National Cancer Survivorship Initiative Ciarán Devane Chief Executive, Macmillan Cancer Support

2 The Initiative is structured as follows: Assessment & care planning Managing active & progressive disease Late effects Children & young people Work and finance Self management Research Cross-cutting themes (Information/workforce/ commissioning) Pilots (NHS & Other)

3 We have six expectations of the National Cancer Survivorship Initiative A document describing our vision of the care of people living with or beyond cancer A supporting implementation plan A set of models of care which we have piloted and we know work Acceptance of ‘survivorship’ as a priority for patients Translation of the vision into action at a local level, using approaches similar to those tested A community of interested people who will continue to lead this agenda National Cancer Survivorship Initiative

Some of our achievement in 2008

Promoting recovery Sustaining recovery Managing consequences of treatment Supporting people with active and advanced disease

Promoting recovery

Patients valued the assessment, they felt (Tribal 2010)

Sustaining recovery

Managing consequences of treatment

Supporting people with active and advanced disease

Diagnosis & Treatment Recovery and adjustment Early monitoring End of life care [Year 1 deaths] Progressive illness* Newly diagnosed – assumed need of acute sector care Surviving the first year – assumed need of rehabilitation Up to 5 and 10 years from diagnosis – designated as ‘early monitoring’ Incurable disease but not in last year of life – assumed need more treatment and support End of life care in last year – subset of deaths in first year of diagnosis Identifying the cancer care pathway Later monitoring Beyond 10 years from diagnosis – designated ‘later monitoring’ * The numbers in the progressive illness group will be underestimated and the numbers in the monitoring groups will be overestimated as estimates for significant late effects have not been made.

Breast cancer care pathway – estimating the number of women in the UK, 2008* Colorectal cancer care pathway – estimating the number of people in the UK, 2008* Lung cancer care pathway – estimating the number of people in the UK, 2008*

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Promoting recovery Sustaining recovery Managing consequences of treatment Supporting people with active and advanced disease

Engagement with clinicians & commissioners Time Investigate Innovate Implement We are here

Key messages A shift in professional culture is essential to enable supported self management. New models of cancer aftercare gives opportunities to improve quality and reduce cost. Many people can self manage their health with support, with rapid access to professionals when needed. There is significant unmet need arising from consequences of treatment, which can be successfully addressed through prevention and treatment. Good survivorship care requires timely communication across boundaries.

33 We have six expectations of the National Cancer Survivorship Initiative A document describing our vision of the care of people living with or beyond cancer A supporting implementation plan A set of models of care which we have piloted and we know work Acceptance of ‘survivorship’ as a priority for patients Translation of the vision into action at a local level, using approaches similar to those tested A community of interested people who will continue to lead this agenda National Cancer Survivorship Initiative