 1 Morriston 1 Table 23: Site of hospital where patients underwent surgery for Carmarthenshire patients Hospital Number of patients n= 41 Prince Phillip 28 Glangwilli 9 Singleton 2 Withybush 1 Werndale 1 South West Wales Cancer Network 21

Figures 2 to 32 below and overleaf describe patients views about their experience whilst having surgical treatment. As can be seen, the majority of respondents felt the staff provided a detailed explanation about their treatment, however in Trusts 1, 2 and 3 approximately 2 of respondents reported that they did not understand everything when information was provided. In Trusts 2 and 3 approximately 2 of respondents reported that carers did not have opportunity to be involved in discussion about their treatment. In Trusts 2 and 3, approximately 2 to 3 of respondents thought staff did not always recognise the anxiety they were experiencing and in Trusts 1 and 2, more than 2 of the respondents would have preferred more privacy during their treatment. Figure 2: Detailed explanation about surgery Staff did not always explain everything All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 22

Figure 21: Understanding the information provided Sometimes didnt understand what I was told All 1 2 3 N/a 4 5 2 4 6 8 1 Figure 22: Respondents felt that their families/carers had opportunity to be involved in discussions Carers had opportunity to be included in discussions All 1 2 3 4 N/a 5 2 4 6 8 1 South West Wales Cancer Network 23

Figure 23: Recognising the anxiety patient experiencing Staff did not always recognise anxiety All 1 2 3 N/a 4 5 2 4 6 8 1 Figure 24: Privacy during the treatment Would have preferred more privacy All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 24

Figure 25: Given the opportunity to ask questions Not enough opportunity to ask questions All 1 2 3 N/a 4 5 2 4 6 8 1 The majority of respondents felt that they had opportunity to ask questions about their treatment, however, in Trust 2 approximately 15 did not think they had full explanation about the surgery and what it would involve. Figure 26: Explanation about the surgery and what it would involve All Given clear explanation about the surgery and what it would involve 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 25

Figure 27: Given explanation why surgery was chosen I was given clear explanation why surgery chosen All 1 2 3 4 N/a 5 2 4 6 8 1 The majority of respondents reported that they understood why the surgical intervention was chosen whilst in Trust 2, approximately 2 reported that they did not receive a clear explanation about the potential success of the surgical intervention. Figure 28: Respondents reported that they received a clear explanation about the potential success of the surgical intervention Clear explanation about success of surgery All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 26

Figure 29: Clear explanation about side effects and/or potential complications following surgery s Clear explanation about complications following surgery All 1 2 3 4 N/a 5 2 4 6 8 1 In Trust 2 and 3 15 to 2 of respondents reported that they did not receive a clear explanation about side effects and/or potential complications following surgery and approximately 25 in trust 2 reported that there was not enough opportunity to be involved in the decision-making about their treatments. Figure 3: Opportunity to be involved in the decision-making about their treatments Not given the opportunity to be involved in decisions about my treatment All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 27

Figure 31: Information about what to expect upon return home after discharge I would have liked more information requried on what to expect on returning home All 1 2 3 N/a 4 5 2 4 6 8 1 It is interesting to note that approximately 3 to 4 of respondents in Trusts 2, 3 and 4 would have liked more information about what to expect upon return home after discharge and 2 of respondents in Trusts 2 and 5 reported that not all support services required following discharge from hospital had been arranged. Figure 32: Respondents reported that all support services required following discharge from hospital had been arranged Services arranged for my discharge All 1 2 N/a 3 4 5 2 4 6 8 1 South West Wales Cancer Network 28

3.11.2 Radiotherapy Figures 33 to 46 illustrate patient s views on their experience whilst receiving radiotherapy. It is important to note that although this information is available on an individual Trust basis, the radiotherapy would have been provided at either Singleton Hospital Swansea or Velindre Hospital in Cardiff. Approximately 15 of respondents in trusts 1, 2 and 3 reported that the staff did not always provide a detailed explanation about the treatment and in Trusts 1 and 2 more than 2 did not always understand what they were told. In trusts 2 and 5, more than 3 of respondents thought their families/carers did not have opportunity to be involved in discussions about their treatment. Figure 33: Staff provided detailed explanation Staff did not always explain everything All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 29

Figure 34: Understanding the information provided I did not understand all I was told All 1 2 3 N/a 4 5 2 4 6 8 1 Figure 35: Respondents thought their families/carers had opportunity to be involved in discussions about their treatment Family involved in discussion about treatment All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 3

