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Wales Cancer Patient Experience Survey 2013 Hywel Dda University Health Published January 2014 The Wales Cancer Patient Experience Survey was undertaken by Quality Health on behalf of the Welsh Government and Macmillan Cancer Support

Hywel Dda University Health Introduction The Wales Cancer Patient Experience Survey 2013 (CPES) is designed to monitor national progress on cancer care. The survey is congruent with the Welsh Government's 'Together For Health: Cancer Delivery Plan for the NHS 2016' and measures progress from the patient's point of view against the objectives of the Cancer Delivery Plan. The CPES provides information which can be used to drive local quality improvements, both by Health s/trust and by planners, and is consistent with the objectives of NHS policy in Wales. Executive Summary The results for the Hywel Dda University Health show the following key points: Key worker/clinical Nurse Specialists: High score for patients having a Clinical Nurse Specialist (85%), but lower than the all-wales average (88%). High scores for being able to contact the CNS (79%), for the CNS listening carefully (90%) and for getting understandable answers to questions posed by the patient (91%). Fewer patients had a Key Worker (58%) than had a CNS (85%), and the number of patients having a Key Worker is the lowest score for any of the Wales Health s. High scores for being able to contact Key Workers (84%), Key Workers listening carefully (93%), and for getting understandable answers to questions posed (92%). Information and Support: Patients gave high scores for information on purpose of tests (81%); what would be done during tests (85%) and written information on tests (83%). 84% of patients said they were told sensitively they had cancer. 39% of patients said they were not given written information about the type of cancer they had or said it was difficult to understand. 81% of patients were given a choice of treatment, where this was possible. 79% of patients were given written information about the side effects of treatment but only 51% were given information on any long term side effects that may exist. 66% of patients at Hywel Dda did not receive information about financial help or benefits they may be entitled to or only did so to some extent. Only 24% of patients said taking part in cancer research was discussed with them compared to 29% in Wales as a whole. Information pre-operatively about what would be done (87% given an explanation) was given more frequently than was information about how the operation had actually gone (77% given explanation). 80% of patients were given clear written information about what they should and should not do after leaving hospital. Assessment and Care planning: 52% of patients were given an opportunity to discuss their needs and concerns about a care plan, but only 20% were actually offered a written care plan. 2

Hywel Dda University Health Executive Summary (continued) Transition point: from hospital treatment to cancer care in the community 47% of patients said their families/those close to them did not get enough information about how to look after them post discharge or only did so to some extent. 38% of patients who needed it said that they were not given enough help from health and social services post discharge or only were to some extent. 92% of patients said their GP was given enough information about their condition and the treatment they had had; but far fewer patients said their GP practice did everything they could to support them whilst they were having treatment (70%). Variation between Health scores and the all-wales scores: Scores given by patients at Hywel Dda are statistically significantly higher than the all-wales figure on getting answers to important questions from ward nurses; and being asked what name they preferred to be called by. Scores given by patients at Hywel Dda are statistically significantly lower than the all-wales figure on explaining the purpose of tests; the patients views being taken in to account when decisions were being made about treatment; explaining side effects of treatment, and long term side effects; being told the name of a CNS who would be in charge of their care; being given the name of a Key Worker; being offered the opportunity to discuss their needs in order to put together a care plan; being given information about emotional support, through support groups etc; being given information about any financial help or benefits that may be available; and whether the patient was asked if they would like to take part in cancer research. Variation between hospitals within the : Scores given by patients at Bronglais Hospital are statistically significantly higher than the all- Wales figure on 3 questions, and lower on 9 questions. Scores given by patients at Glangwili Hospital are statistically significantly higher than the all- Wales figure on 1 question and lower on 21 questions. Scores given by patients at Prince Phillip Hospital are statistically significantly higher than the all-wales figure on 6 questions and lower on 2 questions. Scores given by patients at the Withybush Hospital are statistically significantly higher than the all-wales figure on 6 questions and lower on 1 question. Variation in scores between tumour groups: There is a pattern of lower scores on some questions in the Lung, Head and Neck and "other cancers" tumour groups. There are gaps in CNS cover in the Prostate, Gynaecology, Haematology and Head and Neck tumour groups. There are gaps in Key Worker coverage in the Prostate, Gynaecology, Upper GI, and Urology tumour groups. 3

Hywel Dda University Health Executive Summary (continued) Key Strengths identified at level: Information on tests was given to high numbers of patients - 80% or more on 3 of 4 questions. 84% of patients were told sensitively they had cancer. 81% of patients were given a choice of treatment, where this was possible. Written information on the side effects of treatment was given to 79% of patients. 85% of patients were given the name of a Clinical Nurse Specialist who would be in charge of their care, and over 90% of patients said the CNS listened carefully to them and gave understandable answers to questions; Key Workers, where they were notified to the patient, were also said to listen carefully (93%) and give understandable answers (92%). 87% of patients said they had complete explanations of what would be done in respect of the operation they were having. Scores for doctors were high with 84% of patients having confidence and trust, 79% getting understandable answers to questions and 81% saying Doctors did not talk in front of patients as if they were not there. 84% of patients said nurses did not to talk in front of them as if they were not there. 87% of patients did not believe that information was being withheld from them, and 82% said they did not receive conflicting information. High scores of over 80% were achieved for privacy. Over 80% of patients said that staff did everything they could to control their pain, both in hospital and when being treated in a day case/outpatient setting. 85% of patients said they were always treated with respect and dignity. 80% of patients were told what to do/not to do when they left hospital. 90% 0f patients were told who to contact if they were concerned, after discharge. 85% of patients said staff did everything they could to control the side effects of chemotherapy. 95% of patients said that Doctors had the right notes and results with them when they were seen in outpatients. 92% patients said their GP was given enough information about their condition and treatment they had at the hospital. Overall scores were very high, with most patients saying that they were given the right amount of information (85%); that they were not treated as a set of cancer symptoms but were treated as a whole person (80%); and almost all patients said their care was excellent or very good (86%). Key weaknesses identified: Glangwili Hospital has a high number of scores below the all-wales average. Bronglais Hospital has a smaller number of scores below the all-wales average. 33% of patients were not given written information about the type of cancer they had. Only 51% of patients were definitely told about any potential long term side effects that might arise from treatment. Only 58% of patients were given contact details of key workers. Only 52% of patients were offered the opportunity to discuss their needs and concerns in order to put together a care plan. Only 20% of patients were offered a written care plan. 29% of patients were not given information about emotional support (e.g. through support groups) but would have liked some. Only 64% of patients were given information on how cancer might affect their work or education. 4

