Patient Pathway Mapping Project

Transcription

1 West Hume Cancer Network Patient Pathway Mapping Project Head and Neck tumour stream: Larynx, pharynx and oral cancer December 2012 Page 1 of 96

2 TABLE OF CONTENTS 1. EXECUTIVE SUMMARY AIM AND OBJECTIVES PROJECT SCOPE METHODOLOGY Operationalising the Patient Management Framework Participation of health professionals Participation of consumers Ethics approval Retrospective review of medical records Patient flow data analysis Presentation of results RESULTS Data collected Participation of health professionals Participation of consumers Retrospective review of medical records Patient flow data analysis Multidisciplinary care Multidisciplinary Team Meetings MDTM Meetings Local Services Findings of Multidisciplinary Care Successes Gaps Care Coordination Communication, Referrals and Linkages Findings of Care Coordination Successes Gaps Supportive Care Page 2 of 96

3 5.5.1 Discussion Findings of supportive care Successes Gaps Reducing Unwanted Variations in Practice Discussion Findings of Reducing Unwanted Variation in Practice Successes Gaps RECOMMENDATIONS Multidisciplinary Care Care Coordination Supportive Care Reducing Unwanted Variations in Care DISCUSSION ACKNOWLEDGMENTS REFERENCES APPENDICES Appendix 1: Patient Management Frameworks toolkit Appendix 2: Patient Pathway Mapping Health Professional Interview Questions Appendix 3: Consumer Participant Questionnaire Appendix 4: End of Life Care Pathway parts A & B (GV Health) Appendix 5: Background to the Patient Pathways Mapping Project A5.1 Frameworks to guide cancer reform in Victoria A5.1.1 Cancer Services Framework for Victoria A5.1.2 Victorian Cancer Action Plan A5.2 The Victorian Integrated Cancer Services A5.3 Establishment of tumour streams A5.4 Patient Management Frameworks A5.5 The four priority service improvement areas for statewide reform A5.5.1 Multidisciplinary care A5.5.2 Care coordination A5.5.3 Supportive care A5.5.4 Reducing variations in care Page 3 of 96

4 Appendix 6: Profile of the Hume region A6.1 Geographic coverage A6.1.1 Overview of the Hume cancer networks A6.1.2 Sub regions within the Hume cancer networks A6.2 Population A6.3 Cancer Profile Appendix 7: Patient Pathway Mapping Timelines Page 4 of 96

5 LIST OF TABLES Table 1: Tumour types identified as priority areas for the Border/East Hume Cancer Network Table 2: Tumour types identified as priority areas for the West Hume Cancer Network Table 3: Patient flow analysis for Head and Neck Cancer Table 4: Recommendations for multidisciplinary care Table 5: Recommendations for care coordination Table 6: Recommendations for supportive care Table 7: Recommendations for reducing unwanted variations in care Table 8: Hume region, Albury and southern NSW population forecasts Table 9: Hume, Albury and southern NSW population change Table 10: Incidence of Head and Neck cancer in the 5-year period by LGA, Hume region and Albury Page 5 of 96

6 LIST OF FIGURES Figure 1: Schematic representation of the optimal treatment pathway for the head and neck: larynx, pharynx and oral tumour stream... Error! Bookmark not defined. Figure 2: Fitch s Diagram Figure 3: The number of supportive care referrals per discipline/service for Head and neck: larynx, pharynx and oral cancer patients, within the West Hume region Error! Bookmark not defined. Figure 4: Systematic approach to quality in cancer services Figure 5: Map of the Victorian Integrated Cancer Services Model for safety and quality in Victorian cancer services Figure 6: The seven steps of the patient journey identified in the PMFs Figure 7: Victoria's model for multidisciplinary care Figure 8: Model for safety and quality in Victorian cancer services Figure 9: Map of the Hume RICS West Hume and Border/East Hume Cancer Networks Figure 10: Primary Care Partnership divisions in the Hume region Figure 11: Figure 12: Figure 13: Total cancer incidence by LGA, Hume region, Albury and southern NSW for the 5-year period Error! Bookmark not defined. Average annual cancer incidence by sex and age group, Hume region and Albury for the 5-year period Error! Bookmark not defined. Average annual cancer mortality by sex and age group, Hume region and Albury for the 5-year period Error! Bookmark not defined. Figure 14: Average annual cancer incidence by sex and cancer type in the Hume region for the 5- year period Figure 15: Average annual cancer incidence by sex and cancer type in Albury for the 5-year period Figure 16: Average annual cancer mortality by sex and cancer type in the Hume region for the 5- year period Error! Bookmark not defined. Figure 17: Total cancer mortality by sex and cancer type in Albury for the 5-year period Page 6 of 96

7 1. EXECUTIVE SUMMARY The Victorian Department of Health (DH) has a significant cancer reform agenda that aims to improve planning and delivery of treatment and support to patients so that appropriate care is provided in a timely manner as close to the patients home as possible. 1 Two leading policy documents guiding Victoria s cancer reforms are the Cancer Services Framework and Victoria s Cancer Action Plan (VCAP). The Cancer Services Framework identified structures and processes that support optimal cancer care, including the development of the Patient Management Frameworks (PMFs) in 2006 to guide the delivery of consistent cancer care for a range of tumour streams. 2 The PMFs were developed to provide a consistent statewide approach to care management across the ten identified tumour streams and are intended to improve patient outcomes by focussing discussion on the critical steps of the patient journey in order to identify priority areas for improvement. They aim to reduce unwanted variation in care and describe optimal referral pathways for cancer care from diagnosis to end-of-life care, inclusive of treatment and supportive care. This project aimed to identify the successes and gaps in the implementation of the PMFs across all stages of the patient journey for each of the four priority service improvement areas for statewide reform (multidisciplinary care, care coordination, supportive care, reducing unwanted variation in care). Further information about the background to the conduct of this project, including a detailed description of the Patient Management Frameworks and the process with which they were evaluated in this project is provided in Appendix 1 and 5. Project data were collected via a variety of mechanisms including consumer questionnaires and interviews, health professional interviews, and data analysis. The successes and gaps in service provision were identified from these data and are presented in Section 5 of this report. Based on these findings, recommendations for cancer service improvement were developed and prioritised by local clinicians. The recommendations identified as priorities in the West Hume Cancer Network were: Multidisciplinary Care Number Recommendation Short-term Long-term 1 West Hume RICS supports the increase in frequency and duration of Multidisciplinary Team Meetings in line with the tumour streams. 1 Clinical Networks: A framework for Victoria 2008 Department of Human Services 2 Patient management frameworks 2006 Department of Human Services Page 7 of 96

8 2 3 4 Hume RICS facilitates linkages to metropolitan Multidisciplinary Team Meetings where appropriate. West Hume RICS, through the West Hume CRG: - will advise of the DH cancer service performance indicators - will undertake random clinical record audits of referrals made following MDTMs - will promote to West Hume health professionals best practice models for multidisciplinary care and MDTMs Hume RICS will actively contribute to local and statewide initiatives to improve and implement multidisciplinary team meeting standardised processes. Care Coordination Number Recommendation Short-term Long-term 1 2 Health professionals and consumers should be well informed about the range of different treatment and supportive care options, particularly those available close to the patient s home Hume RICS facilitates education for clinicians aimed at providing them with the skills to encourage consumers to be involved in understanding and managing their own care including a focus on health literacy. 3 Hume RICS continues to identify barriers and strategies for engagement with community health and Home and Community Care (HACC) services, linking rural and remote patients with their local support services where possible. 4 5 Improving communication channels between all health professionals, including GPs through innovative options such as the Human Services Directory (HSD) and e-referral. Review and promote systems to ensure that appropriate patient clinical information including transition of care (discharge planning), is available in a timely manner. This includes but is not limited to : - GPs - Metro to regional hospitals - Private to public and public to private hospitals - Specialist cancer services - Primary health and community services Page 8 of 96

9 - Palliative care services 6 Support and promote the ongoing development of cancer care management plans and palliative care pathways. 7 Review of local (GV Health) lymphoedema models of care, including early intervention, are supported and implemented 8 Hume Regional Integrated Cancer Service facilitates feedback from PPM interviews regarding administrative support and processes, to ensure it is directed to the appropriate people within the health services. Supportive Care Number Recommendation Short-term Long-term 1 Health services are supported to ensure that all newly diagnosed cancer patients have access to supportive care screening and that these results are documented in the patient s central medical record 2 Supportive care screening is implemented at designated follow up intervals, including recurrence 3 The importance of supportive care discussion within a multidisciplinary team meeting is promoted and that this discussion is documented 4 Health services are supported to develop service models which include prevention, early intervention, treatment and support for cancer patients. Such services may include lymphoedema services, speech therapy, dietetics, counselling and home oxygen 5 Hume RICS continues to provide and promote practical support and information for consumers (including the Hume RICS website, tailored standardised information packs and professional development sessions for specialist cancer staff) and continues to focus on improving information and access to travel, accommodation and financial supports Page 9 of 96

10 Reducing Unwanted Variations in Care Number Recommendation Short-term Long-term Hume RICS will continue to inform Federal and State Government Departments of the need for public radiotherapy services in West Hume region. An education needs analysis should be conducted in order to develop and facilitate appropriate professional development for a broad range of health professionals involved in the care of patients with cancer; particularly in relation to issues such as death and dying, treatmentrelated sexual issues, health literacy and self care In consultation with the Goulburn Valley Medicare Local, Hume RICS provides GPs with access to oncology/specialist referral criteria and pathways Medical oncology education for small rural health services and GPs should be facilitated, including pain and side effect management for cancer patients Hume RICS investigates links to support local fertility services/specialists. 6 7 Systems for timely access to allied health services and practical supports are developed, particularly for patients in private hospitals Development of relevant policies, procedures & guidelines to support reducing unwanted variation in care Page 10 of 96

11 2. AIM AND OBJECTIVES The aim of the Patient Pathway Mapping Project was to identify opportunities for whole system improvement and development, for consistent and coordinated cancer care across the Hume Region. The objectives of this project were to use the Patient Management Frameworks (PMFs) to guide planning for service improvement activities by: Identifying the differences between the actual patient pathway and the optimal patient pathway as described by the Patient Management Frameworks, for each selected tumour stream Identifying strengths, gaps and duplications in the actual pathway of patients for each tumour stream Providing recommendations to support improvements focusing on delivering optimal treatment and support to patients, at each step of the care pathway Page 11 of 96

12 3. PROJECT SCOPE Patient pathways mapping in the Border/East and West Hume Cancer Networks were undertaken for the tumour streams as shown in Table 1 and Table 2. The Border/East and West Hume Clinical Reference Groups, as well as the respective Network committees (who act as advisory bodies to Hume RICS) were consulted to identify the top priority tumour types in each network. These tumour types were then allocated to their corresponding tumour streams, and mapped against the relevant PMFs (as presented in Table 1 and Table 2). It is important to note that the primary focus of this project was on the services provided within the West Hume Cancer Network. Whilst consideration was given to the experiences of patients required to travel outside of the region for components of their care, this was not a main focus of the project and detailed investigation of the services provided outside of the region (including at metropolitan sites) was not conducted. Table 1: Tumour types identified as priority areas for the Border/East Hume Cancer Network Tumour type Tumour stream PMF Ovarian Gynaecological Ovarian Melanoma Skin Melanoma Larynx, pharynx and oral Head & Neck Larynx, pharynx and oral Prostate Genitourinary Prostate Testicular Genitourinary Testicular Pancreatic Upper Gastrointestinal Pancreatic Colon & Rectal Colorectal Colon & Rectal Intermediate grade Non- Hodgkin lymphoma Haematological Intermediate grade Non- Hodgkin lymphoma Non-small cell lung Lung Non-small cell lung Cerebral metastases Central Nervous System Cerebral metastases Malignant glioma Central Nervous System Malignant glioma Page 12 of 96

13 Table 2: Tumour types identified as priority areas for the West Hume Cancer Network Tumour type Tumour stream PMF Non-small cell lung Lung Non-small cell lung Colon & Rectal Colorectal Colon & rectal Breast Breast Breast Prostate Genitourinary Prostate Ovarian Gynaecological Ovarian Melanoma Skin Melanoma Larynx, pharynx and oral Head & Neck Larynx, pharynx and oral Intermediate grade Non- Hodgkin lymphoma Haematological Intermediate grade Non- Hodgkin lymphoma Page 13 of 96

14 4. METHODOLOGY This project compared the actual patient treatment pathway with the optimal pathway as described in the Patient Management Framework Head and neck tumour stream: larynx, pharynx and oral cancer. Project data were collected via a variety of mechanisms including consumer questionnaires and interviews, health professional interviews, and data analysis. 4.1 Operationalising the Patient Management Framework A schematic representation of the optimal treatment pathway for the head and neck tumour stream was developed by the project team, based on the information provided in the PMF and is presented in Figure 1. This was used alongside the project data collection tools in order to identify the key steps of the optimal treatment pathway, and consequently the gaps and successes of the actual patient pathway. Page 14 of 96

