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Working together for better cancer outcomes in the Northern region Northern Cancer Network Newsletter: June 2012 Kia ora koutou and welcome to the June 2012 issue of the Northern Cancer Network newsletter. This publication aims to provide Network stakeholders with the latest information on the wide range of cancer activity happening in the Northern Region, as well as national cancer control activity. In this issue: Projects | National Tumour Stream Update | Regional Tumour Stream Update | Other Network Activity Projects Dry July is underway! Dry July is a fundraising campaign launched for the first time this year in New Zealand. The idea is that participants abstain from alcohol for the month of July—encourage friends and colleagues to sponsor them to stay ‘dry’, and raise money for adult cancer patients. The campaign has been very successful in Australia over the past five years, raising in total over AUD$6.5 million and directly benefiting 13 cancer centres around Australia. With the funds raised, they have been able to provide practical comforts for cancer patients such as: new treatment beds for the radiation oncology wards, new upgraded waiting areas, modern kitchen facilities, landscaping of gardens, free to air TVs, exercise equipment, WiFi internet connections and laptops, a state-ofthe-art patient database system, patient journals and much more. In 2010, AUD$1 million was used to bring the Billington Centre at the Prince of Wales Hospital in Sydney up to a world recognised Gold Standard Facility with the introduction of the Endoscopic Ultrasound Service. We are raising funds this year for the Northern Region Cancer & Blood Service, based at Auckland City Hospital. Literally hundreds of patients from Mercer to the Far North use this service every day, and all money raised will go toward providing some small comforts for our cancer patients. We plan to install WiFi in the waiting areas, buy new seating, install kid’s play equipment, and build a healing and reflection garden for patients to enjoy. So go on! Take up the Dry July challenge and show your support for our cancer patients! Check out the website: www.dryjuly.co.nz to see who our ambassadors are, sponsor someone who is participating, or register to do Dry July yourself. Your small sacrifice will go a long way toward helping people who are going through a tough time in life. Richard Sullivan (centre) Clinical Director Northern Cancer Network, with Temuera Morrison and Kerre Woodham— NZ Ambassadors for Dry July www.northerncancernetwork.org.nz National Tumour Stream Update Faster Cancer Treatment As mentioned in our last newsletter, the Ministry has introduced new Faster Cancer Treatment (FCT) indicators, designed to help streamline the cancer patient pathway from referral through to diagnostic investigation, increasing multi-disciplinary discussion and timeliness to treatment. From 1 July, District Health Boards are required to regularly collect and report accurate data against these indicators, and much work is currently being done to look at system and process changes to enable them to achieve this. The indicators are: 62 day indicator - proportion of patients referred urgently with a high suspicion of cancer who receive their first cancer treatment (or other management) within 62 days. 14 day indicator - proportion of patients referred urgently with a high suspicion of cancer who have their first specialist assessment within 14 days. 31 day indicator - proportion of patients with a confirmed diagnosis of cancer who receive their first cancer treatment (or other management) within 31 days of decision-to-treat. Currently Ian Butler (ADHB Information Management), is developing a Regional Implementation Plan which analyses and unpicks the region’s ability to provide this data from 1 July, along with detailing IT system and data collection issues and a way forward for the region to provide this information in the longer term. The Plan will be completed by the end of June 2012. National Tumour Stream Development In addition to the Faster Cancer Treatment indicators, the Ministry is working with the Regional Cancer Networks to support the development of National Tumour Stream standards. Tumour standards are needed to guide service provision and promote uniform standards of service provision across New Zealand, as the DHBs work to implement the FCT indicators. Development of the national tumour standards will ensure efficient and sustainable best practice management of specific tumour types within the New Zealand health system, and promote a national coordinated and consistent approach to service provision for each tumour type. Timed, effective pathways based on tumour specific quality standards, ensure that patients receive timely and good quality care throughout their cancer journey. They also ensure that the patients receive the same standard of care regardless of the region they live in. In order to develop these National standards, the Ministry has directed that new National Tumour Stream groups are established for the following eight tumour streams: Upper Gastro-intestinal | Breast | Gynaecological | Haematological | Head and Neck | Melanoma | Bowel | Sarcoma We can confirm that the Northern Region is hosting four of these National Tumour Stream groups: Upper Gastro-intestinal | Head and Neck | Melanoma | Sarcoma Work is underway to convene the first national meetings, and appoint national clinical leads. Each National Tumour Stream will have a Project Manager within the Network who will assist with coordination and development of the groups. For further information on Faster Cancer Treatment or the National Tumour Stream Groups please contact Deirdre Maxwell, Network Manager: [email protected] Regional Tumour Stream Update Lung Tumour Stream Update Synoptic reporting update—the region has agreed on a standardised pathology report for resections. Diagnostic Med Lab and LabPLUS are in the process of putting this template on their computer systems. 