Hywel Dda University Health Executive Summary (continued) Key weaknesses identified (continued): Only 34% of patients were given information about how to access any financial help or benefits they might be entitled to. Only 55% of patients said they were able to talk to their doctor as often as they would like during their treatment; and 61% that families/carers were able to talk to a doctor when they needed to. Only 53% of patients said all the information on how to look after the patient on discharge was given to their family. Only 62% of patients said that they got enough support from health, social services post discharge. 5

Hywel Dda University Health Background Participating s and Trust All 7 Local Health s and 1 NHS Trust providing cancer services took part in the survey, accounting for all providers of adult cancer care in Wales. One Health (Powys Teaching) provides supportive and palliative care to patients but its residents are treated in hospitals located in other Health s in Wales and England for the acute stage of treatment. The level reports, of which this is one, report on a total of 23 hospitals and on each tumour group where there is sufficient data to do so. Patients selected to take part The survey included all adult patients (aged 16 and over) with a primary diagnosis of cancer who had been admitted to a Welsh NHS hospital as an inpatient or as a day case patient, and had been discharged between 1st June 2012 and 31st March 2013. The eligibility period for data capture purposes was designed to ensure that there was sufficient data from patients available for analysis in respect of most variables. Patients eligible for the survey were taken from Health s/trust patient administration systems; the inclusion criteria were that the patient had an International Classification of Disease (ICD10) code of C00-99 (excluding C44 and C84) or D05. The types of cancer patients included significant numbers with rarer cancers as well as patients in the Big 4 cancer groups i.e. breast, prostate, lung, and colorectal/lower GI. Health /Trust samples were checked rigorously for duplicates and patient lists were also deduplicated nationally to ensure that patients did not receive multiple copies of the questionnaire. Health /Trust samples were rigorously checked for deceased patients through the DBS system on at least three occasions during the fieldwork, to ensure that the numbers of deceased patients in samples was reduced to an absolute minimum. process was undertaken by Quality Health and was highly effective. Survey method naires were sent by post to patients home addresses following their discharge. naires were printed in both English and Welsh. Up to two reminders were sent to non-responders. A freepost envelope was included for their replies. Patients could call a free telephone line to ask questions, complete the questionnaire verbally, or to access an interpreting service. 6

Hywel Dda University Health Response rate A total of 10,945 patients who had received treatment for cancer during June 2012 to March 2013 were included in the national sample for the Wales Cancer Patient Experience Survey. These patients were allocated to 13 different cancer groups. 1594 eligible patients from this were sent a survey, and 1069 questionnaires were returned completed. represents a response rate of 69% once deceased patients and questionnaires returned undelivered were accounted for. The all-wales national response rate was 69% (7352 respondents). Percentage scores The questions in the cancer survey have been summarised as the percentage of patients who reported a positive experience. For example, percentage of patients who were given a complete explanation of their diagnostic tests and percentage of patients who said that nurses did NOT talk in front of them as if they were not there. Neutral responses, such as Don t know/can t remember and I did not need an explanation are not included in the denominator when computing the score. ensures that only those responses from patients requiring particular information or care are included when assessing responses and that any comparisons made between Health s/trust and between hospitals are made on a like for like basis. The higher the score, the better the Health /Trust's performance. Some scores represent performance across a pathway involving primary and community care in addition to acute care but represent important parts of the patient experience along the pathway of care. Low numbers of respondents and data not reported Some Health s/trust, and some hospitals within Health s/trust, have relatively small numbers of cancer patients, so the total number of respondents to the survey may be low despite the high response rate. Reports for these Health s/trust and hospitals have been completed in the normal way, but the results for them need to be treated with a greater degree of caution. It is important to recognise, however, that the low numbers of respondents in these Health s/trust and hospitals are simply the result of low numbers of cancer patients being treated. Patients were asked to complete the questionnaire in respect of the Health /Trust named on the covering letter. In those Health s/trust without a radiotherapy or chemotherapy unit, where patients reported receiving these treatments despite these instructions, responses have been suppressed to ensure that only responses relevant to the Health /Trust in question are reported. In almost all Health s/trust and hospitals, there were tumour groups where the number of respondents was less than 20; this is particularly true of tumour groups representing rarer cancers. Where the number of respondents in a particular tumour group is less than 20, we have used the convention of leaving the relevant cell blank. is further explained in the introduction to the tumour group tables in this report. Where the response group is fewer than 30, greater degrees of caution need to be used in interpreting the data. 7