15 Figure 1: Schematic representation of the optimal treatment pathway for the head and neck: larynx, pharynx and oral tumour stream 3 At greatest risk: Smokers Those with heavy alcohol consumption Betel nut/tobacco chewers (for oral cancers) Patient visits GP with symptoms which may include: Hoarse voice Difficulty swallowing Persistent sore throat (esp. with earache) Neck or parotid lump Mouth ulcer or mass Leukoplakia of oral mucosa Non-dental mouth or jaw pain Altered speech Spitting up blood Patient Treatment Pathway Larynx, Pharynx & Oral (Optimal) Based on larynx, pharynx & oral cancer PMF from Victorian DoH Patient referred for Multidisciplinary Team Meeting discussion (MDTM) Treating specialist presents at MDTM; care plan formulated Lead clinician informs patient of care plan Referral options include: ENT/HN surgeon (larynx or pharynx) ENT/HN surgeon/oral Maxillo-Facial surgeon (oral) Patient decides on treatment Y/N? Yes No No treatment Consider follow-up plan, may include palliation or end-oflife care Diagnosis & Staging Biopsy of primary tumour or FNA of neck lump (if necessary under US guidance) Assessment of same by pathologist experienced in HN cancers Staging via clinical & endoscopic examination & appropriate imaging (CT and/or PET if available) *Synoptic reporting with path staging following surgical resection (see Treatment box) Abnormality found Treatment may be one or a combination of: Surgery (see * in Diagnosis & Staging box) Radiotherapy Chemotherapy Follow-up maintenance/review, can include rehabilitation of speech & swallowing, and follow-up of adequate oral intake Abnormalities found All clear Survival; consider monitoring plan No Abnormality Results Investigative tests may include: Clinical examination, inc laryngoscopy and/or biopsy Imaging (CT, MRI, PET) as required No treatment Consider follow-up plan More treatment Results No more treatment Consider follow-up plan, which may include palliation or end-of-life care 3 Patient management framework head and neck tumour stream: larynx, pharynx and oral cancer 2006 Department of Human Services Page 15 of 96

16 4.2 Participation of health professionals Individual semi-structured interviews were conducted with clinicians and other health professionals to identify the successes and gaps in the implementation of the PMFs. The interview tool that was utilised for this project was based on the Department of Health resource Patient Management Frameworks toolkit (attached as Appendix 1). It incorporated the key elements of multidisciplinary care, care coordination, supportive care and variations in care, at each stage of the cancer journey from diagnosis, through to end of life care. The Health Professional interview questions are attached as Appendix Participation of consumers Consumer participation in the project was designed as an opt in approach. Flyers were distributed to numerous health service sites including general practitioners, regional hospitals and community health centres. The recruitment strategy also included circulating invitations to regional cancer support groups and the Hume RICS Community Participation Network, as well as advertising through local newspapers and other media. Consumers were offered the opportunity to participate in an individual interview, complete a questionnaire or participate in a small group forum. The questionnaire and interview questions that were developed for this project were informed by previously utilised patient surveys 4 5 (attached as Appendix 3) Ethics approval Ethics applications were submitted to the Albury Wodonga Health Human Research Ethics Committee (HREC) and the Northeast Health Wangaratta HREC. The ethics submission to Albury Wodonga Health HREC included project research approval for Albury Wodonga Health (both Albury and Wodonga hospital campuses), Albury Wodonga Private Hospital, Murray Valley Private Hospital, Goulburn Valley Health and Kilmore & District Hospital. The submission to Northeast Health Wangaratta HREC included project research approval for this site only. The purpose of the HREC submissions was to seek approval for Hume RICS to advertise for the recruitment of potential participants (cancer patients) in hospital settings within the Hume Region, and to conduct subsequent interviews, questionnaires and small group forums to collect information about their cancer care experiences. 4.4 Retrospective review of medical records Within the Victorian Admitted Episodes Dataset (VAED), ICD-10 diagnostic and procedural codes were used to identify a sample of patients with a new cancer diagnosis that had undergone treatment. Patients were selected from the datasets available for the 2009/10 and 2010/11 financial years. Up to 25 patients were randomly selected for each nominated tumour stream from each of the four Hume sub-regions. The actual number of patients reviewed was fewer for the low volume cancers according to the number of diagnoses within the specific period. A proforma was developed to record standardised information from the medical records, however as described in more detail below, there were major limitations in utilising information extracted 4 National Survey of NHS Patients Questionnaire ( ), Centre for Social Research, Picker Institute Europe 5 Victorian Cancer Patient Experience Survey Tool 2011, Victorian Department of Health Page 16 of 96

17 from medical records. It should also be noted that the information retrieved from the medical records for the purposes of this project differed to that collected as part of the Victorian Cancer Service Performance Indicator reports. It was intended that information extracted from the medical record would be collected regarding presentation at MDTM, evidence of correspondence with General Practitioners, details of treatment and supportive care referrals. However, it was often difficult to generate a thorough and accurate representation of the patients entire care pathway based on the medical record review. This was due to patient care often being delivered across multiple sites within and outside of the West Hume Cancer Network, involving a mix of public/private services, each with their own individual medical record. By examining the medical record at the site where the patient had the bulk of their treatment (eg. chemotherapy), it was often not possible to determine all of the relevant treatment and referrals initiated before they were admitted for chemotherapy (eg. from the site where they had their surgery) etc. Ideally patients would have been followed longitudinally through their care pathway across multiple health service sites, but this was not possible in the absence of a linked dataset that enabled patients to be easily tracked through the system. Therefore, a decision was made to exclude the majority of the information obtained from the medical record review due to concerns the data did not accurately represent the patient journey. However, information obtained from the medical record review regarding supportive care referrals has been included in this report, represented as Fitch s tiered approach to providing supportive care. 4.5 Patient flow data analysis The VAED was again utilised to analyse patient flow of local residents to service providers both within and external to Hume RICS during the 2009/10 and 2010/11 financial years. The dataset was used to identify local residents of each of the four Hume sub-regions, then analysed to determine the service site at which these patients had an inpatient episode of care. A further analysis was completed to determine the type of care delivered by ICD-10 diagnostic and procedural codes for each of the nominated tumour streams. 4.6 Presentation of results As described in Appendix 5, the focus of this Patient Pathways Mapping Project was to investigate the success with which the PMFs have been implemented at each step of the patient pathway, across each of the four key priority areas of: multidisciplinary care care coordination supportive care reducing unwanted variation in practice (quality monitoring and support) Accordingly, the findings of this project have been presented under these four priority areas, in order to identify the successes and gaps in the care pathway for head and neck cancer in the West Hume Cancer Network. Findings have been presented as successes or gaps. Recommendations for the four priority areas were then developed and were circulated to the Hume RICS West Hume Clinical Reference Group (CRG) for comment and classification as short-term or long-term activities. Page 17 of 96

18 5. RESULTS This section presents the results of the Patient Pathways Mapping Project in the West Hume Cancer Network. 5.1 Data collected Data for this project were collected from a variety of sources, including health professional interviews, consumer questionnaires and interviews, medical record reviews and data analysis Participation of health professionals A total of 43 clinicians and health professionals were interviewed for the entire Patient Pathways Mapping Project (across all 8 tumour streams for the West Hume Cancer Network), including medical oncologists, radiation oncologists, surgeons, physicians, general practitioners, registrars, oncology nurses, Nurse Unit Managers, palliative care nurses, social workers, dietitians and other nurses who are involved in the care of cancer patients Participation of consumers For the entire Patient Pathways Mapping Project (across all 8 tumour streams for the West Hume Cancer Network), a total of 17 consumers completed a written questionnaire Retrospective review of medical records A total of 11 medical records were reviewed for patients who had received treatment specifically for head and neck cancer in the Goulburn Valley and Lower Hume. 5.2 Patient flow data analysis Table 3 below illustrates the number of head and neck cancer patients who contributed to hospital inpatient episodes of care for residents of the Hume region in the financial year. This specifically relates to residents of the Goulburn Valley Hume sub region (Greater Shepparton, Strathbogie and Moira LGAs) and Lower Hume sub region (Mitchell and Murrindindi LGAs). The table shows the number of patients who are residents of the Goulburn Valley and Lower Hume sub regions who received components of their care both within the Hume region (Central Hume, Upper Hume, Goulburn Valley and Lower Hume sub regions), and outside the Hume region (LMICS, NEMICS, SMICS, WCMICS, BSWRICS*) and at other private hospitals across the state. Due to privacy reasons, where there is less than 5 patients, the exact number can not be listed and instead must be represented as <5. As shown in Table 3, there were 7 patients who were residents of Goulburn Valley, who also received their treatment within that sub-region. Other residents of Goulburn Valley travelled to receive treatment for their head and neck cancer at other treatment locations such as WCMICS and other private hospitals however the majority of patients received treatment through WCMICS. Smaller numbers (<5) recieved treatment at Lower Hume, LMICS, NEMICS and SMICS. The data also shows that a majority of patients residing in Lower Hume travel to the metropolitan centres to receive treatment. This highlights the fact that patients from Goulburn Valley and Lower Hume do Page 18 of 96

19 travel outside the region to receive components of their care. Further investigation is required to determine whether this travel outside the region is necessary and appropriate, and if so, how patients can be supported to receive seamless care coordination between health service sites. Table 3: Patient flow analysis for Head and Neck Cancer 6 Treatment Location Goulburn Valley Residency of Patient Lower Hume Central Hume 0 0 Upper Hume 0 0 Goulburn Valley 7 0 Lower Hume <5 <5 LMICS <5 0 NEMICS <5 5 Other Private 5 <5 SMICS <5 <5 WCMICS 9 <5 BSWRICS 0 0 *Note: LMICS = Loddon Mallee Integrated Cancer Service, NEMICS = North Eastern Metropolitan Integrated Cancer Service, SMICS = South Melbourne Integrated Cancer Service, WCMICS = Western and Central Melbourne Integrated Cancer Service, BSWRICS = Barwon South Western Regional Integrated Cancer Service 6 Data obtained from Cancer Council Victoria Page 19 of 96

20 5.3 Multidisciplinary care Multidisciplinary Team Meetings There is currently no MDTM held locally in the West Hume region for patients with head and neck cancers as patients diagnosed with these cancers are generally referred directly to Melbourne by their GP or to the visiting Ear, Nose & Throat specialists who consult privately and publicly in the Goulburn Valley area. These specialists then ensure patients are presented at a metropolitan MDTM MDTM Meetings Goulburn Valley Health (GVH) Currently there are four tumour specific MDTMs held at GVH: Breast and a combined meeting for Gastrointestinal (upper and lower) and Skin cancers. The Breast MDTM commenced in December 2008 and has been held on a 4 weekly basis since. The Gastrointestinal (GI)/Skin MDTM commenced in October (A Gynaecological MDTM utilising linkages with the Royal Women s Hospital commenced in December 2012 at the time that this report was being finalised.) There are currently no MDTMs for other tumour streams however service improvement work has commenced to increase the number of tumour stream MDTMs. Generally patients for other tumour streams e.g.; prostate, CNS, lung would be referred to a metropolitan hospital for specialist care, where MDTMs occur due to comprehensive service availability. Feedback from clinicians indicates that they are supportive of the role of MDTMs at GVH, and would like for frequency and duration of MDTMs to increase, improving standards of patient care. Increasing the frequency and duration of MDTMs ensures adequate multidisciplinary discussion and treatment planning of patients prior to commencing treatment as well as increased access to a MDTM where patient numbers are high. This will also ensure adequate meeting time to discuss newly diagnosed patients. CANMAP, a secure web-based system designed specifically for the management and administration of MDTMs and Cancer Care Coordination is utilised in all GVH MDTMs. Whilst treatment recommendations are documented in CANMAP and then distributed to the relevant parties including GPs, medical oncologists, radiation oncologists and health service central medical records, it has been identified the system needs to be utilised correctly to ensure consistency and accuracy. Multidisciplinary Team Meetings are medically focused with a separate Supportive Care meeting held on a fortnightly basis. All new patients through the oncology unit are reviewed at this Supportive Care meeting, including head and neck cancer patients who may be receiving palliative chemotherapy. The meeting is chaired by the Oncology Nurse Unit Manager (or delegated Oncology Nurse) and participants include Goulburn Valley Hospice, Moira Shire Palliative Care, GVH dietetics, social work and oncology nurses. A care plan is completed after each meeting and a copy sent to the central medical records unit and the GP. Terms of Reference have been developed for this meeting. Kilmore & District Hospital (K&DH) There is one general MDTM held at K&DH every four weeks, however this is currently under review. The MDTM is coordinated by a MDTM Administrator, funded for 8 hours per week by Hume RICS, and is both clinically and supportive care based. Hospital inpatients and newly diagnosed cancer patients are discussed at these meetings. Terms of Reference need to be developed for this meeting. CANMAP is not currently utilised for this meeting.