Figure 36: Privacy when receiving radiotherapy treatments Would have preferred more privacy when having treatment All 1 2 3 N/a 4 5 2 4 6 8 1 The majority of respondents thought there were adequate arrangements to maintain their privacy during treatment, however, in Trust 2 approximately 3 of respondents reported that staff involved in their care did not always recognise the anxiety they were experiencing. Figure 37: Staff recognised the anxiety the patient experienced Staff did not always recognise my anxiety All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 31

Figure 38: Time waiting for treatment in the Radiotherapy Department Too much time waiting in for radiotherapy treatment All 1 2 3 N/a 4 5 2 4 6 8 1 More than 3 of respondents from Trusts 3 and 4 reported that they spent too much time waiting for their radiotherapy treatment and in trusts 2, 3, 4 and 5 more than 35 of respondents stated that they did not have opportunity to visit the radiotherapy unit prior to their treatment. Figure 39: Respondents who felt they were given opportunity to visit the radiotherapy unit prior to treatment Opportunity to look around radiotherapy unit All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 32

Figure 4: Respondents stated that they were given a clear explanation about the treatment and what it would involve Clear explanation of what treatment would involve All 1 2 3 4 N/a 5 2 4 6 8 1 The majority of respondents reported that they had been given a clear explanation about their treatment and what it would involve, however, in Trust 2 approximately 2 of respondents reported that they had not been given a clear explanation about why radiotherapy was chosen as their treatment. Figure 41: Respondents thought they had been given a clear explanation about why radiotherapy was chosen as their treatment I was given clear explanation of why radiotherapy was chosen All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 33

Figure 42: Respondents were informed about the potential success of the radiotherapy treatment How successful radiotherapy was likely to be All 1 2 3 N/a 4 5 2 4 6 8 1 More than 3 of respondents in Trust 2 reported that they were not informed about the potential success of the radiotherapy treatment and approximately 4 did not think they had been given a detailed explanation about the possible side effects and long-term implications of the treatment. Figure 43: Respondents thought they had been given a detailed explanation about the possible side effects and long-term implications of the treatment Explanation of the possible side effects All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 34

Figure 44: Opportunity to be involved in decisions about the radiotherapy Not given enough opportunity to be involved in decisions All 1 2 3 4 N/a 5 2 4 6 8 1 In Trust 2, more than 3 of respondents were not given enough opportunity to be involved in decisions about the radiotherapy and 4 to 5 of respondents in all Trusts would have liked more information about what to expect when the radiotherapy treatment had been completed. Figure 45: Information about what to expect when the radiotherapy treatment had been completed Would have liked more information following radiotherapy All 1 2 3 N/a 4 5 2 4 6 8 1 South West Wales Cancer Network 35

Figure 46: Respondents thought that the hospital ensured all support services were in place upon their return home Services in place on return home All 1 2 3 4 N/a 5 2 4 6 8 1 In trust 5, approximately 5 of respondents did not have support services in place upon their return home, 4 of respondents in Trust 2 and more than 3 in Trust 1 supported this view. 3.11.3 Chemotherapy A total of 252 patients indicated that they had undergone a course of chemotherapy treatment, figures 47 t 6 overleaf describe respondents views on their experience during chemotherapy treatment. Figure 47: Health care professionals provided explanation about the procedures they were going to carry out Staff did not always explain everything they were going to do 1 9 8 7 6 5 4 3 2 1 N/a South West Wales Cancer Network 36

The majority of respondents understood what they were told by health care professionals and most that their carers were involved in discussions about their treatment. Figure 48: Understanding what they were told by health care professionals Didn t always understand what I was told 1 8 6 4 2 N/a Figure 49: Respondents felt that their carers were given opportunity to be involved in discussions about their treatment Carers included in discussions about treatment 1 8 6 4 2 N/a South West Wales Cancer Network 37

Figure 5: Privacy while receiving their chemotherapy treatment Would have preferred more privacy while having chemotherapy 1 9 8 7 6 5 4 3 2 1 N/a In Trust 2 approximately 15 of respondents would have preferred more privacy while having chemotherapy. Figure 51: Health care professionals recognise the anxiety of the patient 1 9 8 7 6 5 4 3 2 1 Staff did not always recognise how anxious I was feeling N/a In Trust 1 and 2, more than 2 of respondents felt that they spent too much time waiting for their treatment. South West Wales Cancer Network 38

