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CCN Regional Care Coordination Workshop Report 11th October 2012, Palmerston North This report provides an overview of the presentations and discussions for the workshop. Presentations and pre-reading documents can be found on the CCN website using this link. Background Within the Faster Cancer Treatment (FCT) programme of work the Ministry are investing in new cancer nurse coordination services within DHBs. The objective of this service is to appoint nurses in cancer nurse coordinator roles that will: improve the experience for patients, including their family and whānau, with cancer or suspected cancer improve overall access and timeliness of access to diagnostic and treatment services for patients with cancer. The following table provides information on the funding received by the Central Region for cancer nurse coordinator roles and the minimum number of FTE cancer nurse coordinators the DHBs can employ. Note that the funding will be disbursed to DHBs on the 1st October 2012 via a crown funding agreement variation. Central Region DHBs Capital and Coast Hawke’s Bay Hutt Valley MidCentral Taranaki Wairarapa Whanganui 2012/13 funding adjusted ($100,000 for smaller DHBs and remaining funding via PBFF) $164,679 $110,108 $89,578 $116,185 $76,850 $75,000 $75,000 2013/14 and out-years funding adjusted ($100,000 for smaller DHBs and remaining funding via PBFF) $219,572 $146,810 $119,437 $154,913 $102,468 $100,000 $100,000 Minimum number of FTE cancer nurse coordinators DHBs can employ 2.2 1.5 1.2 1.5 1.0 1.0 1.0 Regional Care Coordination Workshop CCN facilitated a Regional Care Coordination Workshop in Palmerston North on the 11th October attracting over 65 clinicians (nurses, social workers, psychologist, oncologists), managers, NGO representatives and consumer representatives from across the region. (see appendix A for list of attendees) The objectives of the workshop were to: understand the Ministry’s requirements around the investment learn from others experience with implementing similar roles identify district cancer care coordination existing resources and needs identify implementation considerations including regional / sub-regional opportunities The intended outcome was to develop an implementation approach for the region to be provided to the FCT Steering Group then GMs/COOs for agreement. The following information was provided to attendees prior to the workshop: MOH information relating to the service specifications for the nurse coordinator roles Summary of findings from the stocktake of existing care coordination roles which was undertaken by CCN in June and used by the MOH to inform this investment Paper describing proposed principles and implementation considerations Paper comparing established models of care coordination in Australia and the UK See appendix B for Workshop Programme Overview of Presentations Cancer Nurse Coordinators - Saskia Booiman, Senior Analyst, MOH Saskia provided the context of the investment in relation to the FCT programme of work, distribution of care coordinator investment, DHB service specifications, evaluation and proposed national support including a national professional role, development of training and assessment tools. Key messages included these roles being part of a wider strategy to improve overall access and timely access to cancer services – they are not the whole solution, care coordination is a key enabler, roles are not to plug gaps without reason for gaps being identified and addressed. Discussion Need for training and education including 1:1 mentoring support for these roles Noted the proposed National Clinical Nurse Coordinator Lead role is subject to funding The Supportive Care Guidance Implementation Plan recommends activity in the area of patients transitioning from active treatment to survivorship – it was queried why the focus of the care coordination roles at the front end of the pathway? Note that the standards are across the whole pathway with a particular focus on the front end and then transition the role to the total pathway Noted that the roles will be evaluated after 3 years – will they continue to be funded after that? Noted that the intention is that funding for these roles will be sustainable Query how the FTE allocation was determined – noted it was a mixture of a minimum of 1FTE per DHB then population based across remaining FTE. Noted that if a cancer registrations based approach was taken this would have resulted in a similar spread With the MOH resourcing this role is there any expectations how this may influence existing roles noting it could disempower other health professionals around care coordination. Need clear delineation of roles and functions along the pathway Are the roles a strategic position? How can 1 FTE case manage 100’s of patients? Noted that coordinators would do triaging and assessment using case management practices to identify patients who most need coordination support but may not need to actively manage all patients. Important to monitor case loads Types of roles will vary by DHB. If investment is in tumour stream roles then CNS roles probably. Smaller DHBs may focus on more generic roles Equity perspective raised eg rurality, Maori – importance of building this into planning Limited resource for complex and high needs therefore need support for professional development and high quality nursing, noted that $100k not enough given travel, professional development and mentorship. Need to explore further Does the MOH see the Cancer Pathway position continuing eg in HVDHB? Need to work with providers regarding systems and processes. Mandate for system change not easy to do. Retain existing roles and need clear delineation Economic Evaluation of Cancer Care Coordinators – Dr Lucie Collinson, University of Otago Paul Smith, CCN Regional Nurse Director and Maria Stapleton, Colorectal CNS, MDHB, presented a