Download Survivorship forum - Central Cancer Network

Survivorship Forum - from discharge, through
follow-up and beyond
Forum Report
The Cancer Society of New Zealand Manawatu Centre Inc., supported by Central Cancer
Network and the Cancer Society Wellington Division, hosted a one-day Survivorship Forum
in Wellington on the 1st December 2010.
The objectives of the forum were to:
o
increase awareness of survivorship issues (the focus of the forum was from point of
discharge onwards)
o
identify effective programmes and initiatives relating to survivorship
Attendees
The forum was attended by 92 participants, including approximately 20 individuals who
identified themselves as consumers. The range of health professionals attending included
doctors, nurses and allied health across primary, secondary and tertiary. There was strong
Non-Government Organisation (NGO) participation.
Programme
The programme for the day consisted of 10 presentations covering a range of Survivorship
topics including a consumer perspective, international models, research and existing
programmes in NZ. Presentations can be viewed on the Central Cancer Network website via
www.centralcancernetwork.org.nz – click on the News section of the home page.. There is
also a link on the Cancer Society website www.cancernz.org.nz.
In addition, the following forum participants were asked to provide brief updates on related
topics that had been raised during the presentations and discussions:
 Steve Creed, MOH – national health IT plan
 Sarah Penno, Cancer Society NZ – project to develop a nationally available patient
diary
 Jo Anson, CCN – project to develop the national implementation plan for the
Supportive Care Guidance (see Appendix C for info sheet that was provided on the
day)
 Stephanie Fletcher, CCN – development of web-based cancer service directories by
the regional cancer networks
Discussion
Due to the strong message coming through from presenters and participants that Survivorship
Care Planning needs to be progressed in NZ, the workshop session in the afternoon was
modified with the following two questions being posed at the conclusion of the presentations.
These questions were briefly discussed by participants and additional feedback was also
sought from participants via the evaluation form which was emailed out after the event.
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How do we take survivorship care planning forward? (Who, what and when?)
 A coordinated national approach to the development / adaptation of tools required
 Development needs to include all stakeholders, particularly consumers
 Link with national Supportive Care Implementation Plan process
 Care plan design / content needs to be considered carefully to meet the needs of
diverse populations and care needs
 Care plans need to be individualised, including tailored surveillance packages where
appropriate
 Importance of maintaining relationships with patients post treatment and transferring
those relationships back to primary care
 Needs to empower the consumer
 Needs to encompass healthy lifestyle information
 Coordinated approach between health professionals critical
How can existing programmes relating to survivorship be further developed, promoted, coordinated and accessed?
 Regional service directories should assist with promoting programmes
 Survivorship information packs to be provided to patients at time of discharge
 Agencies involved continue to communicate, collaborate and share information
 Robust end-of-treatment planning with information pertaining to services already
available
 A range of media approaches is needed
 Informing health professionals of programmes available so they in turn discuss these
with patients
Evaluation Results
A brief evaluation form was emailed to participants after the forum and 21 were returned.
Participants were asked if they believed the objectives of the forum were met or not. The
majority responded that the objectives were met with many commenting that it was a good
starting point.
Participants were also asked to provide further comment on the two discussion questions
noted previously. These results have been included in the section above.
The main comment for improving the event was to allow more time for presentations and
discussion – a number thought a 2 day workshop would have been better.
Next Steps
There was general agreement at the forum that a planned approach should be taken to
implement Cancer Survivorship Care Plans across NZ.
The presentations and report from the forum will be provided to Health Outcomes
International (HOI) who are partnering with the regional cancer networks to develop the
national implementation plan for the Supportive Care Guidance. HOI will be undertaking
research to inform the plan over the next few months and will be bringing the sector together
for workshops in the second quarter of 2011. This is an appropriate vehicle to support this
agenda.
In the interim the Manawatu Cancer Society will be meeting early in the New Year to
consider how it can continue to support this focus on Survivorship. Forum participants email
details have been added to a database of interested parties and will be advised of progress as it
occurs.
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Appendix A
Survivorship Forum - from discharge, through
follow-up and beyond
1 December 2010, 8.45am – 4pm
Block 4 (4B06) Level 2,
Massey Campus, Wellington
8:45 – 9:15
9:15
9:25
9:55
10:15 – 10:40
10:40
11:00
11:20
11:40
12:00
12:20 – 1:00
1:00
1:20
1:40
2:00 – 3:00
3:00 – 3:45
3:45 – 4:00
Registration – tea and coffee available on arrival
Karakia and welcome:
Bill Bly
Opening Address: The history and possible future
direction of survivorship care.
Phil Kerslake
Survivorship-what do we mean and what might we
achieve?