21 5.3.3 Local Services Diagnostic Services in the Goulburn Valley Goulburn Valley Imaging (GVI) provides services at GVH and at their private facility in Shepparton. At the hospital site, the service provides: Computerised tomography (CT) X-rays Ultrasound Fluoroscopy A privately- funded nuclear medicine facility A reporting service for the hospital operated magnetic resonance imaging (MRI) service. GVI s private facility provides: Bone density machine (DEXA) X rays Computerised tomography (CT) Ultrasound Nuclear medicine Echocardiograms Focus Radiology and Nuclear Medicine is a private medical imaging provider located in Shepparton. They offer the following services: Computerised tomography Plain film x-rays Ultrasound Nuclear medicine Bone densitometry The visiting Ear, Nose & Throat specialists reported that they have good access to local pathology and radiology services. Surgical Services Patients who require subspecialty surgery are generally referred to Melbourne, in which some are referred back for post operative and oncology services in Shepparton. GVH Peter Copulos Cancer and Wellness Centre The Peter Copulos Cancer and Wellness Centre provide a 10 chair chemotherapy service; it has two additional spaces allowing for future expansion. It also includes two beds and one procedure room. The centre is supervised on an outreach basis by St Vincent s Health and in early 2012 GVH employed two fulltime dedicated medical oncologists to the Peter Copulos Cancer and Wellness Centre. The Oncology Clinic provided at the centre includes: Two oncology clinics per calendar month, provided by St Vincent s Health oncologists. Two oncologists attend one clinic day and three oncologists attend the second clinic day. Weekly haematology clinic, provided by St Vincent s Health haematologists. Four haematologists travel to Shepparton on rotation, one per week. Page 21 of 96

22 Monthly radiation oncology clinics, provided by the Bendigo Health regional radiotherapy service, which is operated by Peter MacCallum Cancer Centre. In addition, GVH also provides the following services: Pharmacy Emergency Department Supportive Care Pathology Radiology Kilmore & District Hospital The K&DH operates a chemotherapy service that is funded for two chairs, and operates three days a week all year round. The chemotherapy unit is supervised by a visiting private oncologist associated with John Fawkner Private Hospital. The K&DH is able to provide a wide range of chemotherapy treatments, except for some of the more specialised treatments and those where patients need a level of acute medical and nursing back up which is currently not available locally. The service is provided by registered nurses, some of whom also work at metropolitan hospitals, such as The Northern Hospital. Whilst K&DH is part of the West Hume region, due to its locality, its primary cancer services relationships are with metropolitan health services. The K&DH also provides: Local pharmacy support, able to provide pre packaged treatments Outpatient radiology, pathology and endoscopy services Onsite urgent care service Onsite allied health services Consultation rooms for the visiting oncologist GPs acting as Visiting Medical Officers Findings of Multidisciplinary Care In terms of general multidisciplinary care, findings identified that there are gaps in communication between treating services and patients and their families throughout the patient s cancer journey, with 29% of consumers reporting that they didn t believe that their GP had been kept well informed about their cancer care. Because my GP was not receiving information, it was confusing to all concerned as to who I was to contact when I needed medical help during my treatment Successes Gaps Patients seen by the visiting Ear, Nose and Throat (ENT) surgeons in the Goulburn Valley region are presented at metropolitan MDTMs prior to receiving treatment. Health professionals (other than ENT surgeons) involved in the care of Head and Neck cancer patients don t currently have the ability to remotely link into metropolitan MDTMs. In relation to initial referrals from GPs to treating clinicians, the overall consensus is that referrals are sent through within a timely fashion, however it has been highlighted that there is a need for education for GPs relating to the detail provided in referrals, general referral pathways and pre - work up requirements. Page 22 of 96

23 Communication between treating service providers and the consumer can be inconsistent, especially in cases where consumers receive treatment at multiple sites. Continuous and accurate communication between treating health professionals and the consumer, regardless of where the consumer is receiving treatment, ensures all parties are adequately informed throughout the patient s cancer journey. 5.4 Care Coordination The PMFs set out a consistent structured model of the seven critical steps of the patient s journey. Whilst these steps appear linear, it is clear, as evident from this project that patients care in practice does not always occur as set out. Rather, patient care depends on the particular cancer, when and how it was diagnosed, prognosis, management decisions, and patient decisions. One of the key principles that help to support the seven steps of the patient journey is care coordination. For the purpose of this report the following areas will be discussed, as these key areas have been identified as lacking effectiveness from the research conducted in this project Communication, Referrals and Linkages It has been identified that there are gaps in communication between health service providers locally, and also between metropolitan and rural health services, and further between treating services and patients and their families. Generally, communication between hospitals and service providers is very much based on existing relationships rather than actual processes or procedures. Some health professionals felt that referrals from GPs is relatively good, but there is still a need for improvement specifically in relation to appropriate work up, as this is very dependent on the individual GP. It has been suggested that a local referral flow chart would be advantageous to assist GP s in applying appropriate referral pathways. Numerous health professionals indicated that communication from metropolitan hospitals regarding patients care was poor, as it can be very difficult to provide optimal care to those patients returning home and who require follow up care, or present for example, through the GVH emergency department with complication without adequate information. Overall general communication between health services and referral pathways, that is streamlined and simple, would help to minimise this current gap. The evidence of discharge planning within GVH was clearly evident through medical record review, and in most cases the amount of relevant and concise information provided with those discharge summaries gave a clear understanding to other health care providers, namely the patients GP, the care provided and further care required upon discharge. However, whilst this was clearly evident in the majority of cases, there is still room for improvement, ensuring other health professionals including the patients local GP are well informed about the patients discharge care and requirements. It has also been identified from a K&DH perspective that discharge planning especially from metropolitan hospitals, i.e. Northern Hospital, is basically non existent. However, K&DH currently is working towards addressing this issue. A major area of concern typically to those patients who reside in rural/regional areas is the burden of travel and accommodation. Cancer patients and their families often have to travel between multiple sites within (and sometimes outside) the region, which may result in disjointed care, poor coordination of care, and increased costs. This can add to the burden of the patient s cancer experience. Currently patients residing in the West Hume region don t have local access to radiotherapy services. Patients are required to either travel to Melbourne or Bendigo for public treatment or Albury/Wodonga for private treatment. This adds substantial pressure to people requiring radiotherapy that live in the West Hume Region. Page 23 of 96

24 Shepparton is the major regional area for patients to access cancer services, however it was noted by both health professionals and patients that there is a considerable lack of knowledge and awareness of services available locally. This often means that patients returning back to the community after treatment are not aware that in many cases, for example, follow up care, can be provided by local health professionals which would reduce the burden on the patient in accessing follow up services in the metropolitan area. Furthermore, this lack of awareness and knowledge reduces the ability of patients to make informed decisions regarding their treatment options, for example, having local chemotherapy. Health literacy has been identified as an issue relating to patients understanding and managing their own care. It is important that all health professionals are continually educated in the importance of delivering information that the patient understands. This reduces the issues associated with miscommunication between health professional and their patients, empowering patients to make informed decisions relating to their treatment and care management. It has been identified by Visiting Medical Officers (VMOs) across many tumour streams that there is no support from GVH at an administration level Findings of Care Coordination Successes Gaps ENT surgeons have good access to local radiology and pathology services. VMOs feel there is a lack of support from GVH at an administrative level. Currently there are no radiotherapy facilities in the West Hume Region. Lack of knowledge/awareness from both health professionals and consumers regarding access to local support and treatment services, i.e. chemotherapy. Gaps identified in communication between health service providers locally, and also between metropolitan and rural health services, and further between treating services and patients and their families. Often this results in patients becoming lost in the system. There are areas for improvement regarding discharge planning, ensuring other health professionals including the patients local GP, are well informed of the patients discharge care and requirements. Patients who are referred to metropolitan hospitals often have their whole treatment managed under the one health service eg; Peter MacCallum Cancer Institute, rather than being referred back locally for follow up care. There are areas for improvement in general communication and referral pathways. Communication between hospitals and service providers is often based on existing relationships rather than an actual process or procedure. Health literacy and communication between patients and health professionals has been identified as an issue relating to patients understanding and managing their own care, with 29% of consumers reporting that health professionals involved in their care did not help them to make a treatment decision that they, the patient, was comfortable with. Page 24 of 96

25 5.5 Supportive Care The Victorian supportive care model adapts Fitch s tiered approach to providing supportive care. 7 For the purpose of this discussion, this approach defines the different levels of need within a population group. 8 For the purpose of this project, complexity has been identified by the number of referrals required to meet the supportive care needs of each patient. These data were extracted from a retrospective review of patient medical records. Utilising this definition referral patterns in the West Hume Cancer Network reflect Fitch s Diagram. Figure 2: Fitch s Diagram General needs All patients 46.1% of patients had 0-2 referrals Many patients 34.8% of patients had 3-5 referrals Complex needs Some patients Few 16.3% of patients had 6-8 referrals 3.5% of patients had 9-10 referrals Fitch s Diagram Results of West Hume Cancer Network PPM Project Consumer Feedback The area of practical issues such as childcare, finances or transport to and from hospital was not universally well addressed, with 71% of respondents reporting that a health professional did not check if consumer had concerns with such issues Only 41% of respondents were told how to get further information about cancer e.g.: Web sites, booklets, Cancer Help Line Many respondents had long distances to travel to hospital for surgery, with 65% of consumers having greater than fifty kilometres to travel Only 53% of respondents were advised of counselling services available if required When told you have cancer the rest of the words - treatment etc just go over your head. In hindsight, I think psychological counselling before the treatment begins would be far more beneficial than anything after the treatment 7 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services 8 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services Page 25 of 96

26 Only 53% of respondents were told of additional services that could be accessed during cancer care Only 41% of respondents knew where they could get extra support if required We didn't have anywhere to go to ask questions about services, help we might need, or Doctors we might consult with, info about my type of cancer, how urgent any treatment needed. There is just nowhere to go. Respondents concerns were many and varied, with travel and finance a common issue. Travelling costs reimbursement, regardless of distance travelled. Luckily, I had wonderful friends who bore a lot of this cost for us. I only work as casual and therefore had no sick leave Travelling to and from was difficult as my wife does not drive in Melbourne. Only 45% of respondents who received radiotherapy were offered any social or psychological support. Almost all respondents (91%) who received subsequent treatments for radiotherapy felt socially and psychologically supported. Only 40% of respondents who received chemotherapy were offered any social or psychological support. Almost 60% of respondents who received subsequent treatments for chemotherapy felt socially and psychologically supported. No support during treatment Discussion Access and Referrals to Supportive Care Services As shown below in Figure, there were a total of 11 head and neck: larynx, pharynx and oral cancer patient medical records reviewed at GVH and K&DH with 39 supportive care referrals generated in total. The greatest number of referrals was to Palliative Care. On average, there were approximately 3-4 supportive care referrals per patient, indicating a high level of supportive care needs for these patients. Page 26 of 96

27 Figure 3: The number of supportive care referrals per discipline/service for Head and neck: larynx, pharynx and oral cancer patients, within the West Hume region Diabetes Education, 18% Hospital In The Home, 18% Social Work, 9% Palliative Care, 55% Total number of medical records = 11 Total number of Supportive Care Referrals = 39 Other, 27% Post Acute Care, 27% District Nursing Service, 45% Speech Pathology, 36% Dietician, 45% Occupational Therapy, 36% Physiotherapy, 36% Head & Neck Cancer Supportive Care Referrals Palliative Care and District Nursing Service (DNS) As shown in Figure, 55% and 45% of referrals were made to Palliative Care and DNS, respectively. GV Hospice is a stand alone community based palliative care service offering a flexible 24hr 7 day a week service with consultancy provided to Lower Hume and Moira Shire. GV Hospice provides a multifaceted service with the majority of referrals received from local GPs, the GVH Oncology Department and Acute Medical Ward. It was highlighted that referrals are often based on existing relationships as opposed to formal processes. Anecdotal evidence stated that discharge planning from GVH can be an issue due to the complexities of patients wanting to go home to receive end of life care. It was clearly evident that GV Hospice has an excellent rapport with services and health professionals, as they have an increased awareness of services provided by GV Hospice. Palliative care progress notes is an area in which improvement is required in ensuring documentation is completed. This latter observation was both highlighted in the medical record reviews and recognized by GV Hospice. GVH offers an Acute Pain Management (APM) Consultant who is employed at 5 days a fortnight. Predominantly the role is education in the acute setting for management of acute pain. Moira Palliative Care works as a co-ordination centre for the areas of Numurkah, Nathalia, Cobram and Yarrawonga, and works with the local DNS to provide end of life care. Patients requiring palliative care are contacted within three days of receiving the referral, where patients are then assessed and linked in with their local DNS. In cases where patients have complex care or become unstable, palliative care becomes involved, otherwise the local DNS will provide care. Evidence stated that most patients will pass away in their local hospital service which is normally the patient s choice, especially with elderly patients. All local GPs have admitting rights to local hospitals. Page 27 of 96