4th New Zealand Lung Cancer Conference - this was held during March 2012 at the Villa Maria Estate vineyard in Auckland. It proved to be a successful conference with a range of disciplines represented. The Northern Cancer Network team contributed to the conference by presenting work on the Lung electronic MDM template (Dr Geeta Gala) and the HRC DHBNZ Lung Cancer Research Project (Dr Wendy Stevens). It is hoped to hold another conference in 2014. Upskilling Primary Care Providers - the Northern Region has commenced running GP education evenings, led by Dr Chris Lewis (Respiratory Consultant ADHB) and Anne Fraser (Clinical Nurse Specialist ADHB). The evenings are an opportunity to provide education on early diagnosis of lung cancer, and feedback from primary care on these evenings has so far been very positive. Lung Cancer Patient Information Pathway—Mark Young, Tumour Stream Project Manager for the Network, has developed a patient information document that covers the whole pathway for patients, from early presentation to palliative care, providing helpful links to information (via documents and websites) at each stage of the pathway. The draft document is currently out for regional feedback and consultation. It is intended that the final information pathway will be available in a web based format for ease of access by patients and medical professionals. For further information on this project, please contact Mark Young [email protected] www.northerncancernetwork.org.nz Bowel Tumour Stream Update Regional Colonoscopy/Bowel Cancer Data Development The Northern Region has commenced work on : • Developing a regional bowel cancer/colonoscopy dataset in order to present a regional view • • Standardising data to support consistency in regional/DHB reporting Standardising the data definitions. The aim of this data development is to build Key Performance Indicators for bowel cancer in the Northern Region. These KPI’s will populate a regional summary report which will be circulated quarterly to the various regional bowel cancer stakeholders. Waitemata Bowel Screening Pilot The Waitemata DHB Bowel Screening Pilot commenced in late October 2011 and is now well underway. Approximately 1400 invitation letters to the public to participate in the programme, along with test kits, are mailed out each week. Bowel screening is offered to all Waitemata DHB residents who are eligible for publicly funded health services, and who are between the ages of 50 and 74 years. By the end of May 2012, LabPLUS had processed 10,519 samples and identified 612 positive results. Colonoscopies are performed at the Waitakere Day Surgery Unit, by a team of Bowel Screening Pilot nurses and endoscopists. This endoscopy unit has performed 366 colonoscopies and identified five cancers and five malignant polyps. To find out more log on to the website at www.bowelscreeningwaitemata.co.nz. National Colonoscopy Prioritisation Criteria A subgroup of the National Bowel Working Group has been working on the development of national colonoscopy prioritisation criteria for primary care/non colorectal specialists to access colonoscopy directly without the patient requiring a first specialist appointment. The national criteria for colonoscopy is currently out for nation-wide consultation. Other Network Activity Consumer Representation The Northern Cancer Network has a passionate group of consumers who provide the ‘consumer voice’ into the work the Network undertakes. The Consumer Reference Group meet quarterly and are currently focusing on: • Recruitment of new members —including developing a brochure on the group to distribute, an orientation pack for new members, and an introduction session with an expert facilitator • Providing members and support to the National Cancer Consumer Advisory Group • A workshop to develop a work plan of consumer involvement across the Network’s activities National Cancer Consumer Representative Advisory Group This National group has been set up to provide advice on the support, recruitment, development and training of cancer consumer representatives across the cancer spectrum. Members are made up of representatives from the four Regional Cancer Networks, Non Government Organisations, Cancer Groups and Maori. The Northern Cancer Network’s Consumer Reference Group nominated two of their members to be on this national group earlier in the year, and Rowena Mortimer (Chair of the Regional Consumer Reference Group) and Kelvin Twist (member of the regional Consumer Reference Group and also consumer rep on the Lung Tumour Stream group and ADHB Cancer Control Steering Group) both attended the inaugural meeting held on 29 March 2012. At this first meeting, the group reviewed the terms of reference and a work plan to promote CCR activity. Newly elected chair Dr Chris Walsh says “the group is united in its desire to improve the representation of cancer consumers across the cancer spectrum and make a positive impact on cancer services”. The next meeting is planned for June 28, in Wellington. We will keep you posted on activity from this group via the ‘consumer participation’ section of our NCN website. www.northerncancernetwork.org.nz Would you like to join the Northern Cancer Network Consumer Reference Group? If you: Have