Hywel Dda University Health Benchmark charts Percentage scores are displayed on benchmark bar charts in the following section. Each blue bar represents the range of results across all Health s/trust for one question. The black circle in the bar represents the score for this Health /Trust. The line on either side of the circle shows the 95% confidence interval (the amount of uncertainty surrounding the Health /Trust's score). The vertical line in the blue area indicates the national mean score on that question for all respondents in Wales Blue area representing range of scores Circle and horizontal line representing Health /Trust score and confidence interval Vertical line representing Welsh national mean score The table below each benchmarking chart shows the following: in column one, the Health /Trust score for each question; the second column displays the highest Health /Trust's score for this question and the third column displays the number of respondents who gave this answer for this question. Where no Health /Trust data or confidence interval is displayed on the range chart or in the tables for a particular question, there is insufficient data (below 20 respondents) to allow display. Confidence intervals will be wider where the number of respondents is smaller. Further information Full details of the survey method are in the National Report of the Wales Cancer Patient Experience Survey 2013, which will be available at www.quality-health.co.uk from late January 2014. Further details of survey development, nationally agreed methodology, and cognitive testing are also available at www.quality-health.co.uk. 8

Hywel Dda University Health Who responded to the survey at this Health /Trust? 1069 patients responded to the survey from the Health /Trust. The tables on this and the next page show the number of patients from each Hospital, the numbers of patients from each tumour group and the age and gender distribution of these patients. Respondents by Hospital Hospital Number of respondents Bronglais Hospital 156 Glangwili Hospital 341 Llandovery Hospital 1 Mynydd Mawr Hospital 1 Prince Philip Hospital 241 Ty Bryngwyn Hospice 4 Withybush Hospital 325 Total 1069 Respondents by tumour group Tumour Group Number of respondents* Breast 237 Colorectal / Lower Gastrointestinal 154 Lung 51 Prostate 174 Brain/Central Nervous System 3 Gynaecological 34 Haematological Head and Neck Sarcoma Skin Upper Gastrointestinal Urological Other 157 11 3 5 51 147 42 * These figures will not match the numerator for all questions in the comparisons by tumour group section of this report because not all questions were answered by all responders. 9

Hywel Dda University Health Age and Gender The survey asked respondents to give their year of birth. information has been amalgamated into 6 age bands. 106 respondents did not provide their gender and/or age. The age and gender distribution for the was as follows: 16-25 26-35 36-50 51-65 66-75 76+ Missing Total Men 1 3 11 118 202 141 51 527 Women 0 3 52 152 172 105 35 519 Missing 0 0 0 2 1 0 20 23 Total 1 6 63 272 375 246 106 1069 Sections in this Report report has three sections, as follows: 1. Overall Health /Trust level results for all tumour groups: compared to the all-wales results, this shows results for all tumour groups. These are displayed on charts showing the range of scores on each question, from the poorest score achieved by a Health /Trust to the highest score achieved on that question by a Health /Trust. The score for this Health /Trust is shown as a black circle with the confidence interval (the amount of uncertainty surrounding the Health /Trust's score on that question) shown as a black line. In the table under the charts, the score for the Health /Trust is compared to the all-wales score for all tumour groups for each question; and columns show the number of respondents for each Health /Trust for each question and whether the Health /Trust is statistically significantly different from the all-wales score. 2. Hospital level results within the Health /Trust: results are shown for each hospital where there are enough respondents, with the hospital named in the column above the tables; the percentage score for each hospital for each question is displayed in the table, using the all tumour group data. Where a hospital has a score which is statistically significantly different from the all-wales score for that question, it is highlighted in yellow. Hospitals with small numbers of respondents (usually smaller local hospitals) are not reported. 3. Tumour group results within the Heath /Trust: tables show the results for each tumour group for each question at Health /Trust level. A separate column shows the all-wales figure for each tumour group for each question. Cells representing tumour groups with numbers of respondents less than 20 are left blank. 10

Hywel Dda University Health results Seeing your GP Q1 Saw GP once / twice before being told had to go to hospital Q2 Patient thought they were seen as soon as necessary Q4 Patient's health got better or remained about the same while waiting 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q1 Q2 Q4 Saw GP once / twice before being told had to go to hospital Patient thought they were seen as soon as necessary Patient's health got better or remained about the same while waiting 2013 Score for this 2013 Score Number of respondents for this 73% 73% 831 78% 78% 1033 79% 79% 1026 Significantly Different from 11

Hywel Dda University Health Diagnostic tests Q6 Staff gave complete explanation of purpose of test(s) Q7 Staff explained completely what would be done during test Q8 Given easy to understand written information about test Q9 Given complete explanation of test results in understandable way 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q6 Q7 Q8 Q9 Staff gave complete explanation of purpose of test(s) Staff explained completely what would be done during test Given easy to understand written information about test Given complete explanation of test results in understandable way 2013 Score for this 2013 Score Number of respondents for this Significantly Different from 81% 83% 883 * 85% 87% 908 83% 84% 703 77% 79% 931 12