28 In Kilmore and surrounding areas, it was noted that the DNS did not receive palliative care referrals in a timely manner. This impacts on the establishment of timely support services in the home. During the implementation of the K&DH SCST project, K&DH health professionals identified poor discharge planning and referral processes. It is envisaged that the current disparities in discharge planning and referral processes will improve and increase awareness of local services ensuring patient are given options when being referred locally. Dietetics Head and neck cancer patients have increased needs for dietetic services. Within GVH prior to the implementation of the SCST all new patients would be automatically referred to the oncology dietician, which lead to dieticians receiving unnecessary referrals. The screening tool has reduced unnecessary referrals and has improved overall dietetic services and patient s reviews; however dietetics for cancer patients is still under resourced as referrals are also received from other areas of the hospital such as the medical ward. Increase in resource availability would allow for a more proactive service especially in terms of reviewing those patients at high risk. Furthermore, it was noted that currently not only are patients not being reviewed as often as required, but also the service is limited in it s ability to follow up patients who have been admitted and then discharged home. Head and neck patients receive supportive care in the treatment phase within the metropolitan area. Patient who require palliative care chemotherapy usually undergo this at GVH, however the number of cases are known to be small. 45% of referrals identified within GVH medical records were to dietetics; it was identified that referrals to dietetics came from an array of areas including both inpatient and outpatient sources, including local GPs and metropolitan hospitals. Speech Pathology Figure denotes 36% of referrals were to speech pathology, which gives a general indication that this service is being utilised for head and neck patients returning to the community at different points along the care pathway within GVH. GVH has speech pathology inpatient and outpatient service. There is no dedicated speech pathologist attached to the oncology department, nor does speech pathology attend the Oncology Supportive Care MDTM. Those head and neck patients who require cancer treatment are generally treated in the metropolitan area, with GVH speech pathology having good links with St Vincent s Hospital and Peter MacCallum Cancer Institute. It has been described that communication between GVH and Peter MacCallum is adequate. In most instances Peter MacCallum does refer patients back to GVH and the information provided is sufficient, however patients can still fall through the gaps when coming back into the community as there is a lack of awareness of local cancer services available, including support groups. Referrals are made to speech pathology from Ear, Nose & Throat (ENT) Visiting Medical Officers (VMO), and it was highlighted by an ENT VMO that it can be difficult to have patients seen by speech pathology in a timely fashion which has the potential to impact on patient care outcomes. Occupational Therapy There is no dedicated occupational therapy (OT) service for cancer patients of the GVH oncology department. OT services the whole of GVH and surrounding Shepparton areas, excluding the Rural Health Team target group. Currently there is 1 OT for the whole of GVH, servicing all acute areas, other than the Rehabilitation/GEM Unit, which has a dedicated OT. It was highlighted that the capacity to provide an effective service is limited due lack of funding availability. Currently the service within GVH only allows the OT to undertake needs identification and discharge planning in the acute areas. Access to equipment occurs through Goulburn Valley Hospice (GV Hospice) due to availability and quantity of equipment. 36% of referrals were to the OT for head and neck cancer patients. Page 28 of 96

29 Physiotherapy Physiotherapy offers a wide range of support services to cancer patients of GVH with 36% of supportive care referrals made to physiotherapy. Whilst there is no specifically allocated service to oncology the same works closely with oncology to meet the needs of cancer patients. There was no evidence to suggest that there are gaps in referral processes, in which it was also noted that the information provided on referring patients is reasonably sound. Social Work A social worker is employed by GVH to provide a 4 day service to oncology patients. Prior to the implementation of the validated Supportive Care Screening Tool (SCST), all new cancer patients to the oncology department would receive an initial referral to the social worker. This was well documented in the Supportive Care MDTM treatment plans sighted from the medical record reviews conducted. Since the implementation of the SCST into the GVH oncology unit in December 2011, referral processes and the information provided to social work has improved. However, it was suggested that despite the benefits of the tool, it is still important that cancer patients are aware of social work and the service that can be provided, as even if identified as not an initial requirement, the service may be needed in the future. It was recognised that patients who are treated in the metropolitan areas and including Bendigo Health, aren t always connected back to social work for services locally. It was also noted by consumers and health professionals and in particular social work, at both GVH and K&DH, that a major area of concern typically to those patients who reside in rural/regional areas is the burden of travel, accommodation and finance. Within Kilmore and surrounding areas, a vast majority of patients are required to travel to Melbourne for their treatment. Due to the lack of public transport service available, and patients not being eligible for the Victorian Patient Transport Assistance Scheme (VPTAS) due to the proximity of Kilmore to Melbourne, patients often rely on assistance from family and friends during their treatment. It has been identified that Centrelink can be a potential added stress for patients who perceive Centrelink has limited understanding or awareness of their situations. This is compounded by the complexity of numerous forms that are required to be completed eg; Victorian Patient Transport Assistance Scheme (VPTAS) and Interstate Patient Travel Assistant Scheme (IPTAS) forms which subsidise travel and accommodation costs. As there are no radiotherapy treatment facilities in the West Hume region, patients must travel and often need to seek accommodation closer to those treatment centres due to the intensity and frequency of radiotherapy treatment. Currently there is a social worker employed by K&DH who works two days a week and services all inpatients. It was noted that this level of service is limited, as whilst there is a huge need for social work services at K&DH, currently work is based on what can be done in such a small space of time. At the time of the interview held with the K&DH social worker, they had not yet participated in the SCST, however it was noted that that the implementation of screening would be extremely beneficial. It was highlighted that there was a lack of referral processes in place and that the social worker currently sees patients on a very ad hoc basis, due to poor referral processes. The K&DH ward clerks were noted as being very good at referring patients; however this was more of a verbal request rather than a structured referral process. A common referral for social work is to palliative care services. Following the interview held with the social worker the SCST was implemented at K&DH and referral pathways and service provider information were developed and incorporated into K&DH s pathway for chronic disease management guidelines. Page 29 of 96

30 5.5.2 Findings of supportive care Successes Gaps Implementation of the SCST at both GVH and K&DH. It is envisaged that with the implementation of the latter the gap between identifying patient needs, knowledge of service options and timely referrals, will be minimised significantly. Currently fortnightly supportive care meetings are held within the GVH oncology department, where all new patients are reviewed. Whilst this is a success, the inclusion of supportive care discussions and documentation in formalised MDTMs ensures adherence to the PMFs and maintains optimal patient care. K&DH currently conducts MDTMs covering both supportive care and clinical care; however these meetings need to be further developed to ensure patients are also discussed from a treatment planning perspective, where appropriate. Health professionals are aware of GV Hospice and understand the services they provide. Increased education to health care professionals has resulted in greater awareness that Hospice is not just end of life care. It was highlighted that major improvements and development are required regarding transition of care (discharge planning) in general, as currently it was strongly suggested that there is little accountability to ensure appropriate referrals and discharge planning are completed appropriately. Referrals to appropriate services can be untimely and ad hoc. 71% of consumers stated that a health professional did not check if consumer had concerns about practical issues such as childcare, finances, or transport to and from hospital. It is envisaged that the SCST will greatly assist with increased awareness of referral processes and services available, whilst giving patients options, and the provision of practical information. A major area of concern typically to those patients who reside in rural/regional areas is the burden of travel and accommodation Potentially due to funding and resource constraints it has been identified that there is a lack of service availability and poor service models, which affects availability and access to services such as speech therapy, dietetics, counselling, OT and home oxygen. Centrelink can be a potential added stress for patients who perceive Centrelink has limited understanding or awareness of their situations. 5.6 Reducing Unwanted Variations in Practice Discussion Within West Hume RICS, a Clinical Reference Group (CRG) has been established for the purpose of reducing variations in cancer care, and promoting best practice. The CRG consist of representation across disciplines and locations within the ICS to meet clinician and service delivery needs, and provide the structure through which service improvement opportunities are identified, planned, implemented and evaluated. Based on the data collected through clinician interviews and medical record reviews, a key finding of this patient pathways mapping project is that for the majority of cases in the West Hume region, patient care does follow best practice as outlined by the PMFs. However some opportunities for service improvement have been identified. Palliative care services outside of GV Hospice service area have been identified as an issue relating to patients being discharged back into the community with limited palliative care services in place, especially the provision of pain management. There is evidence of limited availability of GP s to service patients on weekends. Patients Page 30 of 96

31 express difficulty in accessing their GP in a timely manner due to unavailability of appointments and other variables eg; access to transport. To ensure palliative care patients residing in regional and rural areas receive optimal care when returning to the community, examination of palliative care services outside of the GV Hospice service area is required, especially the timely provision of pain management. The level of difference between private and public patients accessing supportive care services in the West Hume region is variable, as private patients don t have the same level of access to services as public patients do. This can impede on patients timely access to their care needs. There is a need to advocate supportive care options to private patients in respect to service provision costs, and a need for professional development and further education for discharge planning and access to services within the private sector. It has also been highlighted when there is only the option of private access locally for a particular service, patients will invariably be referred to a metropolitan public health service to combat the often high costs associated with private services. Whilst this may be appropriate, it needs to be ensured that patients are informed of their options when being referred to either a public or private service. A key finding from the project was the many and varied prerequisites and criteria for patients to access different supportive care services. The research recognised the plethora of supportive care services available to patients within the West Hume region, however navigating these services not only for patients but also health professionals can be challenging due to those varied prerequisites and criteria as mentioned earlier. Therefore, it is important that staff within the cancer sector are continually educated in better utilising existing systems such as the Victorian Human Service Directory (HSD) in accessing appropriate health services for patients. Cancer treatment has the potential for long term side effects relating to fertility if patients are not treated and/or not followed up appropriately. Currently there are no fertility services available locally for patients requiring same and therefore patients are referred to Melbourne for specialised consultancy and/or treatment. It has been clearly identified that those patients in the West Hume region would benefit from a specialised service. At the time of the report, it was noted that a Gynaecological specialist was undertaking training regarding women s fertility management. Whilst this is a positive step forward for female cancer patients, it is imperative that all patients have timely access and specialised fertility service access before the commencement of cancer treatment Findings of Reducing Unwanted Variation in Practice Successes Gaps Based on the data collected through clinician interviews and medical record reviews, a key finding of this patient pathways mapping project is that for the majority of cases in the West Hume region, patient care does follow best practice as outlined by the PMFs. However some opportunities for service improvement have been identified. There is a variation in the level of expertise in palliative pain management across the West Hume region. Private patients don t have the same level of access to supportive care services as public patients. There is a need to advocate supportive care options to private patients in respect to service provision costs, including professional development and further education for discharge planning and access to services within the private sector. Many prerequisites and criteria to access different supportive care services. Page 31 of 96

32 No access to local women s fertility services and specialists. Page 32 of 96

33 6. RECOMMENDATIONS Recommendations for addressing the gaps that were identified in this project were developed in consultation with the Clinical Reference Group. The recommendations have been presented under the four priority areas of multidisciplinary care, care coordination, supportive care and reducing variations in care, and have been categorised as short or long-term according to their ease of implementation. It is the role of Hume RICS to work in partnership with the relevant health services, clinicians, other health professionals and consumers to develop and/or support strategies to address these recommendations in order to improve cancer service delivery. 6.1 Multidisciplinary Care Table 4: Recommendations for multidisciplinary care Number Recommendation Short-term Long-term West Hume RICS supports the increase in frequency and duration of Multidisciplinary Team Meetings in line with the tumour streams. Hume RICS facilitates linkages to metropolitan Multidisciplinary Team Meetings where appropriate. West Hume RICS, through the West Hume CRG: - will advise of the DH cancer service performance indicators - will undertake random clinical record audits of referrals made following MDTMs - will promote to West Hume health professionals best practice models for multidisciplinary care and MDTMs Hume RICS will actively contribute to local and statewide initiatives to improve and implement multidisciplinary team meeting standardised processes. Page 33 of 96

