How we discuss survivorship
Today over 1.7 million people living in England have had a diagnosis of cancer, a figure likely to rise to over 3 million by 2030. It is very important that the increasing numbers of people living with and beyond cancer, their carers and their families have access to the support and services they need to live as normal a life as possible, for as long as possible.
The NCSI vision (January 2010) – available to download in full below – sets out that all cancer survivors should have:
- A personalised assessment and care plan
- Support to self-manage their condition
- Information on the long-term effects of living with and beyond cancer, and
- Access to specialist medical care for complications that occur after cancer.
The vision document sets out five key shifts, which the initiative has identified as necessary to achieve improved care and support for cancer survivors. These are:
- A cultural shift in the approach to care and support for people affected by cancer – to a greater focus on recovery, health and well-being after cancer treatment
- A shift towards assessment, information provision and personalised care planning
- A shift towards support for self management
- A shift from single model of clinical follow up to tailored support that enables early recognition of and preparation for the consequences of treatment as well as early recognition of signs and symptoms of further disease
- A shift from an emphasis on measuring clinical activity to a new emphasis on measuring experience and outcomes for cancer survivors through routine use of Patient Reported Outcome Measures in aftercare services.
A full version of the 5 shifts is available to download in the vision document below.
Evidence in the vision document includes a survey by the Picker Institute, also available for download below. The survey found that 43% of respondents would have liked more information and advice, and 75% did not have, or did not know if they had, a care plan.
The vision document also includes examples from the work of the 37 test communities looking at a range of improvements to care for survivors such as telephone based support services staffed by trained cancer nurses and a three month wellness and exercise programme.
Following the publication of the NCSI vision, the focus of the initiative in 2010 will be to engage service users, clinicians and commissioners in defining the new models of aftercare for people affected by cancer and to establish the longer term survivorship research programme.
You can see examples of how we are communicating the survivorship vision on the Presentations page.
Last updated on August 25, 2011