had lived experience of cancer, and therefore been a user of the cancer service in NZ; or • Have been a carer or full support person for someone with cancer (and therefore understand the services available and the issues and effects of these on the cancer patient) then we would love to hear from you. Please contact [email protected] for an “Expression of Interest” form. • www.northerncancernetwork.org.nz Inaugural National Cancer Consumer Representative Advisory Group – 29th March 2012 Back row: David Swallow, Chris Walsh, Raewyn Calvert, Jacqui Thomas, Kelvin Twist Middle row: Jenine Down, Rowena Mortimer, Marj Allan Seated: Bubsie McFarlane, Milly Brown Other Network Activity Cancer Services Directory The Directory continues to be an excellent resource of information for cancer patients and their families —providing an easily accessed database of all the cancer specific support services available in the Northern Region. It sits within the Healthpoint website (www.healthpoint.co.nz) under the yellow “Cancer Support” tab. We receive regular reports on website activity, which show that the directory pages are currently averaging 15,000 plus views a month. This is very encouraging and supports the fact that there was a need (as identified) for simple easy to find information of this nature for patients. We encourage you to check it out for yourself, and tell anyone you know who might benefit from it, to have a look also. Focus on Inequalities National Maori Leadership — Hei Ahuru Mowai The four Regional Cancer Networks, in conjunction with the Ministry of Health, are working with whanau, hapu and iwi to improve cancer outcomes for Māori. There has been agreement that a National Māori Cancer Control Leadership Group is to be established with the aim of improving outcomes for Maori who are affected by cancer, and improving the health of Maori whanau affected by cancer. The group will also contribute toward the pool of expertise and leadership required to reduce Māori cancer death rates and achieve equity in cancer mortality between Māori and other New Zealanders. It will provide leadership, alignment and linkages for the Regional Cancer Networks’ Maori Cancer Leadership Groups and to ensure that the national focus on equity is maintained and strengthened. The group had its first hui on June 13, 2012. We are now pleased to announce the formation of Hei Ahuru Mowai Incorporated (The Nation Maori Cancer Leadership Group). Members were selected through a national process, and include Ms Donna MatahaereAtariki, Dr Ramon Pink, Ms Donna Cormack, Mr Gilbert Taurua, Ms Christine Pihema, Me Dene Ainsworth, Ms Bubsie McFarlane, Mr Gary Thompson and Dr David Jansen. They are supported by a project team comprised from the Regional Cancer Network managers and equity managers, and the management of Te Ohu Rata o Aotearoa (Maori Medical Practitioners Association). Completion of the HRC DHBNZ ‘Identification of barriers to the early diagnosis of people with lung cancer and description of best practice solutions’ project This Health Research Council of New Zealand & District Health Boards New Zealand (HRC DHBNZ) funded project was led by Dr Wendy Stevens. The project aimed to identify the major barriers to the early diagnosis of lung cancer and to develop recommendations to reduce these barriers so as to expedite diagnosis and improve the clinical journey for people with lung cancer and their whanau/family. The project was conducted over a three year period from June 2009 until May 2012 and involved two Cancer Networks, three District Health Boards and four primary care organisations within the Auckland and Lakes Regions. A mixed methods design was used to collect both quantitative and qualitative data, from which suggested best practice recommendations were developed and cost assessed. The final report for the project and the list of recommendations will be available soon on the Northern Cancer Network’s website. A hard copy of the report can be requested from the research coordinator Melissa Murray at [email protected] Data Collection begins for the PIPER Project The PIPER Project is a three year Health Research Council (HRC) and Ministry of Health (MOH) funded project lead by Cancer Trials New Zealand (CTNZ), and will be the most comprehensive study of patient outcomes from colorectal cancer undertaken in New Zealand. The Presentation, Investigation, Pathways, Evaluation and treatment (Rx) (PIPER) project will collect data on patients’ characteristics, their cancers, the treatment they receive, and their outcomes to provide an assessment of patient management across New Zealand to International standards. Data on all New Zealand cases over a selected timeframe will be collected regionally across sixcentres from a variety of service providers, including the private sector, into a centrally-held database. Five of the six Data Managers are in place, and the initial phase of data collection is due to start mid-June. For further information on the PIPER Project please visit http://www.fmhs.auckland.ac.nz/sms/oncology/ctnz/trials/piper.aspx Contact Us The Northern Cancer Network is based in the offices of the Northern DHB Support Agency, at 650 Great South Road, Penrose. Postal address: PO Box 112147, Penrose, Auckland 1642. For information on the Network, or if you would like to be added to the database for this newsletter, please contact us by email: [email protected] . Likewise, if you are receiving updates from us and do not wish to, please email us to be removed from the database. This newsletter is also available in the publications section of the NCN website. www.northerncancernetwork.org.nz