34 6.2 Care Coordination Table 5: Recommendations for care coordination Number Recommendation Short-term Long-term 1 2 Health professionals and consumers should be well informed about the range of different treatment and supportive care options, particularly those available close to the patient s home Hume RICS facilitates education for clinicians aimed at providing them with the skills to encourage consumers to be involved in understanding and managing their own care including a focus on health literacy. 3 Hume RICS continues to identify barriers and strategies for engagement with community health and Home and Community Care (HACC) services, linking rural and remote patients with their local support services where possible. 4 5 Improving communication channels between all health professionals, including GPs through innovative options such as the Human Services Directory (HSD) and e-referral. Review and promote systems to ensure that appropriate patient clinical information including transition of care (discharge planning), is available in a timely manner. This includes but is not limited to : - GPs - Metro to regional hospitals - Private to public and public to private hospitals - Specialist cancer services - Primary health and community services - Palliative care services 6 Support and promote the ongoing development of cancer care management plans and palliative care pathways. 7 Review of local (GV Health) lymphoedema models of care, including early intervention, are supported and implemented 8 Hume Regional Integrated Cancer Service facilitates feedback from PPM interviews regarding administrative support and processes, to ensure it is directed to the appropriate people within the health services. Page 34 of 96

35 6.3 Supportive Care Table 6: Recommendations for supportive care Number Recommendation Short-term Long-term 1 Health services are supported to ensure that all newly diagnosed cancer patients have access to supportive care screening and that these results are documented in the patient s central medical record 2 Supportive care screening is implemented at designated follow up intervals, including recurrence 3 The importance of supportive care discussion within a multidisciplinary team meeting is promoted and that this discussion is documented 4 Health services are supported to develop service models which include prevention, early intervention, treatment and support for cancer patients. Such services may include lymphoedema services, speech therapy, dietetics, counselling and home oxygen 5 Hume RICS continues to provide and promote practical support and information for consumers (including the Hume RICS website, tailored standardised information packs and professional development sessions for specialist cancer staff) and continues to focus on improving information and access to travel, accommodation and financial supports Page 35 of 96

36 6.4 Reducing Unwanted Variations in Care Table 7: Recommendations for reducing unwanted variations in care Number Recommendation Short-term Long-term Hume RICS will continue to inform Federal and State Government Departments of the need for public radiotherapy services in West Hume region. An education needs analysis should be conducted in order to develop and facilitate appropriate professional development for a broad range of health professionals involved in the care of patients with cancer; particularly in relation to issues such as death and dying, treatmentrelated sexual issues, health literacy and self care In consultation with the Goulburn Valley Medicare Local, Hume RICS provides GPs with access to oncology/specialist referral criteria and pathways Medical oncology education for small rural health services and GPs should be facilitated, including pain and side effect management for cancer patients Hume RICS investigates links to support local fertility services/specialists. Systems for timely access to allied health services and practical supports are developed, particularly for patients in private hospitals Development of relevant policies, procedures & guidelines to support reducing unwanted variation in care Page 36 of 96

37 7. DISCUSSION The aim of this Patient Pathway Mapping Project was to identify opportunities for whole system improvement and development, for consistent and coordinated cancer care across the Hume Region. In accordance with the objectives, this project identified the successes and gaps with respect to how well the actual patient pathway aligned with the optimal patient pathway described by the Patient Management Framework. Based on the findings of this project, key recommendations were identified and classified as short-term or long-term priorities for Hume RICS to incorporate in future cancer service improvement activities as directed by the Hume RICS Strategic Plan. This project was able to collect broad data from a variety of sources, including interviews with clinicians, health professionals and consumers, as well as from several local and statewide data sources. However, several limitations of this project were identified, including the difficulty in obtaining an accurate and thorough understanding of the patients journey from assessing medical records alone. This meant that a review of the medical record where the patient received the bulk of their treatment may not accurately document the entire patient journey. Improving the transfer of documentation between service sites is a priority area for service improvement. It was also not possible within the scope of this project to review the medical records of patients receiving components of their care at metropolitan sites. Future projects could investigate opportunities for review of both regional and metropolitan health service sites to gain a thorough understanding of all treatment and support provided. Due to the limitations of the consumer recruitment strategy, it was sometimes difficult to recruit consumers with a relatively recent diagnosis of some of the lower volume cancers. Future patient pathway mapping projects could investigate recruiting consumers prospectively to document the entire patient journey from diagnosis onwards. Whilst there was positive engagement from the health professional community to participate, it was sometimes difficult to obtain information about all the tumour types examined in this project due to the limited number of specialists for particular tumour streams. However, it is acknowledged that many of the areas identified for improvement are general across all tumour types (eg. improving communication processes). In summary, this project has identified the gaps and successes with respect to the actual patient pathway in the West Hume Cancer Network as compared to the optimal patient pathway described by the Patient Management Framework. The findings of this project have enabled key recommendations to be developed and these should form the basis of future cancer service improvement activities for Hume RICS, in partnership with health services across the network. Page 37 of 96

38 8. ACKNOWLEDGMENTS The following West Hume RICS current and former staff members are acknowledged for their contributions to this project: Gemma Kenny, Allison Hartney, Rebecca McAllister, Clare McCarthy, Carole Mott and Christine Ryan. This project was conducted in partnership with the Border East Hume RICS team, and along with the staff of the Directorate of Hume RICS, they are acknowledged for their contributions: Megan Wright, Renee Scott, Rebecca Myers, Paula Fraser, Clare Dunin, Nick Brown, Jenny Donnelly, Robyn Sharman, Liz Macpherson, Kathy Vickers, Jenny O Connor, Vanessa Sariman, Marg McKenzie, Alex McKenna and Theresa Richards. The participation of the many consumers, clinicians, health professionals and staff members of our partner health services in this project was pivotal and all participants are acknowledged and thanked for their significant input to this project. The Hume RICS Strategic Manager, Chris Packer and West Hume Clinical Director, Dr Mahesh Iddawela are acknowledged for providing strategic management to this project. The West Hume Clinical Reference Group and Cancer Network Committee provided overall guidance regarding the objectives and scope of this project, as well as prioritising the recommendations for cancer service improvement activity arising from this project. The Hume RICS Executive are acknowledged for their support of this project across the Hume region. Page 38 of 96

39 9. REFERENCES 1,8 Clinical Networks: A framework for Victoria 2008 Department of Human Services 2,15,22,23 Patient management frameworks 2006 Department of Human Services 3 Patient management framework Head and Neck tumour stream: larynx, pharynx and oral cancer 2006 Department of Human Services 4 National Survey of NHS Patients Questionnaire ( ), Centre for Social Research, Picker Institute Europe 5 Victorian Cancer Patient Experience Survey Tool 2011, Victorian Department of Health 6,7,11,17 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services 9,13,14 A Cancer Services Framework for Victoria 2003 Department of Human Services 10 Victoria s Cancer Action Plan , 2008 Department of Human Services 12,24 Clinical excellence in cancer care, a model for safety and quality in Victorian cancer services 2007 Department of Human Services Multidisciplinary Care Literature review June 2012 Department of Health 19 Multidisciplinary Team Meeting Toolkit 2006 Department of Human Services 20 Multidisciplinary team meetings in Victoria, Monitoring progress towards achieving best practice cancer care Department of Health 21 Linking cancer care: A guide for implementing coordinated cancer care 2007 Department of Human Services 25 Service and Workforce Planning, Portfolio Services and Strategic Projects Division Feb 2009 Department of Human Services 26 Victoria in Future 2012: Population and household projections for Victoria and its regions , Department of Planning and Community Development 27 NSW Statistical Local Area Population Projections , NSW Department of Planning 28 Data obtained from Victorian Department of Health and NSW Cancer Registry 29,30,35 Data obtained from Cancer Council Victoria and NSW Cancer Registry 31,33 Data obtained from Cancer Council Victoria 32,34 Data obtained from NSW Cancer Registry Page 39 of 96

40 10. APPENDICES Appendix 1: Patient Management Frameworks toolkit Patient Management Frameworks Tools to assist in working with local tumour groups The Patient Management Frameworks are a guide to the optimal care management of patients in each tumour stream. They are intended to improve patient outcomes by facilitating consistent care based on evidence and best practice across the state. They can be used in a variety to ways: Provide a uniform approach across the State and a common language for discussion about what is required for optimal care for cancer patients Can focus discussion on steps of the patient journey to identify where improvements can be made Provide a benchmark to identify what needs to happen to improve care Assist in identifying the priority areas that need to improve Compare practice across an Integrated Cancer Service. The tools in this package are designed to assist in these activities. You may wish to use them as they are or to modify them to meet you specific needs. Page 40 of 96

41 Patient Management Frameworks A Guide to their use Outlined below is a guide and some examples of what the Integrated Cancer Services may wish to consider when implementing the PMF s. More specifically, the types of questions the Local Collaborating Tumour Groups (LCTG s) may wish to ask about the services/care they provide. The guide uses the priority outcomes for the Integrated Cancer Services as a reference point, with the aim of maximising integration of the information. This is not an exhaustive checklist but rather a starting point when implementing the PMF s in your LCTG s within your Integrated Cancer Service. Steps of the patient pathway Multidisciplinary Care Care Coordination Psychosocial and Supportive care Variations in Care At Community Level Is accurate, understandable information Are there clear screening processes in the Is there an awareness of where screening available and accessible to the general community regarding the patients risk of is accessible to patients within your community about the signs and symptoms anxiety and depression? Are you clear tumour group? (S&S) that need to be reported to a GP, which may be suggestive of this tumour type? Are GPs aware of the S&S suggestive of this type of tumour, as well as patients that are at higher risk of the tumour due to family/personal history? within your tumour group what the community capacity is, to contribute to supportive care and who to refer to? Is there data to review these processes? Initial diagnosis and referral Is the process for referring patients for discussion by the MDT known and understood by the relevant healthcare professionals? Are members of the MDT clear about where the particular care can be provided within their tumour group? Is there agreement between different HPs (GPs, surgeons, oncologists) of what investigative tests are needed, and who is responsible for ordering/undertaking them for this tumour group? Are there clear referral pathways between service providers within your tumour group? Are there written protocols as appropriate to ensure clear understanding of processes and roles? What is in place to support the processes required? (eg common referral templates inclusive of all information required) Is there clear understanding of information that the consumer needs at this stage? Do all patients receive relevant information about their disease, diagnostic procedures, treatment options, treatment effectiveness, possible adverse effects, and outcomes? Are there clear referral pathways and protocols to specialised supportive services within your tumour group? Are there clear referral processes in place to ensure the patient receives the necessary assessment by the appropriate practitioner? Determination of treatment Multidisciplinary Care Care Coordination Psychosocial and Supportive care Variations in Care Is there a MDT discussion/meeting that Is consent of the patient sought prior to Is there an identified person to Are there agreed protocols and pathways takes place to prospectively plan the multidisciplinary discussion? communicate the treatment and care plan for determining patient treatment within patients care? Has case conferencing and/or a MDT to the patient? your tumour group? Are patients given full information on meeting been conducted as appropriate to Is there adequate staff training within your Is there an agreed process of involving advantages and risks and different options ensure the care plan is coordinated and tumour group in identifying and patients in decisions about their recommended by the MDT for treatment, then relayed to the patient? responding to supportive care needs? treatment?

42 Treatment Follow-up Care Determination of plans and treatment for recurrence End of Life Care with sufficient detail to allow them to play an active part in decision making? Has the MDT developed protocols on when the patients care plan will be discussed? Does the MDT record include treatment and care recommendations? Does each patient have a written plan for his or her treatment or follow-up, which addresses the relevant issues for that particular tumour group? Is treatment care planning for recurrence undertaken by a MDT including the patients GP? Are there relevant MDT members and services in place that can assist the patient in dealing with end of life/care issues? Progression of care should be coordinated ensuring the patient, GP and MDT members are clear on their responsibilities within the tumour group. Are there mechanisms in place to ensure this has been documented in the patient record? Are there mechanisms in place to ensure continuity of care? (eg protocols/systems of communication between service providers public/private, acute/gp to ensure relevant staff are informed of each stage of the patients progress). Does the patient have a care plan and understand the planned treatment and processes/sequence? Is there access to a discharge summary template and are the relevant team members aware of the referral mechanisms within your tumour group? Is patient decision-making considered when planning coordinated care/treatment for patients in this tumour group? Is the care that is coordinated considerate to the needs and wishes of the patient and family? Are there clear communication channels between the patient/families and care providers? Do you ensure that patients/carers/families are provided with information in a variety of formats to meet their needs? (eg written or verbal; taped/written record of consultations; facilitate the use of an interpreter if necessary). Are patients informed about sources of social and practical help, such as support groups and helplines? Do patients have continuing access to a key contact from the MDT? Is there provision for patients to give feedback on their experience of treatment, facilities and services they receive? Is the appropriate MDT in place to assist his or her family through physical, psychological, emotional and spiritual needs? For many patients and families this may include bereavement support Is your workforce competent? How do you know? What data do you collect to measure this? Is there timely re-assessment by appropriate team members? Are there clear communication strategies in place between team members regarding follow-up care? Are there protocols in place to clearly establish the plans and treatment for recurrence in this tumour group? Are there appropriate end of life services available to patients? Are there agreed referral processes between cancer and palliative care services? Page 42 of 96