Hywel Dda University Health Finding out what was wrong with you Q11 Patient told they could bring a friend when first told they had cancer Q12 Patient felt they were told sensitively that they had cancer Q13 Patient completely understood the explanation of what was wrong Q14 Patient given easy to understand written information about the type of cancer they had 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q11 Q12 Patient told they could bring a friend when first told they had cancer Patient felt they were told sensitively that they had cancer 2013 Score for this 2013 Score Number of respondents for this 70% 70% 872 84% 84% 1045 Significantly Different from Q13 Patient completely understood the explanation of what was wrong 75% 75% 1047 Q14 Patient given easy to understand written information about the type of cancer they had 61% 62% 901 13

Hywel Dda University Health Deciding the best treatment for you Q15 Patient given a choice of different types of treatment Q16 Patient's views definitely taken into account by doctors and nurses discussing treatment Q17 Possible side effects explained in an understandable way Q18 Patient given easy to understand written information about side effects Q19 Patient definitely told about treatment side effects that could affect them in the future Q20 Patient definitely involved in decisions about care and treatment 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q15 Q16 Q17 Q18 Q19 Q20 Patient given a choice of different types of treatment Patient's views definitely taken into account by doctors and nurses discussing treatment Possible side effects explained in an understandable way Patient given easy to understand written information about side effects Patient definitely told about treatment side effects that could affect them in the future Patient definitely involved in decisions about care and treatment 2013 Score for this 2013 Score Number of respondents for this 81% 84% 392 Significantly Different from 67% 71% 885 * 71% 75% 984 * 79% 82% 880 51% 55% 893 * 69% 71% 1003 14

Hywel Dda University Health Clinical Nurse Specialist Q21 Patient given the name of the CNS in charge of their care Q22 Patient finds it easy to contact their CNS Q23 CNS definitely listened carefully the last time spoken to Q24 Get understandable answers to important questions all / most of the time 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q21 Q22 Q23 Q24 Patient given the name of the CNS in charge of their care Patient finds it easy to contact their CNS CNS definitely listened carefully the last time spoken to Get understandable answers to important questions all / most of the time 2013 Score for this 2013 Score Number of respondents for this Significantly Different from 85% 88% 786 * 79% 78% 625 90% 92% 650 91% 92% 617 15

Hywel Dda University Health Key Workers Q25 Patient given the name of the Key Worker in charge of their care Q26 Patient finds it easy to contact their Key Worker Q27 Key Worker definitely listened carefully the last time spoken to Q28 Get understandable answers to important questions all / most of the time Q29 Patient offered opportunity to discuss needs & concerns in order to put together a care plan Q30 Patient offered a written care plan 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q25 Q26 Q27 Q28 Q29 Patient given the name of the Key Worker in charge of their care Patient finds it easy to contact their Key Worker Key Worker definitely listened carefully the last time spoken to Get understandable answers to important questions all / most of the time Patient offered opportunity to discuss needs & concerns in order to put together a care plan 2013 Score for this 2013 Score Number of respondents for this Significantly Different from 58% 66% 867 * 84% 82% 208 93% 92% 217 92% 91% 202 52% 58% 812 * Q30 Patient offered a written care plan 20% 22% 821 16

Hywel Dda University Health Support for people with cancer Q31 Hospital staff gave information about emotional support Q32 Hospital staff gave information about impact cancer could have on work / education Q33 Hospital staff gave information on getting financial help 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q31 Q32 Q33 Hospital staff gave information about emotional support Hospital staff gave information about impact cancer could have on work / education Hospital staff gave information on getting financial help 2013 Score for this 2013 Score Number of respondents for this Significantly Different from 61% 69% 649 * 64% 68% 421 34% 44% 543 * 17

Hywel Dda University Health Cancer research Q34 Taking part in cancer research discussed with patient Q35 Patient has taken part in cancer research 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q34 Q35 Taking part in cancer research discussed with patient Patient has taken part in cancer research 2013 Score for this 2013 Score Number of respondents for this Significantly Different from 24% 29% 968 * 65% 64% 234 18

Hywel Dda University Health Operations Q37 Staff gave complete explanation of what would be done Q38 Patient given easy to understand written information about the operation Q39 Staff explained how operation had gone in understandable way 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q37 Q38 Q39 Staff gave complete explanation of what would be done Patient given easy to understand written information about the operation Staff explained how operation had gone in understandable way 2013 Score for this 2013 Score Number of respondents for this 87% 87% 508 66% 70% 397 77% 78% 509 Significantly Different from 19

Hywel Dda University Health Hospital Doctors Q41 Patient able to talk to a doctor as often as required Q42 Got understandable answers to important questions all / most of the time Q43 Patient had confidence and trust in all doctors treating them Q44 Doctors did not talk in front of patient as if they were not there Q45 Patient's family definitely had opportunity to talk to doctor 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q41 Q42 Q43 Q44 Q45 Patient able to talk to a doctor as often as required Got understandable answers to important questions all / most of the time Patient had confidence and trust in all doctors treating them Doctors did not talk in front of patient as if they were not there Patient's family definitely had opportunity to talk to doctor 2013 Score for this 2013 Score Number of respondents for this 55% 54% 558 79% 80% 550 84% 87% 611 81% 84% 609 61% 61% 502 Significantly Different from 20

Hywel Dda University Health Ward nurses Q46 Got understandable answers to important questions all / most of the time Q47 Patient had confidence and trust in all ward nurses Q48 Nurses did not talk in front of patient as if they were not there Q49 Always / nearly always enough nurses on duty 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q46 Q47 Q48 Q49 Got understandable answers to important questions all / most of the time Patient had confidence and trust in all ward nurses Nurses did not talk in front of patient as if they were not there Always / nearly always enough nurses on duty 2013 Score for this 2013 Score Number of respondents for this Significantly Different from 79% 75% 550 * 73% 73% 612 84% 86% 606 64% 60% 609 21