Figure 52: 1 9 8 7 6 5 4 3 2 1 Time spend waiting for the treatment Had to spend too much time waiting around for treatment N/a Figure 53: Respondents were given opportunity to visit the chemotherapy unit prior to receiving their treatment 1 9 8 7 6 5 4 3 2 1 Opportunity to look visit chemotherpay unit NHS n/a In trust 1, 2, 4 and 5 some respondents reported that they did not have opportunity to visit the chemotherapy unit, however, the majority reported that they were provided with a clear explanation about the chemotherapy. South West Wales Cancer Network 39

Figure 54: Explanation what the chemotherapy would involve Given a clear explanation of what chemotherapy would involve 1 9 8 7 6 5 4 3 2 1 NHS N/a Figure 55: Respondents were given a clear explanation about why the chemotherapy was chosen Clear explanation of why chemotherapy was chosen 1 9 8 7 6 5 4 3 2 1 N/a In Trust 2, approximately 15 of respondents were not given a clear explanation about why the chemotherapy was chosen and 2 reported that they had not been given a clear explanation about the potential South West Wales Cancer Network 4

success of the chemotherapy. Approximately 15 of respondents in Trust 3 reported that they had not been given a clear explanation about the potential success of the chemotherapy. Figure 56: Respondents were given a clear explanation about the potential success of the chemotherapy Given clear explanation of how successful chemotherapy was likely to be 1 8 6 4 2 N/a Figure 57: Respondents were given a clear explanation about the side effects and long-term implications of the chemotherapy Explanation of side effects 1 8 6 4 2 N/a The majority of respondents were given a clear explanation about the side effects and long-term implications of the chemotherapy, however, in Trust 1 South West Wales Cancer Network 41

more than 15 reported that this was not the case. Figure 58: Opportunity to be involved in decisions about the chemotherapy treatment Not given enough opportunity to be involved in decisions 1 9 8 7 6 5 4 3 2 1 N/a Figure 59: Information about what to expect upon completion of the chemotherapy treatment Would have liked more information about what to expect on completion of chemotherapy 1 8 6 4 2 N/a It is apparent from Figure 59 above that much can be achieved to improve the provision of information for patients in most Trusts. As can be seen from Figure 6 below, 2 to 3 of respondents did not have support services in place after discharge from trusts 1, 2 and 5. South West Wales Cancer Network 42

Figure 6: Hospital ensured all support services had been arranged upon discharge, for example, community nursing services Support services arranged on discharge 1 9 8 7 6 5 4 3 2 1 N/a 3.11.4 Follow-up A total of 17 patients provided details of the last follow-up clinic attended and figures 61 to 65 below illustrate the views of patients in terms of overall experience about the management of their cancer. Figure 61: Concerns about how well medication was monitored I was worried about monitoring of my medication All 1 2 N/a 3 4 5 1 2 3 4 5 6 7 8 9 1 More than 3 of respondents in trust 2 reported that they were worried about how well their medication was monitored and more than 25 would have liked more support in coping with worries and anxieties during their follow-up visits. South West Wales Cancer Network 43

Figure 62: Support in coping with worries and anxieties during follow-up visits I would have liked more support in coping with my worry and anxiety during followup visits All 1 2 N/a 3 4 5 1 2 3 4 5 6 7 8 9 1 Figure 63: Unanswered questions after the follow-up visit Came away with unanswered questions after follow-up visit All 1 2 3 N/a 4 5 2 4 6 8 1 Approximately 3 of respondents in trust 2 reported that they were left with unanswered questions after their follow-up visit and approximately 2 in Trust 4 did not think the doctors and nurses were very sensitive in letting them know about any problems with their treatment and care. South West Wales Cancer Network 44

Figure 64: Respondents thought the doctors and nurses were very sensitive in letting them know about any problems with their treatment and care Sensitive handling of problems All 1 2 3 4 N/a 5 2 4 6 8 1 Figure 65: Did not have to wait too long for the follow-up visit to the department Didn t have to wait too long for my follow-up visit All 1 2 3 N/a 4 5 2 4 6 8 1 The majority of respondents did not feel they waited too long for their followup visit to the deartment, however, in trust 2 more than 3 felt they had waited too long. South West Wales Cancer Network 45

3:12 Overall Care Patients were asked to report their evaluation of the overall care they received during their cancer journey. Figures 66 to 75 in this section focus on the views of patients with regard to their overall care. Of the 511 patients who completed this section, Figures 66 and 67 below and overleaf illustrate that approximately 84 stated that they were able to contact the cancer team looking after them whenever they needed help and 78 felt they knew who was in charge of their care. Figure 66: Respondents were always able to contact health care staff when they needed help Always able to contact health care staff when I needed to 1 8 6 4 N/A 2 N/A South West Wales Cancer Network 46