43 PATIENT MANAGEMENT FRAMEWORKS - WORKSHEET TUMOUR GROUP: From the patient management framework, identify issues, gaps and inconsistencies, and then agree on priority initiatives. KEY ASPECTS TO ADDRESS Multidisciplinary Care At Community Level Initial diagnosis and referral Determination of treatment Treatment Follow-up care Determination of plans and treatment for recurrence End-of-life care Care Coordination Psychosocial and Supportive Care Reducing Variations Care in Agreed priority initiative/s Page 43 of 96

44 Identifying gaps in care coordination Using the questions below, complete the columns in the table below: 1. Patient Perspective Thinking from the patient perspective what information provision/ support needs to happen at this point at the interface between the health professional and the patient to ensure continuity of care? 2. Health Professional perspective In the role of a health professional, what information do you need to get at this stage and what do you need to pass on to others How and to whom? 3. Processes needed What needs to happen behind the scene to ensure continuity between this stage and the next? Critical Point Patient perspective Health Professional Perspective Processes Initial diagnosis and referral Determination treatment of Page 44 of 96

45 Treatment Critical Point Patient perspective Health Professional Perspective Processes Follow up care Determination of plan and treatment for recurrence End of life care Page 45 of 96

46 IMPACT Decision Making Grid EFFORT Difficult to do Easy to do Major improvement Build a realistic strategy to get there DO IT Minor improvement Park it DO IT Evaluate your strategies or initiatives to determine which ones you are going to pursue Page 46 of 96

47 Appendix 2: Patient Pathway Mapping Health Professional Interview Questions Please have a look at the Patient Management Framework (Patient Pathway) as set out by the Victorian Department of Health. Please consider the following questions (where applicable). 1. Could you please advise whether you think this is an accurate representation of what occurs for the majority of your patients? (Is this the usual path that they take?). 2. Are there any areas listed that you find are difficult to access and why? 3. At a point for referral along the patient pathway, i.e. initial diagnosis (General Practitioner), where do the majority of your patient referrals come from? 4. What progression of disease do the majority of patients have when they attend for their first appointment with you? I.e. post diagnostic work (breast examination/mammogram/biopsy). 5. What level of support do you believe you have in your service delivery? (Do you believe that you are well support professionally i.e. have access to services than enable you to care for your patients along the patient pathway)? 6. In your current professional position, do you believe that are any gaps or duplications in providing optimal patient care? What are these are do you know why they have occurred? I.e. preliminary workup by the patients General Practitioner before being referred to specialist. 7. In what form to you complete referrals, as required, to other health professionals or supportive care organizations (i.e. letters, phone calls, s etc). 8. What are your views on care coordination? Do you believe it is done well or not? 9. Do you believe there are any areas that are of concern to you regarding the patients treatment pathway? I.e. do you believe you have timely access to investigation and treatment modalities? Are there any areas of diagnostic treatment or testing that is impacting on the patient treatment? 10. Are all the patients that you see that have a diagnosis of cancer discussed at a MDT meeting? Do you discuss with your patient s multidisciplinary care and the role of multidisciplinary teams meetings? At what stage are your patients presented at a MDT meeting, i.e. pre or post surgical intervention? 11. Do you have your own database or do you utilize a central database to house patient information? Is this information shared with Health Information Management (patient medical records) at all treating hospitals/health services? Page 47 of 96

48 12. In general, what information do you give to your patients regarding their diagnosis, and at what point after investigations/diagnosis do you give patient s information? 13.Do you see private, public or a combination of both types of patients? Generally, what percentage would you see for each? 14. What do you do if it is a complicated or rare tumor? Do you send tumor markers off to other sites nationally or internationally? 15.Do you offer and give access to all eligible patients for clinical trials? How is this determined? Do you receive regular information about clinical trials that people are able to access? 16.Which hospitals in the metropolitan region so you have links to and refer to? Why? Page 48 of 96

49 Appendix 3: Consumer Participant Questionnaire Participant Questionnaire - Patient Pathways Mapping Hume Regional Integrated Cancer Service is undertaking a service improvement project entitled Patient Pathway Mapping. Your participation in this project will enable Hume RICS to identify areas for improvement in patient access to cancer care services. This questionnaire is based on The National Survey of NHS Patients Questionnaire ( ) from the Centre for Social Research, Picker Institute Europe and the Victorian Department of Health s Victorian Cancer Patient Experience Survey Tool. The questionnaire is structured into four parts: 1. About You 2. Finding out what was wrong with you 3. Treatment: Planning and Management, including Surgery 4. Treatment Journey, including Radiotherapy and Chemotherapy The structure of the questionnaire means that a great deal of quantitative data will be obtained. There are, where possible, areas in the questionnaire where participants can make comments and share their opinion regarding how cancer services could be improved. Page 49 of 96

50 Part 1: About You. This section asks for some background information about you and your cancer treatment. These questions help us get an idea of who is participating in the study. 1. Are you male or female? Male Female 2. What age bracket do you belong to? years years years years years Over 70 years 3. What is your ethnic background? Aboriginal Torres Strait Australian Other Describe: 4. What part of the Healthcare Sector do you belong to? Public Private DVA 5. What is your postcode? 6. What is your primary cancer diagnosis? Page 50 of 96

51 Part 2: Finding out what was wrong with you. When cancer is suspected, most people are referred to see a specialist doctor. 1. What was the outcome of your GP appointment? Sent for tests Referred to a Specialist Doctor Referred to a Hospital Review appointment with your GP Nothing further Other Sometimes people will have several tests before a diagnosis of cancer is given. 2. Who gave you the result of the test that showed that you definitely had cancer? GP... Surgeon... Medical oncologist... Radiation oncologist... Haematologist... Other (please specify) 3. Approximately how much time was spent explaining to you what was wrong? Less than 5 minutes 5 to 15 minutes 15 to 30 minutes More than 30 minutes Can t remember 4. Did you feel the time taken was adequate? Yes No 5. When you were first told what was wrong, did you receive any written information? Yes No Page 51 of 96

52 6. How useful did you find this written information? Very useful Useful Not very useful Can t remember 7. When you were first told what was wrong, were treatment options explained to you? Yes No 8. Is there anything else you feel is important that you would like to add? Page 52 of 96

53 WHEN YOU WERE TOLD YOU HAD CANCER The below questions relate to how you were told you had cancer. WHEN YOU WERE TOLD YOU HAD CANCER Yes, definitely Yes, I think so No, I don t think so No, definitely not When my doctor told me that I had cancer: a. It was at a face-to-face appointment b. I was told before the appointment that I could have a friend or family member with me if I wanted to. c. I clearly understood the explanation my doctor had given me Within a reasonable time of being told that I had cancer: d. I was given written information about cancer e. I was given a sheet with suggestions about questions that I might like to ask at my next appointment. f. I was told how I could get further information about cancer e.g. websites, booklets, cancer helpline Overall, when I was diagnosed with cancer: g. I received good quality care Page 53 of 96

54 Part 3: Treatment: Planning and Management, including Surgery. PLANNING CANCER TREATMENT / MANAGEMENT The questions below ask about care given to you by a health professional when treatment (e.g. surgery, radiotherapy, chemotherapy) was being planned. This means any professional involved in your cancer care, for example, doctors, nurses, radiation therapists, social workers, physiotherapists, psychologists etc. PLANNING CANCER TREATMENT / MANAGEMENT Yes, definitely Yes, I think so No, I don t think so No, definitely not The doctor(s) involved in planning my cancer treatment/ management: a. Gave me information about the advantages and disadvantages of different treatment options. b. Gave me information on the possible short-term side effects of treatment(s) (e.g. nausea, pain, fatigue). c. Gave me information on the possible long-term side effects of treatment(s) (e.g. reduced fertility, lymphoedema). d. Asked my permission to discuss my case with other health professionals (i.e. a multidisciplinary team) When my cancer treatment was being planned a health professional: e. Asked me how much information I wanted. f. Encouraged me to be involved with planning my treatment g. Encouraged me to ask any questions about treatment. h. Gave me information about support services (e.g. the cancer helpline, support groups or other services). i. Told me that counselling services were available if I wanted them. j. Told me about additional services (e.g. nutritional advice, occupational therapy, physiotherapy, support groups) that I could access during my cancer care. k. Checked if I had concerns about practical issues such as childcare, finances, or transport to and from the hospital. l. Made me feel comfortable to ask any questions I had. m. Checked that I understood the information provided to me Overall: n. The health professionals involved in my care helped me to make a treatment decision that I was comfortable with Page 54 of 96

55 SURGERY IF YOU HAVE HAD SURGERY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE SURGERY, GO TO NEXT THE SECTION, PART FOUR: TREATMENT JOURNEY, INCLUDING RADIOTHERAPY AND CHEMOTHERAPY. Surgery to treat cancer usually involves an operation to remove some or all of the cancer. This does not include biopsies. If you have had more than one surgery to treat cancer, please think about the first surgical treatment that you had when answering the questions. 1. Did you have surgery to treat cancer? Yes... No Did you have surgical treatment in a: Public hospital or public clinic... Private hospital or private clinic... Not sure Where did you have your surgical treatment? (Please indicate name of town/suburb or postcode of town/suburb where hospital is located) Town/Suburb OR Postcode Sometimes other treatments or tests need to be completed before a person is ready to be booked in for surgery. 4. Once you were ready to be booked in for surgery, how long did you wait until you actually had surgery? 3 days or less... More than 3 days, but within a week... More than a week, but within 2 weeks... More than 2 weeks, but within 4 weeks... More than a month... If the length of time was more than a week, was this due to: Personal decision to wait... Surgery waiting times Was the date of this hospital admission ever cancelled or postponed by the hospital? Yes, once Page 55 of 96

56 Yes, more than once No, never Not sure 6. How far did you have to travel to get to the Hospital? Less than 10 km km km More than 100 km 7. During this admission did you feel you were given the opportunity to be involved in your care and treatment? Yes, all the time Yes, some of the time No, not really Can t remember 8. During this admission did you feel both yourself and your family were provided with adequate information about you? Too little information Just enough information Too much information Not sure 9. Before you left Hospital, did staff enquire about your social and home situation? Yes No Can t remember 10. Before you left Hospital were you offered any home support? Yes No Can t remember Type: 11. Before you left Hospital were you given written information about what you should or need to do after discharge? Yes No Can t remember 12. Before you left Hospital were you given a contact person if you had problems or were worried? Page 56 of 96

57 Yes No Can t remember 13. Before you left Hospital were you given a clear plan of future treatment and Doctor appointments? Yes, and I completely understood what I was told Yes, and I understood some of what I was told Yes, but I did not understand what I was told No, this was not explained to me Can t remember 14. Before you left Hospital were you given information about social / financial benefits you could access? Yes No Can t remember 15. Did you feel your General Practitioner was provided with the appropriate information about your hospital admission and treatment? Yes No Can t remember 16. Would you like to comment about anything else that was important to you or difficult for you during this admission? Page 57 of 96

58 SURGERY IF YOU HAVE HAD SURGERY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE SURGERY, GO TO THE NEXT SECTION, PART FOUR: TREATMENT JOURNEY, INCLUDING RADIOTHERAPY AND CHEMOTHERAPY. SURGERY Yes, definitely Yes, I think so No, I don t think so No, definitely not Before having surgery for cancer I was given information about: a. Why the surgery was necessary b. How to prepare for surgery (e.g., if changes to other medications were needed) c. How I would feel after surgery Throughout my surgery planning and follow up: d. I was given information about what I could do to manage any physical side effects at home e. I was able to ask any questions that I had f. Any pain I had was well managed. If you did not experience any pain, please check this box. Page 58 of 96

59 Part 4: Treatment Journey, including Radiotherapy and Chemotherapy. THE FOLLOWING QUESTIONS RELATE TO POSSIBLE TREATMENTS YOU MAY HAVE HAD OTHER THAN SURGERY. TREATMENT JOURNEY Radiotherapy Chemotherapy Hormone Therapy Other a. How far did you have to travel for your treatment? Less than 10 km km km More than 100 km b. Were you given information on travel allowances you could access? Yes No Can't remember c. Was the purpose of this treatment explained to you prior to the first appointment? Yes, and I completely understood what I was told Yes, and I understood some of what I was told Yes, but I did not understand what I was told No, this was not explained to me Can t remember Page 59 of 96

60 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other d. On arrival for your treatment were you given the opportunity to ask questions? Yes, I was given plenty of opportunity Yes, but I was not given much time No Can t remember e. On arrival for your treatment were you asked about how you were feeling about your condition and treatment? Yes, by the Doctors Yes, by the Nurses Yes, by the Doctors & Nurses No Can t remember f. During your treatment were you given further explanations about what to expect? Yes, and I completely understood what I was told Yes, and I understood some of what I was told Yes, but I did not understand what I was told No, this was not explained to me Can t remember Page 60 of 96