literature search on cancer care coordinators on behalf of Dr Lucie Collinson, researcher involved in the BODE3: Burden of Disease Epidemiology, Equity and Cost-Effectiveness Programme, University of Otago. Discussion: Noted that care coordination underpins the FCT approach - wrap services around the patient Barriers are systematic and invisible - need fresh eyes on this to help hit FCT targets Noted that all health professionals to a greater or lesser degree are involved in care coordination. In smaller DHBs there is often a strong relationship between the nurses and social workers who spend a lot of time coordinating the patient journey Support for the roles to be focussed on the beginning of the pathway as that is where there are currently gaps and issues Managing patient’s psychosocial needs - Suggested as a coordinator you would identify psychosocial needs and plug into the person who has the skills and knowledge to address them eg Social Worker, Psychologist. Noted that there are tools being developed to support these eg screening tools. Also noted that time to build a rapport with patients is very important in this area Family and whanau – how is inequalities being addressed particularly in GP services where the issue is not presenting late but nothing being done until late. Noted that it was very difficult for GPs as they may only see 1-2 patients that end up with a cancer diagnosis every year. FCT will move into primary care space over time What isn’t needed is another layer on top. Role needs to fit in each DHB with whatever is there. Needs to be patient focussed. Some patients will move in and out of case load very quickly therefore case load will change rapidly Cancer Care Coordination: An Australian Perspective - Associate Professor Mei Krishnasamy, Director, Cancer Experiences and Nursing Research, Peter MacCallum Cancer Centre Mei provided relevant research and personal experience relating to implementation of cancer care coordination roles in Australia. Key messages included: Changing environment – types of treatments eg more oral chemotherapy, types of patients eg older, increased co-morbidities, type of workforce eg nurses and social workers wanting a different working environment Target resource – don’t spread resource too thin eg focus on part of the pathway initially, identify patients at most need of coordination eg complexity, addressing equity, different resource mix may be appropriate for different DHBs eg identify local need Support – roles require administrative support to function well, whole team needs to embrace the roles, succession planning, mentoring and networking key Making a difference – in 4 years you need to be able to prove the roles have made a difference, need to future proof, need to empower the patient Enablers – aim for an IT solution to link up information across the pathway and country, evaluation to support development Discussion Care coordination title – current title does not express what the role really is and the level of skill and clinical knowledge required to do it. Internationally it is the language that people are familiar with DHB Presentations Each DHB then provided information on the current situation in their district, including providing: o an overview of current care coordination resources – both people and processes o identifying current gaps and issues at a district level and regional/sub-regional level o where they see the care coordination investment is best placed – again considering both district and regional requirements See Proposed Configuration of Roles table on next page and Discussion section following that. Workshop time In the time set aside for workshopping Carol Wrathall, CCN Equity Manager, lead a discussion regarding ensuring equity is built into the planning process and that the relevant tools are applied to the work eg HEAT, WOHIA. CCN also sought feedback from attendees regarding the regional support required over the next few months of early implementation - see page 6. Proposed Configuration of Roles The table below provides an overview of the current roles (predominantly nursing) relating to cancer care coordination and proposed new roles as understood currently. To note, following the workshop, DHBs will be revisiting their proposed approach taking into account the discussions from the day, therefore this configuration may change. Type of coordinator Service / generic cancer *roles which focus predominantly on cancer patients Tumour Stream *roles which focus predominantly on cancer patients Primary Care / Community Navigators MDHB CCDHB *Medical Onc *Radiation Onc *Onc ward, OP Surgical OP Ambulatory Care Women’s Health *Breast *Haematology *Colorectal Respiratory Urology Upper GI PHO Cancer Nurses Palliative Care Coords Iwi Cancer Coords Considerations re new Roles Tumour stream approach – current gaps in respiratory, gynae, Upper GI, H&N WhaDHB TDHB HBDHB HVDHB *Medical Onc *Radiation Onc *Onc ward, OP Oncology Medical oncology OP Medical oncology Oncology OP General Surgery *Breast *Gynae *Haematology H&N *BMT *Colorectal Urology Upper GI Respiratory Community Cancer Nurses Urology *Breast *Breast *Colorectal Haematology Gynae *Breast Respiratory Gynae Plastics / H&N *Colorectal Developmental role Regional - Breast Reconstruction, H&N, Melanoma Tumour stream approach – current gaps in lung, gynae, sarcoma, AYA, Upper GI, H&N WaiDHB Oncology General Oncology Whanau Ora Cancer Navigators (RN and Kaiawhina) Developmental role General Oncology Sub-reg Respiratory 6 Discussion There was recognition of the emerging DHB landscape with the considerations around these roles, particularly the 3 DHB project (Wairarapa / Hutt Valley / Capital & Coast) and the Central Alliance (Whanganui / MidCentral). It was noted that service and tumour stream roles in MDHB and CCDHB, as the two major cancer centres, all work with patients referred in from other DHBs, ie they have an inherent