Dr Simon Allan
Morning Tea
The impact of cancer on survivors: data from a large
national sample of older adults.
Don Baken
Survivorship – What does it mean?
Trish Clark
Survivorship Care Plans
Cheryl MacDonald
The national Late Effects Assessment Programme
(LEAP) service - long term follow up care for
survivors of childhood cancer.
Rosie Simpson and Belynda Wynn
What is health care going to look like in 2020
Dr David Ayling
Lunch
The Living Well Cancer Educational Programme
Hazel Neser
Just finished treatment- now what?
Jane Currie
Going Beyond Pink: the importance of exercise for
survivorship
Dr Lynnette Jones
Workshop and afternoon tea
Break into groups to workshop a set of questions
aimed at taking the themes from the day and
shaping them into potential actions.
Reporting back and panel discussion
Panel members: presenters
Session Chair:
Bill Bly
Chair
Manawatu
Cancer Society
Session Chair:
Jo Anson
Manager
Central Cancer
Network
Session Chair:
Steve Maharey,
Executive
Member
Manawatu
Cancer Society
Session Chair:
Dr Simon Allan,
Clinical Director
Central Cancer
Network
Closing remarks and Karakia:
Phil Kerslake
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Appendix B
Presenter Bios and Presentation Briefs
Opening Address: The history and possible future direction of survivorship
care.
Phil Kerslake
Presenter bio
Phil Kerslake is a well-known Wellington-based cancer survivor and support services
proponent. First experiencing symptoms at 14 or 15, he was diagnosed as a 19 year
old with an incurable lymphoma. He has since coped with seven diagnoses over 32
years and at age 51 lives with active disease. Phil is married with two toddler sons.
Over the past five years Phil has presented to over 10,000 patients and cancer
support and medical professionals throughout NZ on coping with cancer for best
outcomes. He works with cancer support NGOs to help enhance support services
and encourages patients to become active participants on their treatment and
recovery pathways.
Presentation brief
Phil’s patient support book Life, Happiness … & Cancer has sold 13,000 copies
since 2006 making it arguably the most read cancer patient support resource in the
country. Life, Happiness … & Cancer is provided at both Auckland City Hospital
and Wellington Hospital as a free resource for all new patients.
This presentation will recount the history of survivorship care internationally,
identifying some of the different models of care applied to date. From his own
perspective as a cancer survivor, the presenter will then discuss the patient’s support
needs from post-treatment care, noting that there may not be a one-size-fits-all
solution.
------------------------------------------------------------------------------------------------------Survivorship - what do we mean and what might we achieve?
Dr Simon Allan
Presenter bio
Dr Allan is a Medical Oncologist as well as a Palliative Care Physician. He is a coclinical director for the Central Cancer Network has a part time role as Senior Clinical
Advisor to the MOH (Palliative Care) and is clinical advisor to Hospice NZ.
Dr Allan is very keen to see that the cancer experience for patients, families and their
whanau is as good as it could be given best evidence and within our country’s
resources.
Presentation brief
With the generous support of the Derek Ward Scholarship and the Cancer Society a
group met to hatch a devious plan that would set the scene for today’s meeting and
the rest is now up to you! What a great topic to celebrate but today we acknowledge
that a lot of work is required to achieve best outcome and health for cancer survivors!
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The impact of cancer on survivors: data from a large national sample of older
adults.
Don Baken
Presenter bio
Don Baken is a clinical psychologist who works for the Psycho-Oncology Service run
by Massey University in the MidCentral Health DHB. In addition to clinical work he
also coordinates the research associated with the Service.
Presentation brief
This presentation will outline the findings of the analysis of data from a large national
sample of older adults. The sample of around 2500 allows comparisons between
those with a history of cancer, those with other chronic conditions and those with no
history of chronic conditions. Comparisons will also be made looking at time since
treatment is finished and ethnic differences.
------------------------------------------------------------------------------------------------------Survivorship – What does it mean?
Trish Clark
Presenter bio
Trish is Charge Nurse Manager of the Oncology Unit Southland Hospital Invercargill
and has worked in the Oncology field for the past 25 years. In this time she has seen
considerable changes in the management of the treatment of cancer however
supportive care of the patient and their whanau remains her focus of care. Due to
these changes, surveillance and survivorship issues now need to be at the fore front
of all cancer nurses’ thinking. Trish gained a PG Dip in Psycho-oncology from the
University of Melbourne and Master of Nursing for Otago Polytechnic.
Presentation brief
This presentation is drawn from my experiential learning and overseas experience of
a Survivorship Workshop at the International Nurses in Cancer Care Conference
Atlanta March 2010 and from a site visit with an Oncology Nurse Practitioner.