61 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other g. During your treatment did you have adequate privacy? Yes, all of the time Yes, some of the time No Can t remember h. During your treatment did you experience any complications or side effects? Yes, major side effects/complications Yes, minor side effects/complications No Can t remember i. Did you feel these complications or side effects were managed well? Yes, very well Yes, but things could have been better No Can t remember Page 61 of 96

62 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other j. During this treatment were you offered any social or psychological supports? Yes, by the Doctors Yes, by the Nurses Yes, by the Doctors & Nurses No Can t remember k. Prior to leaving were you given a contact person should you become concerned? Yes: Who No Can t remember l. Prior to leaving were you given the opportunity to ask questions about any of your concerns? Yes No Can t remember Page 62 of 96

63 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other m. How frequent were your treatments planned for? Daily Weekly Fortnightly Monthly Other: n. Have any of your treatments been postponed or cancelled? Yes, once Yes, more than once No, never Not sure Page 63 of 96

64 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other o. During subsequent treatments were you given the opportunity to ask questions? Yes, all of the time Yes, some of the time No Can t remember p. During subsequent treatments did you feel socially and psychologically supported? Yes, all of the time Yes, some of the time No Can t remember q. During your treatment phase how often did your General Practitioner review you? Weekly or more often Every couple of weeks Monthly Infrequently Not at all Can t remember Page 64 of 96

65 TREATMENT JOURNEY CON'T Radiotherapy Chemotherapy Hormone Therapy Other r. During your treatment did you feel your General Practitioner had been kept informed about you? Yes, all of the time Yes, some of the time No Can t remember s. What have been your main concerns been about during your treatment? Actual treatment and side effects My illness and prognosis My physical well being My social situation My family and significant others My financial situation Coping with cancer Other t. Is there anything you feel you needed during your treatments that you did not get? u. Would you like to comment about anything else that is important to you about your treatment journey? Page 65 of 96

66 RADIOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING RADIOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING RADIOTHERAPY, GO TO THE NEXT QUESTION, CHEMOTHERAPY. Radiotherapy is the use of radiation to destroy cancer cells in the body, to slow the growth of cancer, or to reduce the symptoms of cancer. External radiotherapy is given using a machine that directs radiation onto the body. Internal radiotherapy (brachytherapy) involves temporarily putting thin tubes, seeds or rods containing radioactive material inside the body. 24. Did you have radiotherapy treatment for cancer? Yes... No Did you have radiotherapy treatment in a: Public hospital... Private hospital... Not sure Where did you have your radiotherapy? (please indicate name of town/suburb or postcode of town/suburb where hospital is located) Town/Suburb OR Postcode 27. Did you have to arrange different accommodation while receiving radiotherapy? For example, this might have been at the home of a friend or relative or in a hotel or hostel Yes... No... Page 66 of 96

67 Sometimes other treatments or tests need to be completed before a person is ready to start radiotherapy. 28. Once you were ready to start radiotherapy, how long did you wait until having your first radiotherapy treatment? 3 days or less... More than 3 days, but within a week... More than a week, but within 2 weeks... More than 2 weeks, but within 4 weeks... More than a month... If the length of time was more than a week, was this due to: Personal decision to wait... Radiotherapy treatment waiting times... RADIOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING RADIOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING RADIOTHERAPY, GO TO THE NEXT QUESTION, chemotherapy. RADIOTHERAPY Yes, definitely Yes, I think so No, I don t think so No, definitely not Before starting radiotherapy for the first time I was given information about: a. Why the radiotherapy was necessary b. How to prepare for radiotherapy (e.g., if changes to other medications were needed) c. What having radiotherapy would feel like d. How I would feel after radiotherapy Throughout my radiotherapy treatment and follow-up: e. I was given information about what I could do to manage any physical side effects at home f. I was able to ask any questions that I had g. Any pain I had was well managed If you did not experience any pain, please check this box. Page 67 of 96

68 CHEMOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING CHEMOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING CHEMOTHERAPY, GO TO THE NEXT SECTION, FINISHING CANCER TREATMENT. Chemotherapy is the use of drugs, which aim to destroy cancer cells in the body, or to stop them from multiplying and spreading. It can be given through a drip that goes into a needle in your vein, through an injection, as a tablet that you swallow, or as cream that s put on surface of the skin. 29. Did you have chemotherapy treatment for cancer? Yes... No Did you have chemotherapy treatment in a: A public hospital... A private hospital... Somewhere else... please specify Not sure Where did you have your chemotherapy? (please indicate the name of the town/suburb or the postcode of the place where you had chemotherapy?) Town/Suburb OR Postcode 32. Did you have to arrange different accommodation while receiving chemotherapy? For example, this might have been at the home of a friend or relative or in a hotel or hostel Yes... No... Page 68 of 96

69 Sometimes other treatments or tests need to be completed before a person is ready to start chemotherapy treatment. 33. Once you were ready to be booked in for chemotherapy, how long did you wait until your first chemotherapy treatment? 3 days or less... More than 3 days, but within a week... More than a week, but within 2 weeks... More than 2 weeks, but within 4 weeks... More than a month... If the length of time was more than a week, was this due to: Personal decision to wait... Chemotherapy treatment waiting times If you have not finished treatment, are you currently having: Chemotherapy... Radiotherapy... Hormone therapy... Other (please specify) Page 69 of 96

70 CHEMOTHERAPY IF YOU HAVE HAD OR ARE CURRENTLY HAVING CHEMOTHERAPY, PLEASE ANSWER ALL QUESTIONS. IF YOU DID NOT HAVE OR ARE NOT CURRENTLY HAVING CHEMOTHERAPY, GO TO THE NEXT SECTION - FINISHING CANCER TREATMENT. CHEMOTHERAPY Yes, definitely Yes, I think so No, I don t think so No, definitely not Before starting chemotherapy for the first time I was given information about: a. Why the chemotherapy was necessary b. How to prepare for chemotherapy (e.g., if changes to other medications were needed) c. How I would feel after chemotherapy Throughout my chemotherapy treatment and follow up: d. I was given information about what I could do to manage any physical side effects at home e. I was able to ask any questions that I had f. Any pain I had was well managed. If you did not experience any pain, please check this box. g. Any nausea I had was well managed. If you did not experience any nausea, please check this box Page 70 of 96

71 FINISHING CANCER TREATMENT IF YOU HAVE FINISHED TREATMENT, PLEASE ANSWER ALL QUESTIONS BELOW. IF YOU HAVE NOT YET FINISHED TREATMENT, PLEASE GO TO THE NEXT SECTION - CONTINUITY OF CARE. FINISHING CANCER TREATMENT Yes, definitely Yes, I think so No, I don t think so No, definitely not Towards the end of cancer treatment I was given: a. A written plan that included information about my cancer treatments and recommended follow-up Towards the end of cancer treatment I was given information about: b. Which follow up tests I might need c. When I would need to have follow-up tests d. The purpose for taking each of my medications e. How to take each of my medications, including how much I should take and when. f. How to manage any ongoing symptoms or side effects. g. Which new symptoms might mean that cancer has come back. h. What I could do to stay as healthy as possible in the future (e.g. information about exercise, diet, stopping smoking). i. How people commonly feel emotionally after finishing treatment j. Where I could get extra support if I needed it Overall, toward the end of cancer treatment: k. I knew where I could get help for any problems related to cancer that might come up over the next few months Page 71 of 96

72 CONTINUITY OF CARE THE QUESTIONS BELOW RELATE TO YOUR CONTINUITY OF CARE. IT HELPS US IDENTIFY IF YOUR CARE WAS COORDINATED. CONTINUITY OF CARE Yes, definitely Yes, I think so No, I don t think so No, definitely not From when I was diagnosed until now: a. There has been a health professional that I could contact if I had any questions about my care. b. My GP has been kept well informed about my cancer care. c. The health professionals involved in my care appeared well informed about my cancer care If more than one treatment centre was involved in your care, please answer the following question: The treatment centres involved in my care: d. Were well informed about the care I received from other hospitals or health services e. Co-ordinated my appointments to suit my needs THANKYOU FOR TAKING THE TIME TO COMPLETE THIS QUESTIONNAIRE. Page 72 of 96

73 Appendix 4: End of Life Care Pathway parts A & B (GV Health) MR290 End of Life Care Pathway (Part A MR291 End of Life Care Pathway (Part B Page 73 of 96

74 Appendix 5: Background to the Patient Pathways Mapping Project A5.1 Frameworks to guide cancer reform in Victoria The need for improved delivery of cancer services along with improved outcomes for patients and their families has been identified as a priority for both State and Federal governments. The Victorian Department of Health has a significant cancer reform agenda that aims to improve planning and delivery of treatment and support to patients so that appropriate care is provided in a timely manner as close to the patients home as possible. 9 Two leading policy documents guiding Victoria s cancer reforms are the Cancer Services Framework and Victoria s Cancer Action Plan (VCAP). A5.1.1 Cancer Services Framework for Victoria In 2002, the Department of Health (formerly the Department of Human Services) commissioned the development of a Cancer Services Framework for Victoria. 10 The principles upon which the Cancer Services Framework has been based include: multidisciplinary cancer care to ensure effective and efficient patient management maximal geographic access for patients and their carers/families high quality and safe cancer services. The Cancer Services Framework identified structures and processes that support optimal cancer care. These include the development of the Integrated Cancer Services (ICS) to drive change at the local level, and the development of the Patient Management Frameworks to guide the delivery of consistent cancer care for a range of tumour streams. The Cancer Services Framework also targets four priority service improvement areas for reform: multidisciplinary care care coordination supportive care reducing unwanted variation in practice (quality monitoring and support) A5.1.2 Victorian Cancer Action Plan Released in December 2008, Victoria's Cancer Action Plan has been developed to provide policy leadership and common goals for Government, health services, research institutes, peak bodies, health professionals and consumer organisations working in the cancer control arena in Victoria. VCAP has measurable targets across four key action areas including prevention, research, treatment and support. 11 The relationship between the various structures and components of the cancer reform to drive service improvement is depicted in Figure. 9 Clinical Networks: A framework for Victoria 2008 Department of Human Services 10 A Cancer Services Framework for Victoria 2003 Department of Human Services 11 Victoria s Cancer Action Plan , 2008 Department of Human Services Page 74 of 96

75 Figure 4: Systematic approach to quality in cancer services Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services Page 75 of 96

76 A5.2 The Victorian Integrated Cancer Services The Cancer Services Framework proposal of the formation of a service system led to the establishment of the Integrated Cancer Services (ICS) in 2004, which includes three metropolitan and five regional ICS based on specified geographic populations and one state wide paediatric service. The role of the Integrated Cancer Services is to build partnerships; improve cancer care; and plan cancer services across a geographic area based on access, appropriateness and effectiveness. 13 Figure 5: Map of the Victorian Integrated Cancer Services Each ICS is comprised of clusters of hospitals and associated health services that deliver services for people with all type of cancers within a geographic area. The philosophy of an ICS is that hospitals and primary and community health services develop integrated care and defined referral pathways for the populations they serve. This promotes more effective local coordination of care for cancer patients, and a more rational, evidence-based approach to cancer service planning and delivery, and provides a platform through which improvements in cancer service delivery and patient care can be implemented. 14 A5.3 Establishment of tumour streams The Cancer Services Framework for Victoria has recommended that organ or system specific tumour streams be adopted to reduce variation in care. 15 Tumour streams were developed as a means to drive 13 Clinical excellence in cancer care, a model for safety and quality in Victorian cancer services 2007 Department of Human Services 14 A Cancer Services Framework for Victoria 2003 Department of Human Services 15 A Cancer Services Framework for Victoria 2003 Department of Human Services Page 76 of 96