sub-regional / regional coverage Developmental roles have been indicated where DHBs are seeking to focus on the service improvement component of the role initially to ensure the processes and enablers are in place to better support coordination DHB considerations reflected a commitment to the FCT pathway and the acknowledgement that care coordination involves both people and processes / systems It was noted that consideration needs to be given not only to where the current gaps are eg tumour streams, but also where the need is greatest eg complexity of pathway Taking an equity approach in the planning and implementation of these roles came through strongly in the presentations There was debate about the title not adequately reflecting the level of clinical skill involved in the role, however it was agreed that consistency with international practices was appropriate at this stage The importance of training, mentoring and supervision for these roles was highlighted and that the base funding was unlikely to cover this. DHB Cancer Managers noted their commitment to ensuring these roles are adequately supported Noted importance of using an experience based design approach to ensure consumers inform this planning eg ask consumers what support looks like to them Implementation considerations Regional stakeholders at the workshop have requested CCN to continue to provide regional support for the implementation of these roles and the following activities have been identified to be completed over the next 2-3 months: Position description – development of a generic position description, working from the one provided with the service specification and building in learnings from the workshop Recruitment – explore ways to support recruitment particularly with smaller DHBs Orientation – develop generic parts of an orientation package, including the regional / national context Networking – establishing a directory of cancer nurse coordinators in the region, facilitating regular meetings between the group and establishing a shared website to facilitate information sharing (consider a SharePoint site or CCN member-only section). Note that this work will also include existing nurses who perform a core coordination role Communications – developing a communication strategy to support the implementation of these roles Workforce development – explore ways to support workforce development and identify existing training opportunities around the region that can support these roles particularly from a service improvement skill base Evaluation - development of an evaluation framework to support the implementation of these roles and gather data from the outset whilst the Ministry high-level evaluation process is established CCN will work via the DHB Cancer Managers group and DONs to progress this activity. Thank you to all attendees for contributing to a valuable forum Capital & Coast | Hawkes Bay | Hutt Valley | MidCentral | Taranaki Wairarapa | Whanganui 7 Appendix A List of attendees Anne O'Donnell Astrid Koornneef Cathie Teague Caroline Strafford Jane MacGeorge Joe McDonald Julie Holt Leonie Johnson Neil Wilson Paul Smith Su Van Ooyen Sue Lodge Vicky Noble Carol Wrathall Eleanor Whitehead Jo Anson Stephanie Fletcher Dianne Keip Ian Elson Lorraine Sayers Mandy Robinson Pauline Farquhar Denise Brown Jac Mathieson Lindsay Wilde Lisa Simmons Monica O'Reilly Susan Reay Jan Smith Kate Yeo Ann Fowler Anne Cleland Anne Krishna Barry Keane Chrissy Paul Claire Hardie Jane Overton Jenni McWhannell Lee Hefford Linda Dubbeldam Nicky Twigge Maria Stapleton CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCDHB CCN CCN CCN CCN HBDHB HBDHB HBDHB HBDHB HBDHB HVDHB HVDHB HVDHB HVDHB HVDHB HVDHB MCN MCN MDHB MDHB MDHB MDHB MDHB MDHB MDHB MDHB MDHB MDHB MDHB MDHB Petro Nel Victoria Perry Becky Jenkins MDHB MDHB MDHB Capital & Coast | Hawkes Bay | Hutt Valley | MidCentral | Taranaki Wairarapa | Whanganui 8 Gillian Campbell Lizzy churches Pat Bodger Fred Wheeler Janice Byford-Jones Jacinta Buchanan Carmel Hurdle Jevada Haitana Louise Torr Lucy Dunlop Maria Mitchell Rowena Kui Julie Cairns Mei Krishnasamy Sarah Penno Susan Sutcliffe Lizzy Kent Don Baken Sheldon Ngatai Jacqui Thomas TDHB TDHB TDHB WaiDHB WaiDHB WaiDHB WhaDHB WhaDHB WhaDHB WhaDHB WhaDHB WhaDHB ADHB Peter MacMillan NGO NGO Psychology Psychology Consumer Consumer Capital & Coast | Hawkes Bay | Hutt Valley | MidCentral | Taranaki Wairarapa | Whanganui 9 Appendix B Workshop Programme Regional Cancer Nurse Coordinator Workshop Where: Education Centre, Palmerston Nth Hospital When: 9:30 – 3:30, 11th October 2012 Objectives Understand the Ministry’s requirements around the investment Learn from others experience with implementing similar roles Identify district cancer care coordination existing resources and needs Identify implementation considerations including regional / sub-regional opportunities Outcome Recommended implementation approach for the region to be provided to the FCT Steering Group then GMs/COOs for agreement Programme Time 9:30 Topics / speakers Welcome and Introductions (Tea and Coffee available on arrival) Jo Anson, CCN 9:45 Overview of the cancer nurse coordinator investment Saskia Booiman, MOH 10:15 Cancer Care Coordinators – presentation from Dr Lucie Collinson, BODE3: Burden of Disease Epidemiology, Equity and Cost-Effectiveness Programme, University of Otago Presented by Barry Keane and Paul Smith, CCN Regional Nurse Directors 10:30 Implementing Care Coordination roles – the Australian experience Associate Professor Mei Krishnasamy Ph.D. Director of Cancer Nursing Practice & Research Peter MacCallum Cancer Centre 11:30 Presentations from each DHB identifying gaps/issues relating to care coordination DHB Reps (10mins each) 12:00 12:45 Lunch Presentations continued DHB Reps (10mins each) 1:30 Workshop Facilitated by the CCN 3:15 Wrap up Capital & Coast | Hawkes Bay | Hutt Valley | MidCentral | Taranaki Wairarapa | Whanganui