Figure 67: Respondents knew who was in charge of their care It was sometimes difficult to know who was in charge of my care 8 7 6 5 4 3 2 1 N/A N/A As can be seen from Figure 68 below, only 14 of patients felt that during their care, they had been left in limbo. Figure 68: During their care, respondents did not feel they were left in limbo During my care I sometimes I felt I'd been left in limbo 8 7 6 5 4 3 2 1 N/A N/A As can be seen from Figure 69 overleaf, 74 of patients stated that they were given enough information about how their cancer was likely to progress, however, approximately 16 of patients felt that they were not well informed. South West Wales Cancer Network 47

Figure 69: Information given to patients about their cancer and how it was likely to progress was adequate Told as much as I wanted to know about the possible spread of the disease 8 7 6 5 4 3 2 N/A 1 N/A Figure 7 below illustrates that most patients (71) were given all the information they needed about the management of their symptoms during the treatment and follow-up periods. Figure 7: Information about the management of symptoms Told as much as I wanted to know about managing symptoms 8 7 6 5 4 3 2 1 N/A N/A The majority of patients (79) felt that the health care staff had the necessary information and test results needed in their clinical notes for the proper management of their illness: see Figure 71 overleaf. South West Wales Cancer Network 48

Figure 71: Staff involved in the care of the patient did not always have the information they needed Staff did not always had information and test results 8 7 6 5 4 3 2 1 N/A N/A As can be seen from Figure 72 below, only 21 of the patients were offered information about complimentary therapies. Figure 72: Information provided about complimentary therapies Staff offered information about complimentary therapies 6 5 4 3 2 1 N/A N/A Figure 73 overleaf illustrates that although 7 of patients were given written information to take home about their cancer and their treatment, 3 did not receive this information. South West Wales Cancer Network 49

Figure 73: Respondents were offered written information to take home about their illness and the treatment Offered written information about my illness and its treatment to take home 3 Yes No 7 Figure 74 illustrates that only 6 of patients were given information about support and self help groups. Figure 74: Patients were given information about self-help and support groups Given information about support and self help groups 4 Yes No 6 Of the patients who received written information, 92 felt that they received the information at the right time during their care. South West Wales Cancer Network 5

Figure 75: Respondents who thought that information was provided at the right time during their care Patients were given information at the right time 8 Yes No 92 3:13 Carers Of the total number of questionnaires returned, 246 (45) included completed questionnaires from the respective carer. Table 24 below illustrates the relationship of the carer to the patient. Table 24: Carers who completed the questionnaire and their relationship to the patient Carer Number Wife 92 Husband 68 Partner 39 Daughter 25 Other family members 15 Friends 5 Home care services 1 Not known 1 Total 246 Figures 76 to 81 illustrate the experience of the services provided from the carers perspective. Slightly more than half of the carers (52) who completed the questionnaire said they were given information about selfhelp and support groups: see Figure 76 overleaf. South West Wales Cancer Network 51

Figure 76: Given all the information needed about self-help and support groups 6 5 4 3 2 1 N/A N/A Whilst 56 of the patients felt that they were given the opportunity to speak to doctors or nurses on their own Figure 77 below illustrates that 33 of the carers did not have opportunity to speak to health care workers on their own: there was no scope within the questionnaire to identify the reasons for this. Figure 77: Not given adequate opportunity to speak to the doctors and/or nurses on my own 6 5 4 3 2 N/A 1 N/A South West Wales Cancer Network 52

Figure 78 below illustrates that half of the carers (5) felt that they had enough help to deal with their concerns and worries. Figure 78: Would have liked more help in coping with my worries 5 4 3 2 1 N/A N/A Figure 79 below illustrates that carers received adequate information about what to expect when caring for the patient. Figure 79: Would have liked more information about what to expect when caring for the patient 5 4 3 2 1 N/A N/A Approximately one in four carers felt that they had not been given enough opportunity to be involved in decisions about the patient s care: see Figure 8 overleaf. South West Wales Cancer Network 53

Figure 8: Not given enough opportunity to be involved in decisions about the patient's care 7 6 5 4 3 2 1 N/A N/A As can be seen from Figure 81 below, a number of carers (18) did not feel that the cancer care staff understood how they felt as carers. Figure 81: Hospital staff did understand how I felt as a carer 6 5 4 3 2 N/A 1 N/A South West Wales Cancer Network 54