Hywel Dda University Health Hospital care and treatment (part 1 of 2) Q50 Patient did not think hospital staff deliberately misinformed them Q51 Patient never thought they were given conflicting information Q52 All staff asked patient what name they preferred to be called by Q53 Always given enough privacy when discussing condition / treatment Q54 Always given enough privacy when being examined or treated Q55 Patient was able to discuss worries or fears with staff during visit 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q50 Q51 Q52 Q53 Q54 Q55 Patient did not think hospital staff deliberately misinformed them Patient never thought they were given conflicting information All staff asked patient what name they preferred to be called by Always given enough privacy when discussing condition / treatment Always given enough privacy when being examined or treated Patient was able to discuss worries or fears with staff during visit 2013 Score for this 2013 Score Number of respondents for this 87% 89% 609 82% 84% 607 Significantly Different from 68% 62% 610 * 82% 83% 614 93% 94% 616 62% 63% 522 22

Hywel Dda University Health Hospital care and treatment (part 2 of 2) Q56 Hospital staff did everything to help control pain all of the time Q57 Always treated with respect and dignity by staff Q58 Given clear written information about what should / should not do post discharge Q59 Staff told patient who to contact if worried post discharge Q60 Family definitely given all information needed to help care at home 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q56 Q57 Q58 Q59 Hospital staff did everything to help control pain all of the time Always treated with respect and dignity by staff Given clear written information about what should / should not do post discharge Staff told patient who to contact if worried post discharge 2013 Score for this 2013 Score Number of respondents for this 87% 86% 530 85% 85% 612 80% 81% 506 90% 92% 593 Significantly Different from Q60 Family definitely given all information needed to help care at home 53% 57% 499 23

Hywel Dda University Health Arranging home support Q61 Patient definitely given enough care and help from health or social services 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 2013 Score for this 2013 Score Number of respondents for this Significantly Different from Q61 Patient definitely given enough care and help from health or social services 62% 59% 541 24

Hywel Dda University Health Hospital care as a day patient / outpatient Q62 Staff definitely did everything to control side effects of radiotherapy Q63 Staff definitely did everything to control side effects of chemotherapy Q64 Staff definitely did everything they could to help control pain Q65 Hospital staff definitely gave patient enough emotional support 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 2013 Score for this 2013 Score Number of respondents for this Significantly Different from Q62 Q63 Q64 Q65 Staff definitely did everything to control side effects of radiotherapy Staff definitely did everything to control side effects of chemotherapy Staff definitely did everything they could to help control pain Hospital staff definitely gave patient enough emotional support 76% 79% 303 85% 83% 549 83% 81% 559 75% 72% 675 25

Hywel Dda University Health Outpatient appointments with Doctors Q67 Doctor had the right notes and other documentation with them 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 2013 Score for this 2013 Score Number of respondents for this Significantly Different from Q67 Doctor had the right notes and other documentation with them 95% 96% 937 26

Hywel Dda University Health Care from your general practice Q68 GP given enough information about patient`s condition and treatment Q69 Practice staff definitely did everything they could to support patient 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 2013 Score for this 2013 Score Number of respondents for this Significantly Different from Q68 Q69 GP given enough information about patient`s condition and treatment Practice staff definitely did everything they could to support patient 92% 92% 769 70% 67% 691 27

Hywel Dda University Health Your overall NHS care Q70 Hospital and community staff always worked well together Q72 Given the right amount of information about condition and treatment Q73 Patient did not feel that they were treated as a `set of cancer symptoms` Q74 Patient`s rating of care excellent / very good 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < worse Percentage score better > 7A2 Q70 Q72 Hospital and community staff always worked well together Given the right amount of information about condition and treatment 2013 Score for this 2013 Score Number of respondents for this 66% 65% 965 85% 86% 892 Significantly Different from Q73 Patient did not feel that they were treated as a `set of cancer symptoms` 80% 81% 993 Q74 Patient`s rating of care excellent / very good 86% 89% 1018 28

Hywel Dda University Health Comparisons by Hospital - All Cancers Data The following tables show the all cancers (all tumour groups) data for each hospital within the Health /Trust and the national percentage scores for the all cancers dataset. Where a cell in the table is blank this indicates that the number of patients in that group was below 20 and too small to display. The number of respondents by hospital is displayed at the beginning of this report. Hospital scores that are statistically significant from the all-wales score are highlighted in yellow. Seeing your GP Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q1 Saw GP once / twice before being told had to go to hospital 74% 69% 78% 75% 73% Q2 Patient thought they were seen as soon as necessary 81% 74% 80% 79% 78% Q4 Patient's health got better or remained about the same while waiting 75% 77% 82% 81% 79% 29

Hywel Dda University Health Diagnostic tests Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q6 Staff gave complete explanation of purpose of test(s) 78% 78% 87% 79% 83% Q7 Staff explained completely what would be done during test 82% 81% 90% 88% 87% Q8 Given easy to understand written information about test 77% 81% 86% 85% 84% Q9 Given complete explanation of test results in understandable way 71% 77% 78% 79% 79% 30