------------------------------------------------------------------------------------------------------Survivorship Care Plans
Cheryl MacDonald
Presenter bio
Cheryl is the lead CNS for the breast care service at MCH. She works across the
cancer continuum to ensure a seamless journey for the patient and their family. She
is particularly interested in lifestyle and exercise and its impact on prognosis after
breast cancer treatment has finished.
Presentation brief
How survivorship care plans can promote quality of life, self management and
lifestyle change after a cancer diagnosis.
The national Late Effects Assessment Programme (LEAP) service - long term
follow up care for survivors of childhood cancer.
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Rosie Simpson and Belynda Wynn
Presenter bio
Belynda is a clinical nurse specialist who coordinates the National Late Effects
Assessment Programme (LEAP) service for the South Island and is based in
Christchurch and Rosie is the nurse specialist based in Wellington who coordinates
the LEAP service for the greater Wellington area, Hutt and Wairarapa areas.
Presentation brief
We will discuss the background to the development of the LEAP service in NZ, what
is provided by the service and who is involved.
What is health care going to look like in 2020
Dr David Ayling
Presenter bio
Primary Health Care Doctor, currently working in youth health, prison medicine and
general practice. Also have primary health governance and management roles
through PHO and Compass Health. Chair Central PHO Clinical Board. In addition to
being energised by direct patient contact I love my role as a health system architect
with all its challenges of distributing resources for the best community gain.
Presentation brief
Most presentations look at the here and now, usually painting a picture of problems
and gaps. This presentation challenges us to imagine what the desired future will be,
what’s important to achieve that future and what each of us can expect as a client in
our health system.
----------------------------------------------------------------------------------------------------------------The Living Well Cancer Educational Programme
Hazel Neser
Presenter bio
Hazel works part-time for the Cancer Society Wellington Division as the CanSupport
and Groups Facilitator. She has been involved in patient education and survivor
networking groups for the past 7 years. She also teaches health psychology and
healthcare communication in the national radiation therapy training programme at the
School of Medicine & Health Sciences, University of Otago Wellington, which she
has done for the past 10 years.
Presentation brief
The Living Well Programme is a 6-week educational programme aimed to help
patients and their family/whanau cope with the changes to their lives resulting from
cancer and its treatments. This is done is a small group format within a safe setting
so that participants can talk about their illness experiences, for example, changes in
life goals, potential losses, and maintaining hope and resilience. Two trained
facilitators from a health professional or counseling background facilitate the
programme and guest speakers on specialist topics contribute to relevant sessions.
The programme aims to increase understanding about how to manage the sideeffects of treatments, such as fatigue; reduce the risks of cancer recurrence through
lifestyle changes, for example, diet, exercise, weight management; increase coping
skills such as learning to relax, talking with others and knowing how to ask questions;
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identify support services in their community; assess reliable sources of information;
manage anxiety regarding fears of recurrence; maintain hope.
------------------------------------------------------------------------------------------------------Just finished treatment- now what?
Jane Currie
Presenter bio
Jane Currie is the CEO and Health facilitator at Health Journeys Cancer Care in
Hamilton. She is a long-term cancer survivor, with the experience of two rounds of
breast cancer under her belt. She founded Health Journeys Cancer Care in 2007 as
a charitable trust as she saw a need for emotional interventions at the most crucial
stages along a cancer journey-e.g. at first diagnosis, just after treatment and long
term survivorship.
The organisation uses a holistic model of care, which was first developed in pain
management and Health Journeys Cancer Care, is the only organisation outside the
Auckland Cancer Society that has a post treatment programme. She is passionate
about psycho-oncology and is on the national committee of Psycho-social Oncology
New Zealand as well as various committees established by the Central Cancer
Network. She is currently completing her degree in psychology and plans to
undertake a Masters program in Community and Health Psychology via Waikato
University.
Presentation brief
The Survive to Thrive workshop was developed to facilitate those that have
completed their treatment for cancer to change their focus from” Survive to Thrive”.
The workshop is focussed on building self-efficacy and resilience. The workshop is
built around a holistic model of care- The Health Change Process Model. This model
will be discussed in detail as well as the processes surrounding screening and
evaluation.
------------------------------------------------------------------------------------------------------Going Beyond Pink: the importance of exercise for survivorship
Dr Lynnette Jones
Presenter bio
Dr Lynnette Jones is a Senior Lecturer in Clinical Exercise Science at the School of
Physical Education, University of Otago. She established the Beyond Pink Exercise
Programme following discussions with the Oncology Department at Dunedin Hospital
in September 2009. Dr Jones has undertaken research into the benefits of exercise
for health in spinal cord injured men, women with weight issues, prediabetic women,
and more recently, women with breast cancer.