SECTION 4: DISCUSSION The broad aim of the cancer site specific multidisciplinary teams (MDTs) in Wales is to ensure that cancer patients receive the appropriate professional support and care as well as the best treatment available. The professional aspect and the quality of the service delivered by the multidisciplinary teams were assessed on annual basis and monitored against the all-wales Cancer Services Co-ordinating Group minimum standards. This monitoring was undertaken for all nine site specific cancers as well as palliative care. The need to seek patients and carers views of the cancer services provided in South West Wales are equally important in assessing and monitoring the cancer services delivered in the area and to provide a stimulus for quality improvement. This survey provided a baseline for measuring future improvements in cancer services in south west Wales. Patient satisfaction also plays a vital role in achieving effective healthcare as it influences the patient behaviour towards their health, compliance with treatment and subsequent health outcome. 4.1 General The questionnaire format adopted in the current survey was chosen because it provided a comprehensive assessment of all aspects of cancer care. A selection of open and closed questions were used in the survey. Closed questions are useful in obtaining specific details about the patient. Direct open-ended questions are particularly important in gaining more subjective information such as the patients feelings about the service. Furthermore, direct open-ended questions have been shown to encourage patients to critically evaluate their medical care and therefore elicit more information. The effectiveness of the questionnaire in assessing the patients' view of the service was piloted within the Haematology Department at the Swansea NHS Trust. The pilot proved to be highly efficacious. The survey was discussed with clinicians and members of the South West Wales Network Advisory Group, which included representation from all cancer teams in South West Wales as well as the Network Advisory Board. The survey was fully supported in every forum it was discussed. It was anticipated that Lead Clinicians in each of the s, with the cancer multidisciplinary teams, would convey the information about the survey to members of the MDTs throughout the network. Despite the thorough preparation for the survey, when the questionnaire was ready for distribution in October 23, there were a number of obstacles to overcome. For example, some of the consultant medical staff objected to the fact that the Clinical Research Unit would contact patients under their care to elicit the patients' views of the services. Also, nursing staff agreed to hand out the questionnaires to the patients, however, a number were not fully committed to this process which meant that only few questionnaires were handed out to patients. Despite numerous contacts and discussion with individual clinicians, these issues took time to resolve. South West Wales Cancer Network 55

During the survey, the Clinical Research Unit team established that the information provided on eligibility of patients for the survey was, on occasion outdated, as several of the names submitted by the Cancer Information Office in one Trust, were of patients who did not survive their disease and were already deceased by the time the survey was due to start. Three patients were unaware of the diagnosis several months after the diagnosis was made. With the limited budget available to conduct the survey, a limited number of questionnaires were distributed. The ideal survey of patients and carers views would be of a service offered to every patient who used the healthcare system and was willing to register their views. It will be important to ensure that where a negative experience was reported, regardless of the small numbers involved, this will be explored in more detail to ensure that these experiences will not be repeated in the future. Patients, particularly those with the diagnosis of cancer, have more than enough pressure to deal with in relation to their diagnosis and in certain cancers, have a very short survival time. It is essential therefore, that the cancer journey from the time of presentation through the diagnosis and treatment should be made as smooth as possible. A more detailed analysis of the individual comments provided by both patients and their carers can be found in Volume 2 of this report. It has been shown that the best response to a healthcare survey is when the questionnaire was given directly to the patients and carers along with a stamped addressed envelope for return. In view of the limited resources available for this survey it was not practical to proceed in this way. Of the 1,15 questionnaires that were distributed 495 were handed to the patients and 61 were posted to their home address. The questionnaires were returned, using the stamped addressed envelope, to the Clinical Research Unit. A return rate of 5 is less than ideal, however, as the survey was anonymous it was not possible to pursue any unreturned questionnaires. It was interesting that in one of the s where the survey was well supported by the health care workers and the cancer team, the return rate was 64 compared to the 44 from the with the lowest return rate. The survey was designed on a scale to provide an overview of patients opinion of the cancer services received throughout South West Wales as well as feedback results to each participating Trust on the services provided by these Trusts. Of the six main types of cancer surveyed, patients with breast cancer formed the largest group, followed by gastrointestinal (both upper and lower gastrointestinal) cancer and then lung cancer. The results proved that the experiences of most breast cancer patients were better than those of other cancer types. This is hardly surprising as breast cancer had the best resources and health support teams. Approximately 99 of the patients surveyed were white with only 1 being of a different ethnic group. The survey did not ask whether the patient was welsh-speaking, however, none of the patients requested the Welsh language version of the questionnaire. Approximately 58 of the patients South West Wales Cancer Network 56