Hywel Dda University Health Finding out what was wrong with you Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q11 Patient told they could bring a friend when first told they had cancer 63% 68% 73% 71% 70% Q12 Patient felt they were told sensitively that they had cancer 79% 83% 89% 84% 84% Q13 Patient completely understood the explanation of what was wrong 66% 73% 75% 79% 75% Q14 Patient given easy to understand written information about the type of cancer they had 52% 61% 59% 66% 62% 31

Hywel Dda University Health Deciding the best treatment for you Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q15 Patient given a choice of different types of treatment 74% 79% 86% 82% 84% Q16 Patient's views definitely taken into account by Doctors and nurses discussing treatment 65% 64% 71% 68% 71% Q17 Possible side effects explained in an understandable way 71% 70% 75% 70% 75% Q18 Patient given easy to understand written information about side effects 80% 80% 79% 77% 82% Q19 Patient definitely told about treatment side effects that could affect them in the future 51% 51% 51% 50% 55% Q20 Patient definitely involved in decisions about care and treatment 68% 67% 74% 68% 71% 32

Hywel Dda University Health Clinical Nurse Specialist Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q21 Patient given the name of the CNS in charge of their care 88% 76% 88% 89% 88% Q22 Patient finds it easy to contact their CNS 91% 65% 74% 87% 78% Q23 CNS definitely listened carefully the last time spoken to 92% 87% 91% 92% 92% Q24 Get understandable answers to important questions all / most of the time 93% 86% 90% 93% 92% 33

Hywel Dda University Health Key Workers Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q25 Patient given the name of the Key Worker in charge of their care 67% 49% 60% 61% 66% Q26 Patient finds it easy to contact their Key Worker 91% 75% 78% 92% 82% Q27 Key Worker definitely listened carefully the last time spoken to 97% 88% 93% 95% 92% Q28 Get understandable answers to important questions all / most of the time 97% 90% 90% 93% 91% Q29 Patient offered opportunity to discuss needs & concerns in order to put together a care plan 61% 46% 54% 54% 58% Q30 Patient offered a written care plan 21% 18% 22% 22% 22% 34

Hywel Dda University Health Support for people with cancer Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q31 Hospital staff gave information about emotional support 52% 53% 65% 69% 69% Q32 Hospital staff gave information about impact cancer could have on work / education 68% 57% 65% 67% 68% Q33 Hospital staff gave information on getting financial help 32% 33% 37% 35% 44% 35

Hywel Dda University Health Cancer research Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q34 Taking part in cancer research discussed with patient 28% 21% 14% 33% 29% Q35 Patient has taken part in cancer research 60% 62% 53% 74% 64% 36

Hywel Dda University Health Operations Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q37 Staff gave complete explanation of what would be done 81% 82% 91% 89% 87% Q38 Patient given easy to understand written information about the operation 54% 68% 69% 66% 70% Q39 Staff explained how operation had gone in understandable way 77% 70% 80% 82% 78% 37

Hywel Dda University Health Hospital Doctors Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q41 Patient able to talk to a Doctor as often as required 51% 49% 57% 62% 54% Q42 Got understandable answers to important questions all / most of the time 77% 71% 86% 83% 80% Q43 Patient had confidence and trust in all Doctors treating them 78% 82% 88% 87% 87% Q44 Doctors did not talk in front of patient as if they were not there 78% 76% 81% 88% 84% Q45 Patient's family definitely had opportunity to talk to Doctor 49% 52% 71% 68% 61% 38

Hywel Dda University Health Ward nurses Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q46 Got understandable answers to important questions all / most of the time 75% 79% 81% 81% 75% Q47 Patient had confidence and trust in all ward nurses 73% 72% 77% 72% 73% Q48 Nurses did not talk in front of patient as if they were not there 85% 83% 83% 86% 86% Q49 Always / nearly always enough nurses on duty 47% 64% 69% 67% 60% 39

Hywel Dda University Health Hospital care and treatment Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q50 Patient did not think hospital staff deliberately misinformed them 85% 81% 91% 89% 89% Q51 Patient never thought they were given conflicting information 78% 79% 85% 83% 84% Q52 All staff asked patient what name they preferred to be called by 66% 68% 69% 67% 62% Q53 Always given enough privacy when discussing condition / treatment 82% 79% 89% 80% 83% Q54 Always given enough privacy when being examined or treated 93% 93% 96% 91% 94% Q55 Patient was able to discuss worries or fears with staff during visit 55% 54% 71% 67% 63% Q56 Hospital staff did everything to help control pain all of the time 83% 84% 85% 92% 86% Q57 Always treated with respect and dignity by staff 80% 84% 88% 87% 85% Q58 Given clear written information about what should / should not do post discharge 64% 79% 82% 85% 81% Q59 Staff told patient who to contact if worried post discharge 89% 90% 90% 93% 92% Q60 Family definitely given all information needed to help care at home 46% 50% 54% 58% 57% 40

Hywel Dda University Health Arranging home support Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q61 Patient definitely given enough care and help from health or social services 66% 55% 47% 74% 59% 41

Hywel Dda University Health Hospital care as a day patient / outpatient Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q62 Staff definitely did everything to control side effects of radiotherapy 69% 71% 83% 76% 79% Q63 Staff definitely did everything to control side effects of chemotherapy 85% 81% 91% 84% 83% Q64 Staff definitely did everything they could to help control pain 85% 80% 83% 84% 81% Q65 Hospital staff definitely gave patient enough emotional support 83% 71% 77% 75% 72% 42

Hywel Dda University Health Outpatient appointments with Doctors Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q67 Doctor had the right notes and other documentation with them 98% 92% 98% 94% 96% 43