Presentation brief
This presentation will discuss the benefits of exercise for individuals with cancer and
highlight the exercise challenges faced by consumers and those responsible for
developing and delivering exercise prescriptions. Breast cancer will be the primary
focus.
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Appendix C
Guidance for Improving Supportive Care for
Adults with Cancer in New Zealand (MOH, 2010)
C HAPTER 7: S UPPORT FOR LIVING LO NG - TERM WITH CANCER
Survivorship refers to the period of time extending from the time of diagnosis through
to death. The period is divided into acute, extended and permanent phases.
O BJECTIVES
1.
2.
3.
4.
All people living with cancer long-term have their continued care and support
needs routinely assessed at each critical point throughout their cancer service
pathway.
All people living with cancer long-term receive a planned approach to their
continued care and support that includes needs assessment, goal setting, an
ongoing care plan, regular evaluation and referral to appropriate specialist
support and care services.
Continued care and support services are readily accessible, and provided in a
timely and acceptable manner.
Health professionals and support workers working with people affected by
cancer receive culturally appropriate education and training that enables them to
assess the person’s continued care and support needs and to make appropriate
referrals to specialist services.
A REAS FOR ACTION
General
25. Enable people affected by cancer to have greater control in looking after
themselves.
26. Improve equitable access to continued care and support for people living longterm with cancer.
27. Develop and distribute regional continued care and support directories.
Service delivery
28. Develop and use continued care and support assessment protocols and tools.
29. Ensure a seamless interface between hospital and community-based continued
care and support services.
Workforce development
30. Establish systems to assess ongoing care and support training needs for hospital
and community-based service providers.
Research and evaluation
31. Determine the efficacy and effectiveness of continued care and social
support for people affected by cancer.
Draft notes on ‘Support for living long term with Cancer’ from recent workshops undertaken by
Health Outcomes International (HOI), in partnership with the regional cancer networks, to inform
the implementation plan for the Supportive Care Guidance. (brief selection of responses only)
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What’s
happening?
Gaps
Issues



















Cancer society ongoing programmes available
Lack of co-ordination to primary & NGO
Cancer Society counselling & emotional support
Living Well programme for/by Māori
No screening of psychological needs post treatment
Cancer Society patient networks & support group
Lack of adequate referral process after discharge to cancer society.
Social support
Access to information
Lack of GPs, those that are there are stretched
No structured patient education on discharge
Interface between PHOs/NGOs & Hospice
Appropriateness of available services for range of consumers (distance, cultural
approp)
There is not a cancer survivorship surveillance plan that patient, GPs, consultant
work on
Social stigma, including being treated differently by employers/peers
Financial hardship
Feelings of abandonment post treatment
Training for carers on how to care
Costs of accessing care providers over time (GPs)
Cross Cutting Themes
Whānau ora approach: The Guidance aligns to a whānau ora approach in that it embraces care
provision of both the patient and the whānau. In addition the Guidance further supports a whānau ora
approach by highlighting the requirement for assessment and support need provision across the 8 care
domains – this ensures holistic care is enabled.
Inequality reduction: As previously stated the entire Guidance document, and therefore the
subsequent Implementation Plan is to be viewed from an inequalities reduction lens.
Cultural responsiveness: At the workshops the need for cultural responsiveness at systemic and
individual level was repeatedly raised. This included assessment of patient and whānau needs, the need
for and use of assessment tools, training and resources for staff, and resources for patients and whānau.
Interpersonal Communication: Discussions included issues of communication between
patient/whānau and clinicians, between and across clinicians, and between patient and their
whānau/social networks. Communication skills and their particular importance in this area of
healthcare delivery was also noted to be a recurring theme. Access to training, recognition of the
importance of resources for training and the need to mandate training were raised in several of the
workshops.
Access: Equity of service provision across the country, access to services, including silo funding
challenges and age barriers, screening vs. assessment of patient and whānau needs, referral systems to
support and promote access to services as well as resourcing were all discussed repeatedly by
workshop participants.
Time: There were two components to the discussion that occurred regarding ‘time’. The first was a
recurring theme of the timing of information delivery to patients/whānau and the need to repeatedly
offer and reoffer support services. The second was the ‘time’ available to sector workers to hold
conversations with patients/whānau, including the challenges of time constraints and the subsequent
reduction of the ability for sector workers to just sit and listen.
Workforce: This issues was raised repeatedly and noted the challenges of the workforce to meet the
needs and expectations of patients/whānau and their own personal practice (including their aims to ‘do
a good job’) within a setting of budget constraints and current healthcare priorities which are not
necessarily directly related to the provision of supportive cancer care.
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