77 service improvement and ensure consistency across Victoria. As ten types of tumours account for more than 90 per cent of the total incidence of cancer in Victoria, the recommended tumour streams were therefore classified as: 1) Genito-urinary cancers, including cancers of the prostate, bladder, kidney, and testis 2) Colorectal cancer 3) Breast cancer 4) Lung cancer 5) Skin cancers, notably melanoma 6) Haematological malignancies, encompassing lymphomas, leukaemia, and myeloma 7) Gynaecological cancers 8) Head and neck cancers 9) Upper gastro-intestinal cancers, encompassing cancers of the oesophagus, stomach, pancreas, and hepato-biliary system 10) Central nervous system cancers The concept of tumour streams includes the development of local collaborating tumour groups based on the ten tumour streams, statewide mechanisms to support tumour stream development, standards of care and facility standards, clinical and performance indicators and classification of cancer services based on the range of services they can provide. A5.4 Patient Management Frameworks Cancer care in Victoria is guided by the Patient Management Frameworks (PMF), published by the Victorian Department of Health (formerly the Department of Human Services) in The PMFs were developed to provide a consistent statewide approach to care management across the ten tumour streams and are intended to improve patient outcomes by focussing discussion on the critical steps of the patient journey in order to identify priority areas for improvement. They aim to reduce unwanted variation in care and describe optimal referral pathways for cancer care from diagnosis to end-of-life care, inclusive of treatment and supportive care. The PMFs have been developed in collaboration with a wide range of practitioners, consumers and carers. Wherever possible, they are based on current best practice, including clinical guidelines, care pathways, standards and research. In many cases, however, they are a statement of consensus regarding currently accepted approaches to treatment. 17 The PMFs: Provide a clear description of the care pathway, identifying the critical points along that pathway and the optimal model of care Set out the key requirements for the provision of optimal care Guide the patient journey to ensure patients with cancer and their families receive optimal care and support The PMFs identify seven critical steps in the patient journey, as represented in Figure below. Whilst these seven steps are represented as a linear model, it is clear that in practice patient care does not always occur this way. It is important for all patients to be assessed and managed appropriately throughout each stage of their individual journey, however, not all patients will progress through each of the seven steps of the PMF due to factors such as timing of diagnosis, prognosis, management decisions and patient decisions. It is also 16 Patient management frameworks 2006 Department of Human Services 17 Page 77 of 96

78 important to note that the PMFs are not designed for accreditation purposes, but may be used to facilitate local benchmarking, service mapping and service development. They are not rules and do not carry a sense of prescription. Figure 6: The seven steps of the patient journey identified in the PMFs To accompany the PMFs, a toolkit was also developed by the Department of Health to assist the ICS to identify priority areas when implementing the PMFs (Appendix 1). This toolkit provides a guide to evaluate the implementation of the PMFs across the seven stages of the patient journey (as presented in Figure ), for each of the four priority service improvement areas for reform (multidisciplinary care, care coordination, supportive care, reducing unwanted variation in practice). The guide contains a series of prompts/questions in order to identify the gaps and successes in implementation of the PMFs. This guide was adopted for use in the current project across all tumour streams in order to provide a direct link between the relevant PMF and the successes/gaps in the implementation of the PMFs in the Hume region. A5.5 The four priority service improvement areas for statewide reform As described previously, the Cancer Services Framework for Victoria has identified the four priority service improvement areas for reform as: multidisciplinary care care coordination supportive care reducing unwanted variation in practice (quality monitoring and support) Page 78 of 96

79 It is these priority areas that serve as the foundation for the seven steps in the care pathway. Therefore, the focus of this Patient Pathways Mapping Project was to investigate the success with which the PMFs have been implemented at each step of the patient pathway, across each of these four key priority areas. Accordingly, the results of this project have been presented under these four headings, in order to describe the successes and gaps in the care pathway for Breast cancers in the West Hume Cancer Network. Further background information about these four priority areas is presented below. A5.5.1 Multidisciplinary care Multidisciplinary care can broadly be defined as an integrated team approach to health care in which medical and allied health care professionals consider all relevant treatment options and develop collaboratively an individual treatment plan for each patient. 18 The evidence for improved survival as an impact of multidisciplinary cancer care has not been strong, however, reduced time to diagnosis and treatment, improved adherence to guidelines, improved inclusion in clinical trials, improved patient satisfaction and improved education and collegiality for members of the MDT, have all been documented through audits of MDT records and surveys of MDT members. The three strategic directions that guide the improved multidisciplinary care in Victoria are: 19 creating and supporting effective multidisciplinary teams establishing and strengthening multidisciplinary meetings building effective team linkage across and between ICS 18 Achieving best practice cancer care, A guide for implementing multidisciplinary care 2007 Department of Human Services 19 Multidisciplinary Care Literature review June 2012 Department of Health Page 79 of 96

80 Figure 7: Victoria's model for multidisciplinary care Page 80 of 96

81 Multidisciplinary Team Meetings (MDTMs) are defined as regularly scheduled meeting of core and invited team members for the purpose of prospective treatment and care planning of newly diagnosed cancer patients, as well as those requiring review of treatment plans or palliative care. 20 The objectives of MDTMs are: to provide an opportunity for multidisciplinary team discussion of all newly diagnosed and review cases of cancer within an appropriate timeframe to facilitate effective treatment planning to determine, in light of all available information and with reference to the evidence base, the most appropriate treatment plan for each individual patient to provide educational opportunities for team members and trainees to provide peer support to team members 21 A5.5.2 Care coordination Cancer care coordination aims to ensure that care is delivered in a logical, connected and timely manner so that the medical and personal needs of patients and their families and carers are met. 22 Cancer patients are often seen by variety of health professionals across multiple health services and across different health sectors public/ private, acute/ primary health, metropolitan and rural. It is acknowledged that effective care coordination requires strategies for improvement at every level systems, organisational, team and individual levels. In the context of cancer, care coordination encompasses multiple aspects of cancer care delivery including multidisciplinary team meetings, psychosocial assessment and the provision of required care, referral practices, data collection, development of common protocols, information provision and individual clinical treatment. A5.5.3 Supportive care Supportive care is an umbrella term for all services, both generalist and specialist, that may be required to support people with cancer and their carers. 23 It includes self-help and support, information, psychological support, symptom control, social support, rehabilitation, spiritual support, palliative care and bereavement care. Supportive care is required throughout the diagnostic, treatment and follow-up phases of care and is increasingly seen as a core component of cancer care for those affected by cancer. In the context of cancer, supportive care needs include: physical needs (for example, pain, fatigue), psychological needs (for example, anxiety, distress), social needs (for example, practical supports, carer needs), information needs (for example, regarding diagnosis, prognosis, types of treatment), spiritual needs (for example, addressing hopelessness, despair). 24 A5.5.4 Reducing variations in care Unwanted variations in care can be reduced by the introduction of processes and guidelines that assist in the standardising of cancer care. These have the potential to improve the safety and quality in Victorian cancer services. 25 One approach to reduce unwanted variations in cancer care was the development of defined tumour streams, in order to provide a framework for a consistent, evidence-based approach to 20 Multidisciplinary Team Meeting Toolkit 2006 Department of Human Services 21 Multidisciplinary team meetings in Victoria, Monitoring progress towards achieving best practice cancer care Department of Health 22 Linking cancer care: A guide for implementing coordinated cancer care 2007 Department of Human Services 23 Patient management frameworks 2006 Department of Human Services 24 Patient management frameworks 2006 Department of Human Services 25 Clinical excellence in cancer care, a model for safety and quality in Victorian cancer services 2007 Department of Human Services Page 81 of 96

82 care and hence reduce unacceptable variations. Tumour streams include consistent approaches to care for a particular tumour stream supported by: agreed treatment protocols, monitoring of best practice, identifying areas for service improvement, implementing system change to support service improvement and evaluating the impact of service improvement. The Department of Health framework document Clinical Excellence in Cancer Care provides a model for safety and quality in Victorian cancer services. It is not an accreditation system, but instead is designed to support and strengthen the fundamental aspects of cancer care. This model recognises that cancer services operate within an existing health care system and therefore does not seek to duplicate systems, but instead to align cancer service priorities with those of the health services. The key elements of the model (presented in Figure) are: Collaboration and partnerships between quality units and cancer services Clinician and consumer led service improvement Valid and reliable data used to identify gaps in safety and quality and to monitor improvements following change Based on best practice and evidence based care Use of clinical quality tools such as indicators, case and peer review, and audit in a systematic cycle of analysis, discussion, action, follow up and feedback to participating health services As described by the Department of Health, the model identifies six clinical dimensions of cancer care quality to guide patient care monitoring and improvement; and four structural components necessary to provide a solid organisational foundation for quality. Figure 8: Model for safety and quality in Victorian cancer services Page 82 of 96

83 Appendix 6: Profile of the Hume region A6.1 Geographic coverage A6.1.1 Overview of the Hume cancer networks Following extensive consultation and in line with the policy, "Clinical Networks: A Framework for Victoria", Hume RICS formed two clinical networks in December 2008 the West Hume and Border / East Hume Cancer Networks, as depicted in Figure below. This is considered to better mirror clinical practice across the Goulburn Valley and Hume Highway corridors and enable more rapid cancer service development. Figure 9: Map of the Hume RICS West Hume and Border/East Hume Cancer Networks Whilst the ICS are a Victorian Department of Health Initiative, Hume RICS also works closely with cancer services in southern New South Wales (NSW). In May 2009, the Border Cancer Collaboration (BCC) transitioned into the Border / East Hume Cancer Network of Hume RICS and continues to address issues for the community to support cross border cancer services. A6.1.2 Sub regions within the Hume cancer networks In order to analyse data which reflect patient catchments, the Hume region has been divided into four sub regions: Goulburn Valley, Lower Hume, Central Hume and Upper Hume to align with the Primary Care Partnership (PCP) divisions, as presented in Figure. Page 83 of 96

84 Figure 10: Primary Care Partnership divisions in the Hume region 26 The West Hume Cancer Network was responsible for the Goulburn Valley and Lower Hume sub regions, encompassing the health services of Goulburn Valley Health and Kilmore & District Hospital. The Border/East Hume Cancer Network investigated the sub regions of Central Hume and Upper Hume, encompassing the health services of Albury Wodonga Health, Albury Wodonga Private Hospital, Murray Valley Private Hospital, Wangaratta Private Hospital and Northeast Health Wangaratta. A6.2 Population The population of the Hume region (Victoria) by Local Government Area is presented below in Table 8. Also included in Table 8 are population data for NSW LGAs that are part of the broader population catchment for cancer services provided in the Hume region. Presented in this table are the population figures for Albury, as well as the combined population figures for Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana. As shown in Table 8, in 2011 there were nearly 380,000 residents of these Victoria and NSW Local Government Areas, which is projected to increase by 9.7% to 413,000 in 2021 and by 14.4% to 431,000 in Service and Workforce Planning, Portfolio Services and Strategic Projects Division Feb 2009 Department of Human Services Page 84 of 96

85 27 28 Table 8: Hume region, Albury and southern NSW population forecasts LGA Name Greater Shepparton 59,202 63,127 66,282 69,047 71,509 Moira 27,946 29,478 30,688 31,816 32,920 Strathbogie 9,615 9,843 10,067 10,297 10,547 Mitchell 32,040 37,055 42,510 48,624 55,290 Murrindindi 14,179 14,316 14,666 15,244 15,944 Wodonga 34,504 37,367 39,736 42,128 44,337 Indigo 15,367 16,207 16,758 17,253 17,873 Towong 6,247 6,268 6,190 6,098 6,020 Benalla 13,968 14,418 14,748 15,118 15,536 Alpine 12,574 13,049 13,406 13,773 14,152 Wangaratta 27,318 28,199 28,910 29,655 30,457 Mansfield 7,445 8,251 9,072 9,958 10,914 Albury (NSW) 48,545 50,617 52,430 54,120 55,583 Southern NSW* 49,033 48,857 50,273 50,496 50,521 TOTAL 357, , , , ,603 * Combined figures for the LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana 27 Victoria in Future 2012: Population and household projections for Victoria and its regions , Department of Planning and Community Development 28 NSW Statistical Local Area Population Projections , NSW Department of Planning Page 85 of 96

86 The LGAs with the most dramatic projected growth in the decade between 2011 and 2021 as shown in Table 9 are Mitchell (31%), Mansfield (21%), Wodonga (13%), and Greater Shepparton (9%). This highlights the need for appropriate service planning to accommodate the population growth in these geographic areas. Table 9: Hume, Albury and southern NSW population change LGA Name % Change Greater Shepparton 63,127 69, % Moira 29,478 31, % Strathbogie 9,843 10, % Mitchell 37,055 48, % Murrindindi 14,316 15, % Wodonga 37,367 42, % Indigo 16,207 17, % Towong 6,268 6, % Benalla 14,418 15, % Alpine 13,049 13, % Wangaratta 28,199 29, % Mansfield 8,251 9, % Albury 50,617 54, % Southern NSW* 49,857 50, % * Combined figures for the LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana Page 86 of 96

87 A6.3 Cancer Profile Figure presents the total cancer incidence for the 5 year period by Local Government Area for the Hume region (Victoria), the NSW LGA of Albury, and the combined LGAs of Corowa, Greater Hume, Berrigan, Deniliquin, Murray, Conargo, Jerilderie and Urana (referred to collectively as Southern NSW). Figure 11: Total cancer incidence by LGA, Hume region, Albury and southern NSW for the 5-year period Greater Shepparton Moira Strathbogie Mitchell Murrindindi Wodonga Indigo Towong Benalla Alpine Wangaratta Mansfield Albury Southern NSW , Data obtained from Victorian Department of Health and NSW Cancer Registry Page 87 of 96