Hywel Dda University Health Care from your general practice Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q68 GP given enough information about patient`s condition and treatment 92% 92% 94% 90% 92% Q69 Practice staff definitely did everything they could to support patient 71% 73% 66% 68% 67% 44

Hywel Dda University Health Your overall NHS care Bronglais Glangwili Prince Philip Hospital Withybush All Cancers Q70 Hospital and community staff always worked well together 65% 63% 66% 69% 65% Q72 Given the right amount of information about condition and treatment 86% 83% 89% 85% 86% Q73 Patient did not feel that they were treated as a `set of cancer symptoms` 81% 80% 79% 79% 81% Q74 Patient`s rating of care excellent / very good 85% 84% 90% 87% 89% 45

Hywel Dda University Health Comparisons by tumour group for this The following tables show the Health /Trust and the national percentage scores for each question broken down by tumour group. Where a cell in the table is blank this indicates that the number of patients in that group was below 20 and too small to display. The number of respondents by tumour group is displayed at the beginning of this report. Seeing your GP Cancer Type Q1 Saw GP once / twice before being told had to go to hospital Q2 Patient thought they were seen as soon as necessary Q4 Patient's health got better or remained about the same while waiting Breast 94% 91% 79% 81% 93% 92% Colorectal / Lower Gastro 65% 68% 74% 74% 71% 74% Lung 71% 66% 77% 83% 74% 76% Prostate 73% 72% 76% 81% 85% 86% Brain / CNS 58% 76% 62% Gynaecological 76% 68% 76% 76% 68% 70% Haematological 60% 59% 79% 77% 67% 64% Head & Neck 72% 73% 75% Sarcoma 61% 68% 60% Skin 84% 76% 90% Upper Gastro 72% 65% 85% 78% 70% 62% Urological 75% 76% 83% 78% 84% 82% Other Cancers 60% 67% 75% 81% 70% 74% All cancers 73% 73% 78% 78% 79% 79% 46

Hywel Dda University Health Diagnostic tests Cancer Type Q6 Staff gave complete explanation of purpose of test(s) Q7 Staff explained Q8 Given easy to completely what understand written would be done during information about test test Q9 Given complete explanation of test results in understandable way Breast 88% 87% 90% 88% 88% 85% 83% 84% Colorectal / Lower Gastro 84% 83% 84% 88% 83% 87% 81% 79% Lung 74% 85% 86% 88% 66% 83% 58% 79% Prostate 80% 85% 84% 88% 76% 84% 77% 81% Brain / CNS 77% 84% 84% 71% Gynaecological 69% 77% 80% 83% 74% 79% 73% 76% Haematological 81% 82% 89% 89% 83% 81% 73% 73% Head & Neck 85% 85% 80% 80% Sarcoma 77% 83% 70% 83% Skin 84% 85% 69% 78% Upper Gastro 65% 78% 77% 84% 82% 82% 72% 72% Urological 80% 80% 85% 87% 90% 87% 78% 79% Other Cancers 72% 81% 82% 88% 88% 78% 67% 77% All cancers 81% 83% 85% 87% 83% 84% 77% 79% 47

Hywel Dda University Health Finding out what was wrong with you Cancer Type Q11 Patient told they could bring a friend when first told they had cancer Q12 Patient felt they were told sensitively that they had cancer Q13 Patient completely understood the explanation of what was wrong Q14 Patient given easy to understand written information about the type of cancer they had Breast 80% 77% 95% 90% 84% 81% 65% 69% Colorectal / Lower Gastro 76% 76% 87% 85% 76% 78% 54% 62% Lung 53% 71% 78% 83% 69% 75% 40% 57% Prostate 67% 69% 83% 84% 77% 80% 73% 78% Brain / CNS 81% 78% 61% 32% Gynaecological 69% 64% 76% 82% 65% 73% 36% 49% Haematological 69% 65% 82% 83% 63% 56% 68% 66% Head & Neck 65% 85% 77% 50% Sarcoma 56% 81% 63% 34% Skin 55% 85% 81% 60% Upper Gastro 60% 69% 78% 77% 69% 68% 52% 48% Urological 66% 65% 78% 80% 77% 75% 63% 57% Other Cancers 55% 62% 79% 78% 71% 69% 47% 48% All cancers 70% 70% 84% 84% 75% 75% 61% 62% 48

Hywel Dda University Health Deciding the best treatment for you Cancer Type Breast 90% 89% 75% 75% 77% 77% 84% 88% Colorectal / Lower Gastro 82% 77% 66% 67% 72% 75% 79% 83% Lung 80% 83% 64% 73% 75% 80% 76% 83% Prostate 89% 91% 67% 71% 66% 76% 80% 85% Brain / CNS 94% 75% 75% 73% Gynaecological 60% 79% 50% 68% 80% 75% 75% 81% Haematological 59% 78% 66% 65% 73% 72% 81% 79% Head & Neck 82% 76% 74% 74% Sarcoma 83% 73% 77% 67% Skin 75% 78% 72% 64% Upper Gastro 79% 84% 55% 65% 77% 75% 74% 81% Urological 61% 74% 65% 70% 65% 68% 76% 70% Other Cancers 58% 74% 69% 69% 56% 67% 70% 74% All cancers 81% 84% 67% 71% 71% 75% 79% 82% Cancer Type Q15 Patient given a choice of different types of treatment Q19 Patient definitely told about treatment side effects that could affect them in the future Q16 Patient's views definitely taken into account by Doctors and nurses discussing treatment Q20 Patient definitely involved in decisions about care and treatment Breast 49% 58% 77% 74% Colorectal / Lower Gastro 53% 56% 71% 71% Lung 47% 55% 66% 72% Prostate 57% 65% 67% 72% Brain / CNS 64% 59% Gynaecological 43% 52% 58% 73% Haematological 55% 52% 68% 68% Head & Neck 55% 70% Sarcoma 58% 79% Skin 44% 75% Upper Gastro 54% 49% 60% 65% Urological 47% 45% 70% 68% Other Cancers 41% 46% 69% 67% All cancers 51% 55% 69% 71% Q17 Possible side effects explained in an understandable way Q18 Patient given easy to understand written information about side effects 49

