People affected by cancer moving from intervention into follow-up have a planned approach to their continued medical and supportive care needs which is clearly documented, reviewed regularly and understood by the person and their whānau.
The follow-up care plan is communicated to Primary Care and other community-based care providers.
All patients are assessed for their rehabilitative needs and referred appropriately to Allied
Health, irrespective of the patient’s age.
Equity: The Equity of Health Care for Māori Framework identifies actions to improve equity at the health system, health organisations and health practitioner levels
Living with and beyond cancer identifies the ever-increasing need to ensure people are being assisted with next steps and direction once active treatment is completed. Evidence shows that many people affected by cancer have unmet needs at the end of active treatment or struggle with the consequences of treatment that need to be managed. More people are living longer with cancer and it is now considered a chronic disease. The impacts of increasing treatment options and the disease process itself will result in new challenges for people affected by cancer and the system. Inter-professional, in particular, Allied Health involvement is important as treatment ends to maximise the person’s return to functioning or managing with new limitations.
All people affected by cancer have a need for their physical, psychological and social care needs to be recognised and responded to regardless of age. Within this area there are differences in how children with cancer are supported, e.g. an acknowledged set of services and input (Late Effects Assessment Programme). Similar services are required for adolescents and young adults who receive treatment through the adult cancer service and do not have access to the LEAP programme. This is an area that needs addressing.
This is an emerging space in NZ and as such these standards do not seek to cover all aspects which need to be considered, acknowledging this is work that needs more considered attention. People’s needs in survivorship are as unique as they are in treatment, so solutions need to be as flexible as possible.
Good Practice Points
· When discussing treatment options which may have long-term quality of life impacts, these potential impacts are explained to assist with decision-making.
· Planning for service delivery includes post-treatment provision and clinical reasoning for follow-up processes.
· Transfer of care service plans are evident and audited for consistency.
· Services and health professionals utilise patient contacts to promote secondary prevention strategies, i.e. healthy choices.
· Organisations consider the work undertaken already within the LEAP programme for children as a valuable resource to inform service development for adults, in particular, the adolescent and young adult population.
· A response to survivorship issues is based within the community and primary setting where possible to support the person’s return to community services.
· Health services which focus on rehabilitation should be utilised at the earliest opportunity to maximise the physical improvements a person can make post-treatment. Rehabilitation still has a role even when the prognosis is non-curative as this period of time can extend for a number of years.
Good Practice Points System
· Chronic care modelling should be utilised to inform developments in survivorship practice and service design.
· Transfer of care to primary care is evident in all pathway and service development.
“I’m now living with a
different person. I’m not the
person I was. My body is
not the body it was …”
Cancer Stories Aotearoa –
Kahui Korero Taumahatanga o Te Mate Pukupuku
· Demonstrates an active intent to ensure the person and whānau transitioning out of secondary and tertiary treatment services does not feel dismissed or abandoned.
· Continues to assess the support needs of the person affected by cancer, regardless of the place on the pathway.
· Understands the concepts of rehabilitation and is able to articulate the need for, and the referral pathway to, rehabilitation services.
· Considers the needs of carers and parents and how to link to appropriate supports to re-enter the workforce.
· Uses contacts to promote secondary prevention strategies.
· Is aware of how to incorporate the primary care provider in ongoing work or at transfer of care.
· Has an understanding of the consequences of treatment and key considerations in working with a person living with or beyond cancer.
· Considers the impact of treatment long term on a person affected by cancer in relation to their age and development and the different considerations which need to be addressed.
· Is aware of how to access resources that are age and developmentally appropriate to support a young person or child.
Training and Resources Available
· An online education course http://cancerlearning.org.au/topics/survivorship
· Outline of considerations for children with link to LEAP information http://www.kidshealth.org.nz/long-term-follow-childhood-cancer
· A UK based resource that provides an outline of a variety of impacts in an easily understood format. Cured but at What Cost Long term Consequences of Cancer and its treatment (July 2013) MacMillan Cancer Support.
Last updated October 2016
Last updated October 2016