Hywel Dda University Health Clinical Nurse Specialist Cancer Type Q21 Patient given the name of the CNS in charge of their care Q22 Patient finds it easy to contact their CNS Q23 CNS definitely listened carefully the last time spoken to Q24 Get understandable answers to important questions all / most of the time Breast 98% 96% 77% 80% 89% 93% 92% 93% Colorectal / Lower Gastro 92% 91% 82% 81% 94% 92% 92% 92% Lung 91% 93% 76% 75% 90% 94% 86% 90% Prostate 68% 80% 63% 77% 89% 92% 86% 91% Brain / CNS 85% 65% 93% 92% Gynaecological 76% 91% 100% 78% 100% 93% 89% 93% Haematological 70% 80% 93% 82% 94% 93% 99% 94% Head & Neck 90% 64% 85% 86% Sarcoma 83% 72% 88% 87% Skin 79% 83% 93% 95% Upper Gastro 98% 95% 78% 74% 90% 91% 83% 89% Urological 68% 70% 83% 80% 93% 92% 88% 91% Other Cancers 97% 87% 75% 81% 79% 89% 94% 93% All cancers 85% 88% 79% 78% 90% 92% 91% 92% 50

Hywel Dda University Health Key Workers Cancer Type Breast 74% 78% 84% 82% 98% 94% 92% 94% Colorectal / Lower Gastro 70% 74% 81% 83% 88% 91% 83% 87% Lung 84% 80% 80% 82% 100% 96% 100% 87% Prostate 43% 54% 75% 84% 88% 95% 94% 94% Brain / CNS 72% 56% 88% 82% Gynaecological 54% 62% 100% 90% 100% 90% 100% 93% Haematological 48% 53% 85% 84% 91% 95% 100% 93% Head & Neck 69% 69% 84% 88% Sarcoma 55% 75% 92% 91% Skin 47% 72% 89% 94% Upper Gastro 67% 79% 94% 81% 100% 94% 87% 86% Urological 33% 39% 91% 84% 86% 87% 92% 92% Other Cancers 64% 66% 78% 85% 80% 92% 90% 90% All cancers 58% 66% 84% 82% 93% 92% 92% 91% Cancer Type Q25 Patient given the name of the Key Worker in charge of their care Q29 Patient offered opportunity to discuss needs & concerns in order to put together a care plan Q26 Patient finds it easy to contact their Key Worker Q30 Patient offered a written care plan Breast 59% 66% 23% 24% Colorectal / Lower Gastro 64% 64% 22% 28% Lung 65% 67% 33% 30% Prostate 35% 50% 14% 19% Brain / CNS 80% 25% Gynaecological 44% 55% 8% 18% Haematological 61% 56% 28% 25% Head & Neck 62% 0% 24% Sarcoma 55% 10% Skin 41% 11% Upper Gastro 52% 65% 19% 26% Urological 36% 37% 16% 15% Other Cancers 50% 51% 12% 17% All cancers 52% 58% 20% 22% Q27 Key Worker definitely listened carefully the last time spoken to Q28 Get understandable answers to important questions all / most of the time 51

Hywel Dda University Health Support for people with cancer Cancer Type Q31 Hospital staff gave information about emotional support Q32 Hospital staff gave information about impact cancer could have on work / education Q33 Hospital staff gave information on getting financial help Breast 71% 77% 69% 72% 34% 46% Colorectal / Lower Gastro 58% 67% 66% 69% 34% 44% Lung 74% 71% 80% 73% 39% 62% Prostate 58% 67% 56% 66% 19% 32% Brain / CNS 74% 83% 62% Gynaecological 58% 65% 54% 59% 18% 46% Haematological 68% 69% 79% 76% 52% 45% Head & Neck 71% 66% 45% Sarcoma 65% 56% 50% Skin 53% 63% 29% Upper Gastro 56% 70% 73% 73% 38% 50% Urological 39% 46% 37% 52% 15% 23% Other Cancers 48% 63% 47% 61% 44% 47% All cancers 61% 69% 64% 68% 34% 44% 52

Hywel Dda University Health Cancer research Cancer Type Q34 Taking part in cancer research discussed with patient Q35 Patient has taken part in cancer research Breast 35% 38% 69% 61% Colorectal / Lower Gastro 40% 31% 72% 69% Lung 32% 31% 64% 62% Prostate 19% 32% 33% 58% Brain / CNS 27% 38% Gynaecological 20% 26% 100% 78% Haematological 14% 26% 60% 73% Head & Neck 30% 60% Sarcoma 20% 64% Skin 10% 92% Upper Gastro 8% 19% 75% 57% Urological 9% 15% 58% 61% Other Cancers 31% 27% 83% 74% All cancers 24% 29% 65% 64% 53